How to Get the Most Bang for Your Prescription Medicine Buck

By Bob Aronson

I am a senior citizen, who has had a heart transplant and who also has Chronic Obstructive Pulmonary Disease (COPD).  I take a good number of prescription drugs and despite having Medicare Part D insurance I still pay thousands of dollars a year for my prescriptions.  Most of the drugs I take have been around for quite a while, but not long enough to allow the sale of generics and because there are few if any pricing restrictions, most of my meds are outrageously high priced.

One of the drugs I take is called Foradil.  It was approved by the FDA in February 2001 for the maintenance treatment of asthma and the prevention of bronchospasm in reversible obstructive airways disease..  Despite being on the market that long, it still retails for about $250.00 for a 30 day supply.  Spiriva is another COPD drug and is often taken with Foradil.  It retails for about $350.00.  I take about a dozen drugs and these two alone total over $600.00 a month. Insurance cuts that cost in half, but they are still expensive.  Because of these prices I know of many seniors and others who have to choose between eating and paying for their prescription meds.

It is an unfortunate fact of life that prescription drugs are more expensive in America than any other place in the world and as a result if you contract a serious illness like cancer you may not be able to afford the treatment that can save your life, even if you are insured.

It costs a whole lot of money to be sick in this country and a whole lot of people die — not because there is no medicine or treatment but because they can’t afford to get well.  That strikes me as being just plain wrong.

Healthcare costs are skyrocketing, but prescription drugs lead the parade. Americans now spend a staggering $200 billion a year on them and the end is nowhere in sight.  The cost of staying alive is growing at the rate of about 12 percent a year.  It appears as though people are taking a lot more drugs than they used to and they are taking the really expensive new ones instead of older, cheaper drugs.  The reason?   Either physicians are pushing new medications too hard or, more likely, people are seeing the ads for new drugs in the media and are demanding them.  Strangely, unlike most other businesses where prices come down with time, that’s not true with drugs.  Price increases are commonplace even with the older ones and the increases aren’t one time adjustments. Often the price tag increases several times a year.

Earlier I pointed out that Americans pay more for their drugs than any other country in the world — but it isn’t just a little more…it’s a whole lot.  On average, the cost of prescription drugs in the U.S. is at least double what people in other countries pay for the same exact prescription and it some cases it is 10 times more.

A 2013 report from the International Federation of Health Plans, says Nexium, the pill commonly prescribed for acid reflux, costs U.S. patients more than $200, while Swiss citizens only pay $60 and people who live in the Netherlands pay $23. But Nexium is a drop in the bucket compared to cancer drugs. http://www.drugwatch.com/2014/10/15/americans-pay-higher-prces-prescription-drugs/

Not long ago CBS’ 60 Minutes devoted a segment to the absurdly high cost of cancer drugs. Correspondent Lesley Stahl reported that many cancer drugs cost well over $100,000 for a year’s worth of medicine. She said that in the fight against cancer, most people can expect to be on more than one drug. The bill for medications can escalate to nearly $300,000, a price tag that doesn’t include fees charged by a doctor or a   hospital. Health insurance companies – including government polices like Medicare – don’t cover the full cost of these drugs. Some policies don’t cover some of these drugs at all. But cancer is not alone in the extreme price arena. Drugs for chronic diseases like multiple sclerosis also carry inflated prices. Prescriptions of Copaxone and Gilenya cost about $4,000 and $5,500, respectively and that amount is almost three times more than the most-expensive price in other countries.

In the case of almost every other product sold on the free market, the older a product gets the less it costs. In the case of cancer drugs in America, the inverse is actually true. Novartis developed Gleevec, one of the most popular cancer drugs, in 2001 and sold it for $28,000 a year. By 2012, its cost rose to $92,000. Despite not being a novel treatment, Novartis is allowed to hike up the price every year in the United States.

So If you are a reasonably intelligent person you will ask three questions.  1) Why do these drugs cost so much? 2) What is being done to bring the prices down? And 3) Is there help available to people who can’t afford the drugs that can keep them alive.

Let’s answer the questions one at a time.  First.  Why are drugs so expensive?  Well, if you listen to the big pharma companies they will tell you that the cost reflects their investment in research and development of the drugs.  They will tell you they spend millions on drugs that don’t pan out and that expense is passed on to the patient.  But are they telling the truth?  No they aren’t! Pharmaceutical companies are fond of saying Americans take the lion’s share of the R&D costs for the rest of the world – calling other countries “foreign free riders.” So, drug companies are forced to charge Americans more to recover what they don’t get from other countries.

In fact, the more disturbing truth is that companies charge what they want in the U.S., and it’s a profiteering paradise for them.  U.S. law protects these companies from free-market competition.  For example, Medicare is not allowed to negotiate prices. By law, it has to pay exactly what the drug companies charge for any drug.  In effect our lawmakers told the pharmaceutical companies that they can charge whatever they want and we (the taxpayers) will pay it. Even may insurance companies don’t negotiate or do it half-heartedly.  Companies make billions on most of these drugs, and they receive massive tax breaks for R&D, leading to inflated figures. Another huge portion of the costs are subsidized by taxpayers.

Here’s the sad part of all this R and D and the introduction of new drugs.  Only 1 in 10 of them actually provides substantial benefit over old drugs.  To add insult to injury the side effects of the new entries create the need for more drugs. And — some of these drugs have horrible complications that result in lawsuits to recover damages.

University of Medicine and Dentistry of New Jersey Health professor and policy expert Donald W. Light says, “We can find no evidence to support the widely believed claims from industry that lower prices in other industrialized countries do not allow companies to recover their R&D costs so they have to charge Americans more to make up the difference and pay for these ‘foreign free riders,’”

In contrast, governments in other countries put caps on the price of drugs and negotiate prices based on what the actual therapeutic benefit is. And Big Pharma still turns a healthy profit in other countries, despite costs being 40 percent lower than they are in the United States.

Big Pharma would have many Americans believe that it is disadvantaged by the costs of developing a new drug. The truth is, drug companies are far from impoverished. EvaluatePharma’s most recent report shows that 2013 was the biggest year since 2009 for drug approvals. These new drugs will add nearly $25 billion to Big Pharma’s coffers by 2018, and prescription drug sales will exceed one trillion dollars by 2020.

The health care industry as a whole has more than enough money, with billions left to continue pursuing its interests in Washington.

Big Pharma Spends More on Lobbying Than Anyone

Since 1998, the industry spent more than $5 billion on lobbying in Washington, according to the Center for Responsive Politics. To put that in context, that’s more than the $1.53 billion spent by the defense industry and more than the $1.3 billion forked out by Big Oil.

From 1998 to 2013, Big Pharma spent nearly $2.7 billion on lobbying expenses — more than any other industry and 42 percent more than the second highest paying industry: insurance. And since 1990, individuals, lobbyists and political action committees affiliated with the industry have doled out $150 million in campaign contributions.

The world’s 11 largest drug companies made a net profit of $711.4 billion from 2003 to 2012. Six of these companies are headquartered in the United Sates: Johnson & Johnson, Pfizer, Abbot Laboratories, Merck, Bristol-Myers Squibb and Eli Lilly. In 2012 alone, the top 11 companies earned nearly $85 billion in net profits. According to IMS Health, a worldwide leader in health care research, the global market for pharmaceuticals is expected to top $1 trillion in sales by 2014.http://www.drugwatch.com/manufacturer/

But the large amount of cash Big Pharma bestows on government representatives and regulatory bodies is small when compared with the billions it spends each year on direct-to-consumer advertising. In 2012, the industry invested nearly $3.5 billion into marketing drugs on the Internet, TV, radio and other outlets. The United States is one of only two countries in the world whose governments allow prescription drugs to be advertised on TV (the other is New Zealand).

A single manufacturer, Boehringer Ingelheim, spent $464 million advertising its blood thinner Pradaxa in 2011. The following year, the drug passed the $1 billion sales mark. The money in this business appears to be well-spent.

No sane person can object to a company making a profit, it’s part of the American way, but the drug industry’s profits are excessive.  We paysignificantly more than any other country for the exact same drugs. Per capita drug spending in the U.S. is about 40 percent higher than Canada, 75 percent greater than in Japan and nearly triple the amount spent in Denmark.

So you might ask, “What can I do to get the lowest possible price for my  prescriptions?”  Well, there are a few things.  You can shop for the best price and because of the internet that’s become a whole lot easier.  You can look up a specific drug and find the best price at a pharmacy near you.  Here are two resources, I’m sure you can find a lot more https://www.lowestmed.com/Search#/  or http://www.goodrx.com/ All; you have to do is type in the drug you need and your zip code and it will find the price of that drug in pharmacies near you.

Transplant recipients might be interested in the cost of anti-rejection drugs.  The price is hard to stomach but easy to find.  In my zip code 32244 100 Mg Cyclosporine capsules range jn price from $526.00 at Wal Mart to $584 at Target.  If you are a heart pateint and take Carvedilol in my neighborhood it ranges from $4.00 at WalMart to $9.54 at Kmart . Lisinopril also has a wide range.  At the Publix Supermarket pharmacy near me it is FREE…that’s right FREE.  But at CVS it is $12.00.  Those price variations might make it worth a little longer drive to get a better bargain.

You can also get help with coupons which are an obvious choice to save money when grocery or clothes shopping, but they’re often overlooked as a way to cut costs of over-the-counter and prescription drugs.  Manufactures frequently offer one time and repeat coupons that can save consumers hundreds of dollars on their medicines.  “For our family it has been incredibly effective [in saving money] for a number of regular prescriptions,” says Stephanie Nelson, founder of the coupon website CouponMom.com.

The costs of prescription drugs and over-the-counter medications have been steadily rising and patients facing tight budgets are often forced to make hard decisions when it comes to what they can afford.

The savings vary by manufacturer, but according to Nelson, many companies offer discounts at each prescription refill while others offer discount cards that take $20 off co-pays. Others offer one-time coupons to cover the first use of a drug.

Consumer Reports Magazine says that there are other ways to save money, too.  Whichever drugstore or pharmacy you use, choosing generics over brand-name drugs will save you money. Talk to your doctor, who may be able to prescribe lower-cost alternatives in the same class of drug. In addition, follow these tips.

1. Request the lowest price.Our analysis showed that shoppers didn’t always receive the lowest available price when they called the pharmacy. Sometimes they were given a discounted price, and other times they were quoted the list price. Be sure to explain—whether you have insurance or not—that you want the lowest possible price. Our shoppers found that student and senior discounts may also apply, but again, you have to ask.
2. Leave the city.Grocery-store pharmacies and independent drugstores sometimes charge higher prices in urban areas than in rural areas. For example, our shoppers found that for a 30-day supply of generic Actos, an independent pharmacy in the city of Raleigh, N.C., charged $203. A store in a rural area of the state sold it for $37.
3. Get a refill for 90 days, not 30 days.Most pharmacies offer discounts on a three-month supply.
4. Consider paying retail.At Costco, the drugstore websites, and a few independents, the retail prices were lower for certain drugs than many insurance copays.
5. Look for additional discounts.All chain and big-box drugstores offer discount generic-drug programs, with some selling hundreds of generic drugs for $4 a month or $10 for a three-month supply. Other programs require you to join to get the discount. (Restrictions apply and certain programs charge annual fees.)
6. Consumer Reports goes on to say that “although the low costs we found at a few stores could entice you to get your prescriptions filled at multiple pharmacies based only on price, our medical consultants say it’s best to use a single pharmacy. That keeps all of the drugs you take in one system, which can help you avoid dangerous drug interactions.”

Finally, what do you do if you’ve done the shopping, used coupons, followed all of the Consumer Report Tips and are still unable to pay for your prescriptions.  Well, there is some limited assistance. Here are some resources.

1. http://www.medicare.gov/pharmaceutical-assistance-program/

2.http://www2.nami.org/Content/ContentGroups/Helpline1/Prescription_Drug_Patient_Assistance_Programs.htm

3. http://healthfinder.gov/rxdrug

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Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,200 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.  You can register to be a donor at http://www.donatelife.net.  It only takes a few minutes.

Chiropractic Manipulation — What is it and Does It Work?

By Bob Aronson

When I was growing up in Chisholm, Minnesota my dad swore that a chiropractor did more for his aching back than anyone else.  Dad was a meat cutter (he despised the term “Butcher” because he butchered nothing) and carried quarters of beef from the truck into his supermarket meat cooler.  Those things are heavy, bulky and very hard to handle and as a result he suffered back problems all his life.  Sometimes he could barely get out of bed he hurt so badly.  When that happened he would call Dr. Cole who, like all doctors then, made house calls.

My mom had an old fashioned, very heavy, super sturdy all wood ironing board set up in the living room and that’s what Doc Cole would use as a treatment bed.  Dad would lie face down on that old ironing board and Doc Cole would begin doing whatever manipulation Chiropractors do.  I don’t remember a time when it didn’t work.  Dad always felt better and was back at work the next day, but the pain always returned.  That’s the sum total of my experience with Chiropractors.  I have never been to see one or been in the care of a Chiropractor nor do I know anyone who has.

Here is the definition of the treatment as provided by the American Chiropractic Association (ACA).   Chiropractic is a health care profession that focuses on disorders of the musculoskeletal system and the nervous system, and the effects of these disorders on general health.  Chiropractic care is used most often to treat neuromusculoskeletal complaints, including but not limited to back pain, neck pain, pain in the joints of the arms or legs, and headaches.

Doctors of Chiropractic – often referred to as chiropractors or chiropractic physicians – practice a drug-free, hands-on approach to health care that includes patient examination, diagnosis and treatment. Chiropractors have broad diagnostic skills and are also trained to recommend therapeutic and rehabilitative exercises, as well as to provide nutritional, dietary and lifestyle counseling (there is much more to the definition. You can read it here http://www.acatoday.org/level2_css.cfm?T1ID=13&T2ID=61

There is no shortage of definitions of the practice so “Cherry Picking” a few can be misleading but from what I can find, traditional medical science is becoming more accepting of the practice in recent years, but still seems to stop short of an endorsement.  Here is the definition of Chiropractic according to Medicine Net dot com. http://www.medterms.com/script/main/art.asp?articlekey=2706

Chiropractic: A system of diagnosis and treatment based on the concept that the nervous system coordinates all of the body’s functions, and that disease results from a lack of normal nerve function. Chiropractic employs manipulation and adjustment of body structures, such as the spinal column, so that pressure on nerves coming from the spinal cord due to displacement (subluxation) of a vertebral body may be relieved. Practitioners believe that misalignment and nerve pressure can cause problems not only in the local area, but also at some distance from it. Chiropractic treatment appears to be effective for muscle spasms of the back and neck, tension headaches, and some sorts of leg pain. It may or may not be useful for other ailments.

Not all chiropractors are alike in their practice. The International Chiropractors Association believes that patients should be treated by spinal manipulation alone while the American Chiropractors Association advocate a multidisciplinary approach that combines spinal adjustment with other modalities such as physical therapy, psychological counseling, and dietary measures. For some years the American Medical Association (AMA) opposed chiropractic because of what it termed a “rigid adherence to an irrational, unscientific approach to disease.” However, Congress amended the Medicare Act in 1972 to include benefits for chiropractic services and in 1978 the AMA modified its position on chiropractic.

So, now that we have defined terms the question is, “When should I choose a chiropractor to treat a condition, and which conditions can they successfully treat?”  The answer to that question depends entirely on who you talk to.  Even Chiropractors differ with one another on exactly what conditions they can and can’t treat.

Preston H. Long is a licensed Arizona Chiropractor who practiced for almost 30 years.  Be warned, his assessment of the Chiropractic profession is quite negative.

Long has testified at about 200 trials, performed more than 10,000 chiropractic case evaluations, and served as a consultant to several law enforcement agencies. He is also an associate professor at Bryan University, where he teaches in the master’s program in applied health informatics.  What follows is just a half dozen bullet points from a blog he wrote titled, “20 Things Most Chiropractors Won’t Tell You.”(I Bob Aronson selected only the first six points and edited them for brevity) you can read the entire unedited version here http://edzardernst.com/2013/10/twenty-things-most-chiropractors-wont-tell-you/

Have you ever consulted a chiropractor? Are you thinking about seeing one? Do you care whether your tax and health-care dollars are spent on worthless treatment? If your answer to any of these questions is yes, there are certain things you should know.

 1. Chiropractic theory and practice are not based on the body of knowledge related to health, disease, and health care that has been widely accepted by the scientific community.

Most chiropractors believe that spinal problems, which they call “subluxations,” cause ill health and that fixing them by “adjusting” the spine will promote and restore health. The extent of this belief varies from chiropractor to chiropractor. Some believe that subluxations are the primary cause of ill health; others consider them an underlying cause. Only a small percentage (including me) reject these notions and align their beliefs and practices with those of the science-based medical community. The ramifications and consequences of subluxation theory will be discussed in detail throughout this book.

 2. Many chiropractors promise too much.

The most common forms of treatment administered by chiropractors are spinal manipulation and passive physiotherapy measures such as heat, ultrasound, massage, and electrical muscle stimulation. These modalities can be useful in managing certain problems of muscles and bones, but they have little, if any, use against the vast majority of diseases. But chiropractors who believe that “subluxations” cause ill health claim that spinal adjustments promote general health and enable patients to recover from a wide range of diseases. Some have a hand out that improperly relates “subluxations” to a wide range of ailments that spinal adjustments supposedly can help. Some charts of this type have listed more than 100 diseases and conditions, including allergies, appendicitis, anemia, crossed eyes, deafness, gallbladder problems, hernias, and pneumonia.

3. Our education is vastly inferior to that of medical doctors.

I rarely encountered sick patients in my school clinic. Most of my “patients” were friends, students, and an occasional person who presented to the student clinic for inexpensive chiropractic care. Most had nothing really wrong with them. In order to graduate, chiropractic college students are required to treat a minimum number of people. To reach their number, some resort to paying people (including prostitutes) to visit them at the college’s clinic.

4. Our legitimate scope is actually very narrow.

Appropriate chiropractic treatment is relevant only to a narrow range of ailments, nearly all related to musculoskeletal problems. But some chiropractors assert that they can influence the course of nearly everything. Some even offer adjustments to farm animals and family pets.

 5. Very little of what chiropractors do has been studied.

Although chiropractic has been around since 1895,  little of what we do meets the scientific standard through solid research. Chiropractic apologists try to sound scientific to counter their detractors, but very little research actually supports what chiropractors do.

6. Unless your diagnosis is obvious, it’s best to get diagnosed elsewhere.

During my work as an independent examiner, I have encountered many patients whose chiropractor missed readily apparent diagnoses and rendered inappropriate treatment for long periods of time. Chiropractors lack the depth of training available to medical doctors. For that reason, except for minor injuries, it is usually better to seek medical diagnosis first.

Obviously the previous report is pretty damning but the author’s views are not universally shared.  The problem with finding positive reports about the Chiropractic profession is that there are very few traditional double blind placebo studies.  Double blind studies are the “Gold Standard” in medicine.  Most of the supporting evidence for Chiropractic medicine is of the testimonial variety otherwise known as “Anecdotal” evidence. Often you will see ads that suggest 9 out of 10 who tried something got relief and while that sounds good, it is anecdotal, not double blind and that’s why Chiropractors are suspect in the eyes of the medical profession, even though Medical Doctors will on occasion for specific ailments send their patients to Chiropractors.

Here’s an evaluation of the top ten Chiropractic studies of 2013…it is not positive because, the author says, the studies were not really studies. http://www.sciencebasedmedicine.org/top-10-chiropractic-studies-of-2013/

The Medical Profession Does Recognize that Chiropractic Manipulation Can Help.

So, what about the good side of the profession? Where’s the evidence that Chiropractic manipulation of the spine actually has lasting benefits?

I searched for a long time and the best non anecdotal defense I could find for the Chiropractic profession was in Web MD. You can read all of it here, but note that the endorsement is strictly for back pain. http://www.webmd.com/pain-management/guide/chiropractic-pain-relief

Among people seeking back pain relief alternatives, most choose chiropractic treatment. About 22 million Americans visit chiropractors annually. Of these, 7.7 million, or 35%, are seeking relief from back pain from various causes, including accidents, sports injuries, and muscle strains. Other complaints include pain in the neck, arms, and legs, and headaches.

Learn The Truth About Back Pain Causes and Treatments

What Is Chiropractic?                                       ,

Chiropractors use hands-on spinal manipulation and other alternative treatments, the theory being that proper alignment of the body’s musculoskeletal structure, particularly the spine, will enable the body to heal itself without surgery or medication. Manipulation is used to restore mobility to joints restricted by tissue injury caused by a traumatic event, such as falling, or repetitive stress, such as sitting without proper back support.

Chiropractic is primarily used as a pain relief alternative for muscles, joints, bones, and connective tissue, such as cartilage, ligaments, and tendons. It is sometimes used in conjunction with conventional medical treatment.

The initials “DC” identify a chiropractor, whose education typically includes an undergraduate degree plus four years of chiropractic college.

What Does Chiropractic for Back Pain Involve?

A chiropractor first takes a medical history, performs a physical examination, and may use lab tests or diagnostic imaging to determine if treatment is appropriate for your back pain.

The treatment plan may involve one or more manual adjustments in which the doctor manipulates the joints, using a controlled, sudden force to improve range and quality of motion. Many chiropractors also incorporate nutritional counseling and exercise/rehabilitation into the treatment plan. The goals of chiropractic care include the restoration of function and prevention of injury in addition to back pain relief.

What Are the Benefits and Risks of Chiropractic Care?

Spinal manipulation and chiropractic care is generally considered a safe, effective treatment for acute low back pain, the type of sudden injury that results from moving furniture or getting tackled. Acute back pain, which is more common than chronic pain, lasts no more than six weeks and typically gets better on its own.

Research has also shown chiropractic to be helpful in treating neck pain and headaches. In addition, osteoarthritis and fibromyalgia may respond to the moderate pressure used both by chiropractors and practitioners of deep tissue massage.

Studies have not confirmed the effectiveness of prolotherapy or sclerotherapy for pain relief, used by some chiropractors, osteopaths, and medical doctors, to treat chronic back pain, the type of pain that may come on suddenly or gradually and lasts more than three months. The therapy involves injections such as sugar water or anesthetic in hopes of strengthening the ligaments in the back.

People who have osteoporosis, spinal cord compression, or inflammatory arthritis, or who take blood-thinning medications should not undergo spinal manipulation. In addition, patients with a history of cancer should first obtain clearance from their medical doctor before undergoing spinal manipulation.

All treatment is based on an accurate diagnosis of your back pain. The chiropractor should be well informed regarding your medical history, including ongoing medical conditions, current medications, traumatic/surgical history, and lifestyle factors. Although rare, there have been cases in which treatment worsened a herniated or slipped disc, or neck manipulation resulted in stroke or spinal cord injury. To be safe, always inform your primary health care provider whenever you use chiropractic or other pain relief alternatives.

On my OTI Facebook group I asked for individual experiences with chiropractors and got very few, most were positive but general in nature offering few details.

Other Non-Traditional Remedies

There are other non-traditional remedies for back pain that we have not mentioned here.  Below you will find several that were listed in “About dot com. “ For the full list of 15 options click on this link. http://altmedicine.about.com/od/chronicpain/a/back_pain.htm

 Acupuncture

A 2008 study published in Spine found “strong evidence that acupuncture can be a useful supplement to other forms of conventional therapy” for low back pain. After analyzing 23 clinical trials with a total of 6,359 patients, the study authors also found “moderate evidence that acupuncture is more effective than no treatment” in relief of back pain. The authors note that more research is needed before acupuncture can be recommended over conventional therapies for back pain.

 

Just how does acupuncture work? According totraditional Chinese medicine, pain results from blocked energy along energy pathways of the body, which are unblocked when acupuncture needles are inserted along these invisible pathways. Acupuncture may release natural pain-relieving opioids, send signals to the sympathetic nervous system, and release neurochemicals and hormones.

 See Also: Using Acupuncture to Help Relieve Chronic Pain | Sciatica – Causes, Symptoms, and Natural Treatments | What is Trigger Point Therapy?

Massage Therapy

In a 2009 research review published in Spine, researchers reviewed 13 clinical trials on the use of massage in treatment of back pain. The study authors concluded that massage “might be beneficial for patients with subacute and chronic nonspecific low back pain, especially when combined with exercises and education.” Noting that more research is needed to confirm this conclusion, the authors call for further studies that might help determine whether massage is a cost-effective treatment for low back pain.

Massage therapy may also alleviate anxiety and depression associated with chronic pain. It is the most popular natural therapy for low back pain during pregnancy.

The Alexander Technique

Alexander Technique is a type of therapy that teaches people to improve their posture and eliminate bad habits such as slouching, which can lead to pain, muscle tension, and decreased mobility.

 There is strong scientific support for the effectiveness of Alexander Technique lessons in treatment of chronic back pain, according to a research review published in the International Journal of Clinical Practice in 2012. The review included one well-designed, well-conducted clinical trial demonstrating that Alexander Technique lessons led to significant long-term reductions in back pain and incapacity caused by chronic back pain. These results were broadly supported by a smaller, earlier clinical trial testing the use of Alexander Technique lessons in treatment of chronic back pain.

You can learn Alexander technique in private sessions or group classes. A typical session lasts about 45 minutes. During that time, the instructor notes the way you carry yourself and coaches you with verbal instruction and gentle touch.

Hypnotherapy

Also referred to as “hypnosis,” hypnotherapy is a mind-body technique that involves entering a trance-like state of deep relaxation and concentration. When undergoing hypnotherapy, patients are thought to be more open to suggestion. As such, hypnotherapy is often used to effect change in behaviors thought to contribute to health problems (including chronic pain).

Preliminary research suggests that hypnotherapy may be of some use in treatment of low back pain. For instance, a pilot study published in the International Journal of Clinical and Experimental Hypnosis found that a four-session hypnosis program (combined with a psychological education program) significantly reduced pain intensity and led to improvements in mood among patients with chronic low back pain.

 Balneotherapy

One of the oldest therapies for pain relief, balneotherapy is a form of hydrotherapy that involves bathing in mineral water or warm water.

For a 2006 report published in Rheumatology, investigators analyzed the available research on the use of balneotherapy in treatment of low back pain. Looking at five clinical trial, the report’s authors found “encouraging evidence” suggesting that balneotherapy may be effective for treating patients with low back pain. Noting that supporting data are scarce, the authors call for larger-scale trials on balneotherapy and low back pain.

Dead Sea salts and other sulfur-containing bath salts can be found in spas, health food stores, and online. However, people with heart conditions should not use balneotherapy unless under the supervision of their primary care provider.

Meditation

An ancient mind-body practice, meditation has been found to increase pain tolerance and promote management of chronic pain in a number of small studies. In addition, a number of preliminary studies have focused specifically on the use of meditation in management of low back pain. A 2008 study published in Pain, for example, found that an eight-week meditation program led to an improvement of pain acceptance and physical function in patients with chronic low back pain. The study included 37 older adults, with members meditating an average of 4.3 days a week for an average of 31.6 minutes a day.

 Although it’s not known how meditation might help relieve pain, it’s thought that the practice’s ability to induce physical and mental relaxation may help keep chronic stress from aggravating chronic pain conditions.

One of the most commonly practiced and well-studied forms of meditation is mindfulness meditation.

Tai Chi

Tai chi is an ancient martial art that involves slow, graceful movements and incorporates meditation and deep breathing. Thought to reduce stress, tai chi has been found to benefit people with chronic pain in a number of small studies.

 Although research on the use of tai chi in treatment of back pain is somewhat limited, there’s some evidence that practicing tai chi may help alleviate back pain to some degree. The available science includes a 2011 study published in Arthritis Care & Research, which found that a 10-week tai chi program reduced pain and improved functioning in people with long-term low back pain symptoms. The study involved 160 adults with chronic low back pain, half of whom participated in 40-minute-long tai chi sessions 18 times over the 10-week period.

 Music Therapy

Music therapy is a low-cost natural therapy that may reduce some of the stress of chronic pain in conjunction with other treatment. Studies find that it may reduce the disability, anxiety, and depression associated with chronic pain.

 A 2005 study published in Annals of Physical and Rehabilitation Medicine evaluated the influence of music therapy in hospitalized patients with chronic back pain. Researchers randomized 65 patients to receive, on alternate months, physical therapy plus four music therapy sessions or physical therapy alone and found that music significantly reduced disability, anxiety, and depression

 Conclusion

It is difficult at best to arrive at a conclusion about the effectiveness of Chiropractic manipulation for two reasons. 1) there are very few real scientific studies and 2) The members of the profession don’t even seem to agree on just when and on which conditions Chiropractors can offer lasting relief.  I can only conclude with this thought.  At one time Chiropractors were ridiculed by the medical profession and not covered by health insurance.  Now, that has changed and the profession seems to be enjoying a degree of legitimacy It has never before had.

If you will take anecdotal evidence as scientific proof then Chiropractors are very effective.  If you prefer to make a decision based on scientific studies…well, the jury may still be out.

The bottom line is quite simple.  If you have been to a Chiropractor and the visit or visits have resulted in relief from what ails you, then keep going.  You are the best judge of what’s right for you.

 

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Hospital Errors — The Third Leading Cause of Death in the U.S.

By Bob Aronson

When your life has been saved in hospitals several times as mine has,  it is difficult to write a blog that is critical of those institutions but, it is just as difficult to ignore the facts.  As a writer who has made a commitment to provide accurate and timely information to his readers it would be irresponsible to do so. 

This blog is about and for pre and post-transplant patients, their families, donors, donor families, caregivers and friends.  Those of us who are awaiting transplants or who have had them spend an inordinate amount of time in hospitals and clinics.  Our compromised immune systems make us far more susceptible to a myriad of diseases and problems than the average patient and that means we have to be more alert and aware of our surroundings.  It is for that reason that I am posting this information.

 I did not make up the numbers you are about to read.  They are available for everyone to see and to analyze through the links I have provided.  Your comments are not only welcome, they are encouraged.

Never Events, Hospital Acquired Conditions and Sentinel Events

Heart disease and cancer are the number one and two causes of death in the United States.  Number three is medical errors. The very people who are supposed to be experts in saving lives are also responsible for thousands of deaths.

Medical errors in hospitals are killing us faster than chronic lower respiratory diseases, stroke (cerebrovascular diseases), accidents of all kinds, Alzheimer’s disease and diabetes combined.   The very people we trust our lives to – are not only contributing to our deaths they don’t seem to be learning from their mistakes because the problem appears to be getting worse.   While many hospitals claim they are making progress the national numbers don’t show it.  The evidence to the contrary is overwhelming.  And — one cannot help but believe that the problem is even worse than is stated in this posting because there is no system in the U.S. for reporting and tracking medical errors and their results.  Voluntary reporting is spotty and incomplete so we are left with educated guestimates and they are frightening.

In 1999, the Institute of Medicine published the “To Err Is Human” report.  It generated huge front page headlines everywhere by estimating that nearly 100,000 people die every year as a result of hospital errors.  At first there was widespread denial in the medical community but no longer.  The medical profession accepts that number.  The problem is that the number is wrong.

In 2010 another number was announced.  The Office of the U.S. Inspector General for Health and Human Services said that poor hospital care contributed to the deaths of 180,000 patients in Medicare alone in any given year…  Note — they said Medicare alone!  But — that number is wrong, too.  The story is about to get much worse.

A study published in September of 2013 in the Journal of Patient Safety says the numbers may be much higher.  They say that between 210,000 and 440,000 patients die in hospitals each year as the result of preventable errors. Please note that the numbers quoted in the preceding reports only refer to deaths.  None of the numbers I have seen say anything about the number of injuries caused by medical errors.

The new estimates were the result of work by John T. James, who works as a toxicologist at NASA’s Houston, Texas space center.  James also runs a group called Patient Safety America.  http://patientsafetyamerica.com/  James dedicated the site to his 19-year old son, John Alexander James, who he says, “Died as a result of uninformed, careless, and unethical care by cardiologists at a hospital in central Texas in the late summer of 2002.”

ProPublica an investigative journalism group asked three prominent patient safety researchers to review James’ study and all said his methods and findings were credible. http://www.propublica.org/  The American Hospital Association, though, rejects the number preferring to believe the number of 98,000 deaths from the 1999 report.

What’s the right number?  Nobody knows for sure but we do know it is not getting smaller. As stated earlier there is no standardized national reporting system on medical errors, who is affected and who makes them.

So we’re left with approximations, which are imperfect in part because of inaccuracies in medical records and the fact that a good many of the errors that take place are never reported. Hospitals and physicians have traditionally fought establishing a formal reporting system for fear of prosecution.  Instead they advocate a voluntary reporting system which begs the question, “Who is going to voluntarily admit to committing an error that resulted in a patient’s injury or death.”  I have to believe the number would be quite small.  Admissions of that nature could have extremely negative effects on careers and may even open the door to civil suits or criminal prosecution.  Perhaps I can be persuaded to think otherwise but I’ve seen nothing so far to indicate any voluntary system can work.

While the lay public calls them medical mistakes or errors the medical community has chosen to use different terminology.  They refer to their errors as “Never Events” or Hospital Acquired Conditions (HACs)    Never events are never supposed to happen – but they do and the onus is clearly on hospitals to do something about them.  The Government found that one way to force hospitals to deal with these problems is to refuse payment so for several years now Medicaid and Medicare do not pay for any Hospital Acquired Condition.

When I was a communications consultant I specialized in health care so I spent a great deal of time working in and around hospitals and clinics.  The great majority of them take the issue of patient safety very seriously and have implemented a multitude of actions to address the problem.  They all have preventive programs and systems on what to do when there is an error.  Most hospitals conduct a “Root Cause Analysis” every time there is a significant error so they can be sure the same error doesn’t happen again. They are working on the problem but patients owe it to themselves to always be alert and to question everything.  Hospitals need to know that we are watching very carefully and that we will report what we see and experience.

Here is a list of HACs or Never Events as prepared by the National Quality Forum (NQF).

Table. Never Events or Hospital Acquired Conditions

Surgical events

Surgery or other invasive procedure performed on the wrong body part

Surgery or other invasive procedure performed on the wrong patient

Wrong surgical or other invasive procedure performed on a patient

Unintended retention of a foreign object in a patient after surgery or other procedure

Intraoperative or immediately postoperative/post procedure death in an American Society of Anesthesiologists Class I patient

Product or device events

Patient death or serious injury associated with the use of contaminated drugs, devices, or biologics provided by the health care setting

Patient death or serious injury associated with the use or function of a device in patient care, in which the device is used for functions other than as intended

Patient death or serious injury associated with intravascular air embolism that occurs while being cared for in a health care setting

Patient protection events

Discharge or release of a patient/resident of any age, who is unable to make decisions, to other than an authorized person

Patient death or serious disability associated with patient elopement (disappearance)

Patient suicide, attempted suicide, or self-harm resulting in serious disability, while being cared for in a health care facility

Care management events

Patient death or serious injury associated with a medication error (e.g., errors involving the wrong drug, wrong dose, wrong patient, wrong time, wrong rate, wrong preparation, or wrong route of administration)

Patient death or serious injury associated with unsafe administration of blood products

Maternal death or serious injury associated with labor or delivery in a low-risk pregnancy while being cared for in a health care setting

Death or serious injury of a neonate associated with labor or delivery in a low-risk pregnancy

Artificial insemination with the wrong donor sperm or wrong egg

Patient death or serious injury associated with a fall while being cared for in a health care setting

Any stage 3, stage 4, or unstageable pressure ulcers acquired after admission/presentation to a health care facility

Patient death or serious disability resulting from the irretrievable loss of an irreplaceable biological specimen

Patient death or serious injury resulting from failure to follow up or communicate laboratory, pathology, or radiology test results

Environmental events

Patient or staff death or serious disability associated with an electric shock in the course of a patient care process in a health care setting

Any incident in which a line designated for oxygen or other gas to be delivered to a patient contains no gas, the wrong gas, or is contaminated by toxic substances

Patient or staff death or serious injury associated with a burn incurred from any source in the course of a patient care process in a health care setting

Patient death or serious injury associated with the use of restraints or bedrails while being cared for in a health care setting

Radiologic events

Death or serious injury of a patient or staff associated with introduction of a metallic object into the MRI area

Criminal events

Any instance of care ordered by or provided by someone impersonating a physician, nurse, pharmacist, or other licensed health care provider

Abduction of a patient/resident of any age

Sexual abuse/assault on a patient within or on the grounds of a health care setting

Death or significant injury of a patient or staff member resulting from a physical assault (i.e., battery) that occurs within or on the grounds of a health care setting

 Real Life Examples of Medical Mistakes

1. Wrong Heart and Lung Transplant.  One of the most tragic medical blunders ever took place at Duke University medical center in 2003, when surgeons transplanted a heart lung combination with the wrong blood type into 17-year-old Jesica Santillan.  Her body began to shut down almost immediately. The hospital somehow secured a second and proper matched heart lung combination for Jessica but it was too late and she died.  Dr. James Jaggers accepted responsibility for the tragic mistake, and Duke along with most other hospitals now have systems that require double checking the blood and tissue matches for transplants.

1. Souvenir of surgery.  In the year 2000 49 year old Donald Church had an abdominal tumor removed at the U of Washington Medical center in Seattle. While he left the hospital without the tumor, he had something that he didn’t have on admission — a 13-inch-long retractor had been left in Church’s abdomen by mistake. To make matters worse it was a repeat performance for the hospital, four other such occurrences had been documented there between 1997 and 2000. Fortunately, surgeons were able to remove the instrument but also agreed to pay Church nearly $100,000.

1. Healthy kidney removed.  Park Nicollet Methodist Hospital in Minnesota’s twin cities was the site of the next never event.  A man was admitted to have one of his kidneys removed due to a cancerous tumor.  Surgeons did just that but upon a post-surgical examination of the removed kidney they found no malignancy.  That’s when they discovered they had removed the wrong one.  We can’t report further because the family involved requested anonymity but Park Nicollet publicly admitted the error.

What Patients Can Do

A CNN report suggests that many medical errors could be prevented if patients were more aggressive about making sure their health care providers are more focused on what they are doing.

The cable network developed this list of what they call “10 Shocking Medical Mistakes and Ways to Not Become a Victim.

1. Mistake: Treating the wrong patient
• Cause: Hospital staff fails to verify a patient’s identity.
• Consequences: Patients with similar names are confused.
• Prevention: Before every procedure in the hospital, make sure the staff checks your entire name, date of birth and barcode on your wrist band.

2. Mistake: Surgical souvenirs
• Cause: Surgical staff miscounts (or fails to count) equipment used inside a patient during an operation.
• Consequences: Tools get left inside the body.
• Prevention: If you have unexpected pain, fever or swelling after surgery, ask if you might have a surgical instrument inside you.

3. Mistake: Lost patients
• Cause: Patients with dementia are sometimes prone to wandering.
• Consequences: Patients may become trapped while wandering and die from hypothermia or dehydration.
• Prevention: If your loved one sometimes wanders, consider a GPS tracking bracelet.

4. Mistake: Fake doctors
• Cause: Con artists pretend to be doctors.
• Consequences: Medical treatments backfire. Instead of getting better, patients get sicker.
• Prevention: Confirm online that your physician is licensed.

5. Mistake: The ER waiting game
• Cause: Emergency rooms get backed up when overcrowded hospitals don’t have enough beds.
• Consequences: Patients get sicker while waiting for care.
• Prevention: Doctors listen to other doctors, so on your way to the hospital call your physician and ask them to call the emergency room.
6. Mistake: Air bubbles in blood
• Cause: The hole in a patient’s chest isn’t sealed airtight after a chest tube is removed.
• Consequences: Air bubbles get sucked into the wound and cut off blood supply to the patient’s lungs, heart, kidneys and brain. Left uncorrected the patient dies.
• Prevention: If you have a central line tube in you, ask how you should be positioned when the line comes out.

7. Mistake: Operating on the wrong body part
• Cause: A patient’s chart is incorrect, or a surgeon misreads it, or surgical draping obscures marks that denote the correct side of the operation.
• Consequences: The surgeon cuts into the wrong side of a patient’s body.
• Prevention: Just before surgery, make sure you reaffirm with the nurse and the surgeon the correct body part and side of your operation.

8. Mistake: Infection infestation
• Cause: Doctors and nurses don’t wash their hands.
• Consequences: Patients can die from infections spread by hospital workers.
• Prevention: It may be uncomfortable to ask, but make sure doctors and nurses wash their hands before they touch you, even if they’re wearing gloves.

9. Mistake: Lookalike tubes
• Cause: A chest tube and a feeding tube can look a lot alike.
• Consequences: Medicine meant for the stomach goes into the chest.
• Prevention: When you have tubes in you, ask the staff to trace every tube back to the point of origin so the right medicine goes to the right place.

10. Mistake: Waking up during surgery
• Cause: An under-dose of anesthesia.
• Consequences: The brain stays awake while the muscles stay frozen. Most patients aren’t in any pain but some feel every poke, prod and cut.
• Prevention: When you schedule surgery, ask your surgeon if you need to be put asleep or if a local anesthetic might work just as well.

There are other steps you can take to protect yourself besides those offered by CNN.  For example:

Demand a hand-wash.   While hospitals try to be germ free it is hard when almost everyone who enters the building is sick.  It is a well-known fact that the best thing people can do to protect themselves from disease is frequent hand washing.  The potential for contamination is everywhere so you are well within your rights to ask personnel to wash their hands before touching you.  And…by the way, wash your hands frequently too.

Make sure your room is clean. Usually hospital rooms are thoroughly washed between patients but not as thoroughly if you are going to be there for a while.   If you are concerned with the state of your room ask for certain areas or all of it to be disinfected.  Transplant recipients in particular must be sure they are in as germ free an environment as possible.  Certainly if hospitalized they should always wear a face mask to protect themselves.  And, do your best to stay out of crowded areas like elevators.  If you must enter a crowded room, wear a face mask. All hospitals have them you just have to ask for one…

To be even more specific though, Patient Safety America suggestions these you do the following to stay safe http://patientsafetyamerica.com/truth-about-healthcare/

1. The single most important way you can help to prevent errors is to be an active member of your health care team.

That means taking part in every decision about your health care. Research shows that patients who are more involved with their care tend to get better results. Here are some specific tips, based on the latest scientific evidence about what works best.

Medicines

2. Make sure that all of your doctors know about everything you are taking. This includes prescription and over-the-counter medicines, and dietary supplements such as vitamins and herbs.

At least once a year, bring all of your medicines and supplements with you to your doctor. “Brown bagging” your medicines can help you and your doctor talk about them and find out if there are any problems. It can also help your doctor keep your records up to date, which can help you get better quality care.

3. Make sure your doctor knows about any allergies and adverse reactions you have had to medicines.

This can help you avoid getting a medicine that can harm you.

4. When your doctor writes you a prescription, make sure you can read it.

If you can’t read your doctor’s handwriting, your pharmacist might not be able to either.

5. Ask for information about your medicines in terms you can understand—both when your medicines are prescribed and when you receive them.

• What is the medicine for?
• How am I supposed to take it, and for how long?
• What side effects are likely? What do I do if they occur?
• Is this medicine safe to take with other medicines or dietary supplements I am taking?
• What food, drink, or activities should I avoid while taking this medicine?

6. When you pick up your medicine from the pharmacy, ask: Is this the medicine that my doctor prescribed?

A study by the Massachusetts College of Pharmacy and Allied Health Sciences found that 88 percent of medicine errors involved the wrong drug or the wrong dose.

7. If you have any questions about the directions on your medicine labels, ask.

Medicine labels can be hard to understand. For example, ask if “four doses daily” means taking a dose every 6 hours around the clock or just during regular waking hours.

8. Ask your pharmacist for the best device to measure your liquid medicine. Also, ask questions if you’re not sure how to use it.

Research shows that many people do not understand the right way to measure liquid medicines. For example, many use household teaspoons, which often do not hold a true teaspoon of liquid. Special devices, like marked syringes, help people to measure the right dose. Being told how to use the devices helps even more.

9. Ask for written information about the side effects your medicine could cause.

If you know what might happen, you will be better prepared if it does—or, if something unexpected happens instead. That way, you can report the problem right away and get help before it gets worse. A study found that written information about medicines can help patients recognize problem side effects and then give that information to their doctor or pharmacist.

Hospital Stays

10. If you have a choice, choose a hospital at which many patients have the procedure or surgery you need.

Research shows that patients tend to have better results when they are treated in hospitals that have a great deal of experience with their condition.

11. If you are in a hospital, consider asking all health care workers who have direct contact with you whether they have washed their hands.

Hand washing is an important way to prevent the spread of infections in hospitals. Yet, it is not done regularly or thoroughly enough. A recent study found that when patients checked whether health care workers washed their hands, the workers washed their hands more often and used more soap.

12. When you are being discharged from the hospital, ask your doctor to explain the treatment plan you will use at home.

This includes learning about your medicines and finding out when you can get back to your regular activities. Research shows that at discharge time, doctors think their patients understand more than they really do about what they should or should not do when they return home.

Surgery

13. If you are having surgery, make sure that you, your doctor, and your surgeon all agree and are clear on exactly what will be done.

Doing surgery at the wrong site (for example, operating on the left knee instead of the right) is rare. But even once is too often. The good news is that wrong-site surgery is 100 percent preventable. The American Academy of Orthopedic Surgeons urges its members to sign their initials directly on the site to be operated on before the surgery.

Other Steps You Can Take

14. Speak up if you have questions or concerns.

You have a right to question anyone who is involved with your care.

15. Make sure that someone, such as your personal doctor, is in charge of your care.

This is especially important if you have many health problems or are in a hospital.

16. Make sure that all health professionals involved in your care have important health information about you.

Do not assume that everyone knows everything they need to.

17. Ask a family member or friend to be there with you and to be your advocate (someone who can help get things done and speak up for you if you can’t).

Even if you think you don’t need help now, you might need it later.

18. Know that “more” is not always better.

It is a good idea to find out why a test or treatment is needed and how it can help you. You could be better off without it.

19. If you have a test, don’t assume that no news is good news.

Ask about the results.

20. Learn about your condition and treatments by asking your doctor and nurse and by using other reliable sources.

You may ask yourself upon reading all of this what the U.S. Food and Drug Administration (FDA) is doing to make hospitals safer.  Well, they can’t be in every hospital all the time to watch everything and…that’s not their role.  The FDA is probably not doing enough to protect us, there’s no way you can satisfy everyone but they are doing a few things that could make a huge difference.  One of which is to eliminate drug name confusion.

To minimize confusion between drug names that look or sound alike, the FDA reviews about 300 drug names a year before they are marketed. “About one-third of the names that drug companies propose are rejected,” says Phillips. The agency tests drug names with the help of about 120 FDA health professionals who volunteer to simulate real-life drug order situations. “FDA also created a computerized program that assists in detecting similar names and that will help take a more scientific approach to comparing names,” Phillips says.

After drugs are approved, the FDA tracks reports of errors due to drug name confusion and spreads the word to health professionals, along with recommendations for avoiding future problems. For example, the FDA has reported errors involving the inadvertent administration of methadone, a drug used to treat opiate dependence, rather than the intended Metadate ER (methylphenidate) for the treatment of attention-deficit/hyperactivity disorder (ADHD). One report involved the death of an 8-year-old boy after a possible medication error at the dispensing pharmacy. The child, who was being treated for ADHD, was found dead at home. Methadone substitution was the suspected cause of death. Some FDA recommendations regarding drug name confusion have encouraged pharmacists to separate similar drug products on pharmacy shelves and have encouraged physicians to indicate both brand and generic drug names on prescription orders, as well as what the drug is intended to treat.

The last time the FDA changed a drug name after it was approved was in 2004 when the cholesterol-lowering medicine Altocor was being confused with the cholesterol-lowering medicine Advicor. Now Altocor is called Altoprev, and the agency hasn’t received reports of errors since the name change. Other examples of drug name confusion reported to the FDA include:

• Serzone (nefazodone) for depression and Seroquel (quetiapine) for schizophrenia
• Lamictal (lamotrigine) for epilepsy, Lamisil (terbinafine) for nail infections, Ludiomil (maprotiline) for depression, and Lomotil (diphenoxylate) for diarrhea
• Taxotere (docetaxel) and Taxol (paclitaxel), both for chemotherapy
• Zantac (ranitidine) for heartburn, Zyrtec (cetirizine) for allergies, and Zyprexa (olanzapine) for mental conditions
• Celebrex (celecoxib) for arthritis and Celexa (citalopram) for depression.

For more information on the FDA and what they are doing click on this link http://www.fda.gov/

The bottom line on medical errors is activist patients.  Don’t sit by quietly when you perceive something to be wrong with your care or the care of someone near and dear to you.  Speak up, tell someone about your concerns.  Every city and state has some sort of health department so if you see something wrong speak up and tell the appropriate authority starting with the hospital.

Most importantly, though, be aggressive and knowledgeable about your own health care.  Don’t be afraid to ask for second opinions, to question physicians, nurses and other practitioners.  Force your health care provider to speak to you in plain English and if you don’t understand ask for clarification.  Hospital personnel work for you so they have a responsibility to respond to your concerns in as thorough and clear a manner as possible. The only way hospitals will really change for the better is for citizens, patients like you and me to speak up and let them know we know.

-0-

Bob Aronson is a 2007 heart transplant recipient, the founder and primary author of the blogs on this site and the founder of Facebook’s over 3,000 member Organ Transplant Initiative group.

Now retired and living in Jacksonville, Florida with his wife Robin he spends his time advocating for patients with end stage diseases and for organ recipients.  He is also active in helping his wife with her art business at art festivals and on her Rockin Robin Prints site on Etsy. 

Bob is a former journalist, Governor’s Communication Director and international communications consultant.

Brain Death, Organ Donation and Family Disagreement –How Is It Handled?

A note from Bob Aronson

This account of the organ donation process was published by the American Medical Association in 2005.  While some of the information is dated the process described here is for the most part still followed in most states by medical professionals and Organ Procurement Organizations (OPOs).

This story is a very graphic description of the difficulties that organ transplant representatives can face when a patient is declared brain dead and is found to have a donor card in their wallet.  The biggest change since this account was published is that most states have passed laws that allow OPOs to proceed with organ recovery with or without family consent if the donor is registered as such.  It is also true, though, that many OPOs still ask families to honor their loved one’s wishes and although rare, some families object.

I have worked very closely with OPOs in the past and can testify first hand to the great amount of preparation and training their people experience in order to handle situations just like the one described here.  The OPO people who contact families when a loved one is dying or declared brain dead are very special people endowed with natural compassion and empathy.  I am in awe of these professionals who daily are called upon to explain to grieving families how their gift of life can help so many 0thers.

This is our last blog of 2013.  It is fitting that we close the year honoring OPOs and the many wonderful people who work so hard to save lives and bring comfort to grieving families.

On behalf of Bob’s Newheart and Organ Transplant Initiative on Facebook we say thank you OPOs you are doing God’s work and we appreciate your professionalism and compassion.  Personally I offer my most sincere gratitude from the bottom of my donor’s heart.

Family Disagreement Over Organ Donation

American Medical Association

Virtual Mentor. September 2005, Volume 7, Number 9.

Clinical Cases

Commentary by Douglas W. Hanto, MD, PhD, Thomas G. Peters, MD, and by Richard J. Howard, MD, PhD, and Danielle Cornell, BSN

The sound of Sam’s pager suddenly awakens him. A third-year medical student, Sam is in the midst of his trauma surgery rotation. He rushes to the trauma department and learns that his next patient, Justin Lewis, is a 20-year-old male who was in a major automobile accident. Tested en route to the hospital, Justin had a Glasgowcoma scale score of 3. As Justin is brought to the trauma room, the paramedics tell the attending physician, Dr. Hardy, what they know about the accident. According to the EMTs, Justin fell out of a car that was traveling 70 miles per hour and landed on this head. After an extensive emergency room workup, Justin is declared brain dead. Prior to disconnecting him from the ventilator, the ER staff discovers that he has an organ donor card in his wallet. Familiar with the organ donation procedures, Sam calls the organ procurement agency while Dr. Hardy tells Justin’s family the news.

An hour later, Mr. Sterling, a representative from the organ procurement organization arrives at the hospital and introduces himself to the family. Justin’s father tells Mr. Sterling that his son definitely wanted to donate his organs, but Justin’s mother interjects. She is adamantly opposed to anyone’s taking organs out of her son.

Meanwhile, Sam asks Dr. Hardy what the plan for the patient is. Dr. Hardy says that Justin will remain on mechanical ventilation until a final decision is made regarding donation of his organs.

Commentary 1

by Douglas W. Hanto MD, PhD

When the death of a patient is imminent or has occurred, as in the case of Justin, all hospitals that receive Medicare and Medicaid dollars are required by the Conditions of Participation published by the Centers for Medicare and Medicaid Services to have protocols in place for notifying the local federally designated organ procurement organization (OPO). This notification is mandatory whether the patient has a signed organ donor card or not. In Justin’s case, even if the ER staff had not found an organ donor card in his wallet, Sam would have been correct in calling the OPO. The OPO determines the medical suitability of the potential donor and usually sends a trained organ donation coordinator to the hospital to review the patient’s records, speak to the family, clarify health-related information, and request permission for organ donation. Some OPOs have specially trained family counselors who request permission for donation from the family. If the family gives permission, the donation coordinator assumes the medical management of the donor, and all medical costs from the time of declared brain death are billed to the OPO, not to the patient’s insurance or family.

The refusal of families to grant permission is a major impediment to organ donation. Several factors have been shown to improve family consent rates. First, the request for organ donation should be separate—or “decoupled”—from the declaration of brain death. This allows the family time to understand and accept the concept of brain death. In this case, Justin’s mother may simply need more time to adjust and accept the death of her son. Second, the request for organs should be made by a trained OPO representative along with the hospital staff as a team. It is best that the physician or nurse caring for the patient not discuss organ donation with the family prior to OPO involvement. The hospital staff and OPO donation coordinator can work together to determine the best time to talk to the family. Third, the request should be made in a private and quiet setting. Higher consent rates have been shown to occur when these 3 procedures arefollowed [1].

Even when a patient has a signed organ donation card, the OPO oftenseeks family permission to proceed with donation. The Uniform Anatomical Gift Act (1968, revised 1987) established that a signed organ donation card is sufficient to proceed with donation, and it has been confirmed recently that such documents function legally as advance directives. In the UnitedStates, however, it is customary for the OPO to request permission from the next-of-kin due to fear of litigation.

Recently, several states have passed legislation establishing “first-person consent” whereby the family cannot override an individual’s documented desire to be an organ donor. Some states have established first-person consent registries for people interested in being deceased organ donors. This is based on the strong belief that the donor’s wishes should be adhered to. It is not dissimilar to a last will and testament that disposes of our personal property and assets after we die. Each year more states are passing first-person consent laws that are strongly supported by the OPOs and the transplant community.

Had Justin died in a state with first-person consent laws, the OPO would have informed the family of his pre-existing declaration to be an organ donor and would not have sought the family’s permission. First-person consent removes a burden from family members because they do not have to come to a decision while attempting to cope with the very stressful situation of the death of a relative. First-person consent also avoids the problem of family members’ disagreement, and it may benefit families later on: more than one-third of families whomade a decision themselves and declined to donate the organs subsequently regretted their decision [2].

In a case such as this one, where the mother and father disagree about organ donation, the donation coordinator would ask the mother why she was opposed to donation and would try to address her specific concerns. The coordinator would emphasize that her son had expressed a desire to donate and that his gift could save and improve the lives of several seriously ill patients. The coordinator would also try to dispel any myths about organ donation that Justin’s mother might have heard. It is important for her to understand that her son’s body will not be disfigured and that donation will not affect funeral arrangements or viewing of the body. Often times a hospital social worker or pastoral care representative can be called to counsel the family and resolve their disagreement. One of these individuals might have been able to help Justin’s mother agree to donation.

Because of the continued shortage of organs for transplantation, it has been argued that we should go beyond first-person consent and adopt the principle of “presumed consent.” Presumed consent has been legislated by many European countries with a resulting increase in organ donation rates [3]. Presumed consent is an “opt-out” policy in which everyone is considered an organ donor unless he or she registers opposition. This process contrasts with our current, “opt-in” system, in which the individual or next-of-kin must give explicit consent for organ donation. Individual choice is not removed in either case, but persons opting out have the additional responsibility of documenting their decisions. A recent analysis showed that the opt-out countries had a much higher organ donation rate than opt-in countries [4]. And in an online experiment, responders’ decisions about organ donation were dramatically influenced by whether the question was presented as an opt-in or opt-out choice; rates for donation doubled when the default position was opting out and documentation was needed to opt in; that is, to donate.

Once permission has been obtained, the donor is managed medically to maintain optimal organ function [5]. All organs are evaluated for their suitability for transplantation, the donor is screened for infectious diseases (eg, hepatitis, HIV), and blood and tissue types are obtained. The donor information is then entered into the national computer database maintained by UNOS (United Network for Organ Sharing) where it is matched with wait-listed patients. The computer produces a list of the potential recipients for each of the organs ranked by priority as determined by national organ allocation policies. At that point, the donor coordinator calls the transplant centers where prospective recipients are listed to ensure a recipient will be available and waiting for the organ. The organs are then removed in the hospital operating room, often by several surgical teams from different transplant centers in a manner that is respectful of the decedent and his or her family. The young patient in this case could potentially donate his heart, both lungs, liver, pancreas, both kidneys, and small intestine for transplantation,thereby benefiting as many as 8 recipients. He could help many more patients by being a tissue donor (corneas, skin, bone, blood vessels) as well. Many times families report great satisfaction after organ and tissue donation from knowing that so much good can result from so much pain.

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References

1. Gortmaker SL, Beasley CL, Sheehy E, et al. Improving the request process to increase family consent for organ donation. J Transpl Coord. 1998;8:210-217.
2. DeJong W, Franz HG, Wolfe SM, et al. Requesting organ donation: an interview study of donor and nondonor families. Am J Crit Care. 1998;7:13-23.
3. Gundle K. Presumed consent: an international comparison and possibilities for change in the United States. Camb Q Healthc Ethics. 2005;14:113-118.
4. Johnson EJ, Goldstein DG. Defaults and donation decisions. Transplantation. 2004;78:1713-1716.
5. Wood KE, Becker BN, McCartney JG, D’Alessandro AM, Coursin DB. Care of the potential organ donor. N Engl J Med. 2004;351:2730-2739.

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Douglas W. Hanto, MD, PhD, is the Lewis Thomas Professor of Surgery at Harvard Medical School and chief of the Division of Transplantation at Beth Israel Deaconess Medical Center in Boston, Massachusetts.

Commentary 2

by Thomas G. Peters, MD

Patient-centered ethical dilemmas often arise in a trauma surgery rotation. For the medical student, a sudden and perplexing ethical dilemma may actually open the door to solving certain clinical problems and issues of family interaction.

In this case, there is no question that the patient, a 20-year-old man who sustained a massive head injury, is dead. With cardiorespiratory function being sustained artificially, the emergency room and trauma surgery staff have appropriately assessed the patient, tested and ruled out any possibility of survival, and determined the hopelessness of the patient care situation. With such a dire determination, however, comes new promise: helping others by way of organ donation. The student is a witness not only to the consequences of severe trauma, but also to the process of consent for organ donation.

The case narrative indicates that the patient, Justin, carried what we presume is a recognized legal organ donor card. Such a document is generally believed to be sufficient to go forward with organ donation. Some states including Florida, Pennsylvania, and Texas, have determined that the organ donor card is an end-of-life document that is afforded as much standing as a will or advance health care directive. Therefore, the issue of consent and legality of organ donation should not be a dilemma considering that a 20-year-old man is past the age of majority—18—in most states.

A dilemma does arise, however, because Justin and his father favor organ donation, but his mother does not. She is adamantly opposed to anyone removing organs from her son, and the story appears to end with the attending physician noting that mechanical ventilation and other support measures will be carried on until an agreement is reached regarding organ donation.

The best-known way to prevent the conflict between the mother and the father is for families to discuss organ donation before any tragedy occurs. Consent disagreements almost never arise when a family has talked about the idea of postmortem organ donation and the intentions of family members are fully understood by all.

It appears, however, that no such discussion took place between Justin and his parents, so the medical staff faces a dilemma: whether or not to maintain mechanical and artificial support, which use critical hospital resources, while the family is further counseled regarding organ donation. In fact, most acute care units have experienced similar circumstances, and giving time to grieving families in the final hours of life, whether organ donation is to occur or not, is not unusual. So, support might be continued for several hours during which resolution of the family conflict would become an important and, perhaps, intense matter.

The medical care team must, to the greatest extent possible, remove itself from this conflict resolution process and rely upon the expertise of the organ procurement professionals. It is likely that the procurement coordinator has been in similar situations, has been trained to deal with them, and will be able to adequately resolve most of the issues to the satisfaction of all. This professional should be able to apply techniques of personal communication to persuade the mother that the wishes of her deceased son should be honored.

In the majority of such situations, the procurement coordinator begins by facilitating an empathic discussion among all concerned persons with the aim of reaching a consensus on what the decedent really may have wanted. The presence of an organ donor card itself, while sufficient to preclude the need for family consent to organ removal, does not always silence the objections or satisfy the concerns of those who would prefer that organ donation not occur. Thus, the mother who is objecting might be given time to explore the reasons for her opposition to organ donation before being confronted about her son’s wishes. The astute organ procurement coordinator will use techniques of active listening to engage the reluctant—or opposing—person and to allow full expression of his or her thoughts and feelings. It is never enjoyable to talk about recovering organs from a young person who has died unexpectedly. The waves of emotion that must overcome parents are best managed by those trained to listen and respond appropriately in such difficult family circumstances.

Over a period of several hours, the effective procurement coordinator will have established a relationship with the mother and permitted her to work through the early stages of grief and to have her questions regarding organ donation and transplantation answered. It is highly likely that the mother will ultimately come to the understanding that her son’s wishes should be honored, even if she opposes organ donation.

It is, of course, possible that the organ procurement specialist is not as talented as one would wish, or that the mother remains adamantly opposed to organ removal no matter what. In such a case, the organ procurement team is beset with a difficult decision: whether or not to go forward with organ recovery since the signed donor card is suitable consent, and, thus, leave the family in conflict. The family would be left in conflict if organs are not recovered anyway, since the father favors organ donation. In the circumstance of unsuccessful counseling, the organ procurement agency would need to examine the procedures and experiences that have allowed for the best outcome of potential donor families and others. In many such situations, organ recovery is accomplished even when objections persist. While the family dilemma goes on, lives of other critically ill persons will be saved by organs recovered from the dead trauma victim.

Thomas G. Peters, MD, is a professor of surgery and chief of the Transplant Service at the University of Florida Health Sciences Center in Jacksonville. In 1988, Dr. Peters organized and directed the Jacksonville Transplant Center at Methodist Medical Center and served as chairman of the Department of Surgery at Methodist Medical Center for 10 years. He was co-chief of surgery at the University of Florida and Shands Jacksonville from 1989 until 2001.

Commentary 3
by Richard J. Howard, MD, and Danielle Cornell, BSN

The death of most people who become deceased organ donors is sudden, unexpected, and frequently tragic. The families of these donors are almost never prepared for this unfortunate situation. In addition to dealing with an unexpected injury or intracerebral accident, the family must come to terms with the fact that their loved one is dead. They may have a difficult time accepting this since the patient has a heartbeat, a measurable blood pressure, produces urine, and has good skin color and other indications that suggest life. Many individuals (even physicians) do not understand the concept of brain death. And now someone the family has not seen before comes in from something called an organ procurement organization and asks permission to remove the organs of their son or mother or sister for transplantation. The stresses associated with the initial injury, the death, and now the request for organs cannot be underestimated and can be difficult for anyone who has not gone through this process to fully appreciate.

Yet organ donation can salvage a great deal of good from a tragic circumstance. Knowing that their loved one can save and improve the lives of other individuals through organ and tissue donation can be a source of great solace and comfort. The organ donation can become a living memory of and tribute to their relative.

In the example cited here a 20-year-old man, Justin Lewis, died in an automobile accident, and testing showed he was a suitable potential organ and tissue donor. In this particular case, it was discovered that he had signed an organ donor card. The Uniform Anatomical Gift Act (UAGA) of 1968 clearly indicates that a donor card signed in the presence of 2 witnesses is legally binding. The act was adopted by all states within 3 years. Many organ procurement organizations (OPOs), however, do not take advantage of this provision because they are concerned about their relations with the family as well as about potential legal disputes and adverse publicity that could result in a decline in organ donation should they act upon the donor’s consent—even though such worries have not proved to be an issue in most places.

States have responded to this concern, and legislation authorizing the donors intent, called “first-person consent,” has now been enacted in 42 states. These laws acknowledge that a documented donation decision (donor card, drivers’ license, donor registry, etc) that has not been revoked by the donor prior to death, is legally binding and does not require the consent of any other person upon death. Despite this legislation, many OPOs are still reluctant to pursue first-person consent. Fifteen years following the enactment of the UAGA, OPOs in only 4 states reported they were actively practicing first-person consent organ donation recoveries.

In the case of this 20-year-old designated donor, our organ procurement organization, would have modified its approach to the family. The staff would have notified the parents that their son had clearly showed his intent to be a donor by so designating on his driver’s license and that we planned to honor his wishes. Even if both parents disagree with organ donation, the signed organ donor card is sufficient permission for the OPO to recover organs for transplantation. We have had only a few differences of opinion with the donors’ legal next of kin in honoring first-person consent.

The case of Justin Lewis would not be unmanageable for an OPO that is actively pursuing first-person consent cases. The OPO staff must discuss organ donation and what it entails with the family and answer their questions in a supportive, non-confrontational, non-threatening manner. We have found that much of the objection to organ donation is due to lack of accurate information. For instance, some individuals believe that if organ or tissue donation occurs, there can be no viewing of the body afterwards. Some will agree to organ donation once they realize that a viewing can still take place and that no incisions will be made on the head or neck.

Parental or next-of-kin refusal often has less to do with the concept of organ donation than with control or authority for decision making for their injured and now dead relative. Building a relationship with the family by asking questions about what type of person their relative was can assist in establishing communication related to the patient; the importance of this relationship cannot be overstated. Having a sympathetic OPO coordinator or designated requester who is willing to take time with the family, hear their concerns, and answer questions frequently means the difference between obtaining permission and being met with refusal. Asking the parents if they understood what the physician told them about brain death also provides an opportunity for educating and trust-building.

Even if the OPO staff or other designated requestors aren’t negotiating with family members to obtain consent, they should still speak to the next-of-kin in a quiet room that is softly lit and has enough chairs so that no person is left standing. The number of people in the room should be limited to 1 or 2 family members. The more people who are in the room, the more likely someone will object to donation. It is important for the requestor staff to state that the adult decedent willingly made a choice to give the “gift of life” upon his or her death, and that the purpose of the meeting is to answer any questions they may have about the procedure and to ask some questions about the medical history of the donor.

Although the law is on the side of the designated donor, it is critical to procurement organizations, transplant centers, and recipients that the OPO make a concerted effort to establish a cooperative relationship with the family. Legal and public conflicts that could result in fewer donors must be avoided. Willing participation from the family will also enable the procurement coordinator to obtain a thorough medical and social history, and will allow him or her to explain the procedure fully, confirm that donation will not interfere with the funeral, clarify that the OPO will assume hospital costs related to the donation, and convey much other information.

Perhaps the most compelling reason to establish a positive relationship with the family of a potential donor is the benefit it offers to the future of organ donation. Working cooperatively with the donor family will result in a positive continued relationship. The surviving family members of a donor are known as donor families, and, in our mission to increase awareness of the need for more organ donors, donor families remain an unparalleled resource for promoting the message.

When an OPO makes the choice to recover organs from a designated donor against the family’s wishes, an ethical balancing act may ensue. Some would argue that the wishes of the surviving family members should be given primary consideration; that procuring organs from a deceased patient in opposition to the family’s desire will add to their grief, especially in the case of parents. But others will dispute that the surviving family members deserve primary consideration, arguing that the patient’s wishes to be an organ donor upon death must be honored. Is it ethical for the OPO to walk away from a patient and not honor the documented decision he or she made while alive? Is it defensible to decide not to attempt to place and procure organs for transplant because the family doesn’t agree with the decision the adult patient made during life? Finally, is it right to ignore the patient’s request because he can no longer speak for himself?

Would we deny living patients’ the right to decline blood products, to see their religious representative, or to decline cardiopulmonary resuscitation? The answer, simply, is no. People who make the decision to become donors during their lives have a right to have that decision carried out upon their death. It is not ethical for an OPO to refuse to recover organs only because the donor can no longer speak for himself or herself. We believe the wishes of someone who signs a donor card should be respected even if the family disagrees. And yet we realize there may be unique circumstances where pursuing first- person consent might not be in the best interest of the family or of the transplantation community. Every potential donor situation has unique aspects. While some OPOs err on the side of the designated donor, there is no 1 formula that will always guarantee a good outcome.

There are also times when a disagreement about donation cannot be resolved among family members (and where the donor has not indicated his wishes while alive). If a resolution is not attainable despite the best efforts of the OPO coordinator, it may be appropriate for the OPO to withdraw and make no further efforts to get those who object to donation to change their minds. In these situations the family usually comes to a consensus and refuses permission for donation. If, for example, the family stated that the patient, in the presence of his mother, girlfriend, or other family member, verbally revoked his decision to become a donor, the OPO would have to withdraw all attempts of obtaining consent for donation.

Richard J. Howard, MD, PhD, is the Robert H. and Kathleen M. Axline Professor of Surgery and head of the Division of Transplantation at the University of Florida. Dr. Howard is also the past president of the American Association of Transplant Surgeons and is a member of the Board of Directors of UNOS (United Network for Organ Sharing).

Danielle Cornell, BSN, is the executive director of LifeQuest Organ Recovery Services, the organ procurement organization (OPO) that serves northern Florida.

The people and events in this case are fictional. Resemblance to real events or to names of people, living or dead, is entirely coincidental. The viewpoints expressed on this site are those of the authors and do not necessarily reflect the views and policies of the AMA.

© 2005 American Medical Association. All Rights Reserved.\

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Bob Aronson is a 2007 heart transplant recipient and the author of most of the more than 200 Bob’s Newheart blogs.  On occasion we publish guest blogs and welcome submissions.  We cannot guarantee that your submission will be used and it will not be returned.  We reserve the right to edit guest blogs but will always give full credit to the author or source. 

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Foreigners are Getting American Organs…Should That Be Allowed?

From time to time we hear of a non-U.S. citizen getting an organ transplant at an American medical center having received the organ from the American donor pool.  Is that proper?  There’s more of it going on than you may suspect and transplant centers don’t talk about it much.

While I am the first to admit that my research of this topic is inadequate it still raises legitimate questions.  Why do we allow non-U.S. citizens  to get transplants here?  Shouldn’t American organs go to Americans?  Should donors be able to designate that they only want their organs to go to fellow citizens?

No one has made much of a fuss about our organs going to citizens of other countries until the Los Angeles Times  investigative report in 2008 uncovered the story of four Japanese gangsters who got liver transplants at the University of California, Los Angeles Medical Center.  That story put a burr under a lot of American Saddles but it still took the United Network For Organ Sharing (UNOS), which often moves at breakneck glacier speed, four years to decide to do something about it.  Just this year they decided that transplants involving recipients who are not U.S. citizens or residents will get closer scrutiny according to American Medical news” http://www.ama-assn.org/amednews/2012/07/16/prse0718.htm

“Under the policy adopted by the UNOS board of directors in late June, any transplant involving a recipient who is not a U.S. citizen or resident can be reviewed by the Organ Procurement and Transplantation Network  (OPTN).

Transplant centers will have to provide data to the OPTN. That information will include a recipient’s country of origin, the reason for seeking transplantation in the U.S. and how the procedure is being financed. Data on transplantation by citizenship status will be publicly reported.

Centers will be barred from entering contracts with foreign agencies or governments to provide transplantation services. Transplant centers must abide by OPTN/UNOS rules in order to be paid by Medicare.”

I don’t know about you, readers, but this report doesn’t really tell me what a review by OPTN could result in.  Like…could they deny the transplant?

Later in this post you will see more specifics but in the decade from 2000 through 2010 685 non-U.S. citizens got organ transplants here with organs coming from American donors.  What is bothersome to me is that when we sign up to be donors I think we do so assuming that our organs will go to fellow citizens.  That apparently is not always the case.

When you consider that about 20 U.S. Citizens die every day because there are not enough organs is it right that a rich foreigner (the great majority pay cash) can come here and take an organ that might otherwise have gone to one of us?  Why is there a rule that American Transplant Centers can list foreigners but they can make up no more than 5% of any center’s list?  And — is it true that some organs are given to illegal aliens?  We’ll attempt to answer those questions and more in this post.

Before we more completely address these important questions it is important to frame the issue of organ allocation and transplantation in the United States.  As much as we dislike the idea the fact is that we must ration human organs.  The gap between available organs and those who need them is so incredibly wide someone has to decide who does and doesn’t get them.

The most burning of questions in organ transplantation is this one; Who on the waiting lists should get transplants first: patients in the greatest need or those most likely to benefit?  Example.  If a choice has to be made between a 72 year old man has been diagnosed as almost immediately terminal unless he gets an heart transplant and a sick but much healthier 35 year old mother of three; who should get the heart?  It could be logically argued that the mother should get it because while not as sick as the man she is more likely to live much, much longer and therefore benefit the most.

As of this writing there are 116,835 candidates on the U.S. transplant waiting list.  From January through October of 2012 there were only 23,363 transplants done with the organs coming from 11,659 people.  It is obvious with virtually no study of the numbers that the gap between available organs and those who need them is monstrous.  And…think about this.  In those ten months from January through October of all the people who died in this country only 11,659 of them were acceptable donors (acceptable meaning among registered donors this number had organs healthy enough to be transplanted).

Determining who gets an available organ is not easy and the process is said to be “Blind” meaning patient conditions, age and other medical factors are known but not names or social status.  It is important to understand, too, that there are over 150 transplant centers in the United States (complete list here http://tinyurl.com/78qfesx) and each is allowed to decide which of their patients is placed on the national listing. Where there are general guidelines on who can be listed, there is no uniformity which has resulted in each transplant center developing their own criteria for adding patients to the ever growing number.

So how do you get on the transplant list anyway?  Well, to start you have to have a Doctor who thinks you are sick enough to be referred to a transplant center, but there are many factors involved one of which is what bioethicist Art Caplan calls the “Wallet biopsy.”  You have to prove that you can pay not only for the procedure but the follow-up care and the anti-rejection drugs you must take for the rest of your life.  Those drugs can be very expensive…in excess of $1,000 a month..

Even if patients have enough money to qualify for a transplant, the transplant center must also deem them good candidates psychologically and socially and the criteria vary widely.  Among the factors that transplant centers weigh as contraindications are not having a spouse or relative or close friend as a caregiver, having suffered a recent death or loss of someone close to you, having a history of criminal behavior or mental illness like schizophrenia or depression, a history of alcoholism or drug dependency, having attempted suicide, having a personality disorder and mental retardation.

With all those qualifications it is the first one, the ability to pay, that may determine your success in getting listed and then getting an organ.  So when foreigners come to the U.S. with a boatload of cash it is possible that some transplant centers will make every effort to accommodate their needs including manipulating numbers so that they stay within the 5% restriction.

But…let’s look at the 5%.  The number only indicates a limit on foreign transplants it does not say that 5% of all transplants go to foreigners and with the New UNOS rules the number of foreign transplants could diminish.  My research on this subject revealed that from 2000 through 2010, 685 non-citizen, non-residents (aka foreign nationals) were given deceased donor kidney transplants in the US.  http://livingdonorsarepeopletoo.com/kidneys-given-to-non-us-citizens-non-residents-2000-2010/

Now what about that question on illegal immigrants getting tax paid organ transplants in the U.S.?  Research indicates that while it has happened it is rare and in the case of a 2012 kidney transplant at Loyola University in Chicago the transplant was funded by Loyola.  http://articles.chicagotribune.com/2012-12-09/news/ct-met-illegal-immigrant-kidney-transplant-20121209_1_illegal-immigrant-kidney-transplant-liver-transplant.  Now, one could argue that Loyola money is private money but at the same time the school certainly receives tax dollars for a myriad of uses so the use of tax dollars, however tangential, is certainly possible.  More importantly, though, it is clear that an American donor’s organ was given to an illegal alien meaning that an American Citizen did not get it.  To me…that’s just not right.

I find it disgraceful that any American citizen should be denied an organ transplant for any reason but to be denied an organ because it went to someone from another country just doesn’t seem right.  I did a considerable amount of “googleing” to find a satisfactory explanation for the practice and came up empty handed.  Having been on a list and knowing of the shortage scared me.  Had known that someone from another country might get an American organ before I did, would have terrified and enraged me.  I just don’t think its right.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

The Ultimate Hypocrisy — Government Profiting on Killer Tobacco

Bob’s Newheart and our Facebook group Organ Transplant Initiative (OTI) support and encourage organ donation and potential biological and mechanical alternatives we also believe that the best solution for the organ shortage is to reduce the demand.

Tobacco products along with alcohol are two of the greatest contributors to organ damage and the need for transplants.  If we could get people to stop using those substances the demand for transplants would diminish significantly and that could mean that the supply of organs just might catch up to the reduced demand.

The affect of tobacco products on human organs is devastating.  There is almost no part of our bodies that the thousands of chemicals in tobacco and cigarette smoke can’t invade and ultimately destroy.  If you smoke, it likely will kill you!  If you quit your body will begin to recover and the cancers and other diseases will have to find a different host.

Our governments (city, county, state and federal) all tax tobacco often with the intention of using the revenue to finance stop smoking campaigns and most often some of the money collected is used for that purpose but not always.  As is usually the case when there is a pot of money available, lots of good causes want some of it, sometimes not so good causes get it so less than 3% of tobacco tax dollars go into anti smoking or smoking cessation programs.  Furthermore, settlements in and out of court in the 1990s mean that the tobacco industry is paying states nearly $250 billion over 25 years. Under the agreement, those payments to states will continue flowing even beyond 25 years as long as the tobacco industry is healthy. But the payments would phase out as cigarette company profits decline and would ultimately disappear if people stop smoking.  So while government must try to get people to quit smoking, they really don’t want to try too hard.

So, having given you some critical information about smoking  I’m hoping you will do two things,  1) if you smoke…quit.  2) tell your elected officials to get really serious about helping people who use tobacco products to quit using them, I submit this post for your consideration and comment.

There’s an adage that goes, ”If you borrow a hundred dollars from the bank, you owe the bank.  If you borrow a million you own the bank.”  That simply means the bank can’t be too hard on you if they want to get their money back.  That’s the situation governments find themselves in with tobacco.  In a strange twist, tobacco companies own the government.  Let me explain.

Tobacco Kills.  Cigarettes alone kill nearly a half million Americans every year.  That’s just a cold hard fact.  You probably don’t need reminding but I will anyway via the enters for Disease Control in Atlanta, Georgia.  They list these facts: http://tinyurl.com/lblldw

• The adverse health effects from cigarette smoking account for an estimated 443,000 deaths, or nearly one of every five deaths, each year in the United States.
• More deaths are caused each year by tobacco use than by all deaths from human immunodeficiency virus (HIV), illegal drug use, alcohol use, motor vehicle injuries, suicides, and murders combined.
• Smoking causes an estimated 90% of all lung cancer deaths in men and 80% of all lung cancer deaths in women.
• An estimated 90% of all deaths from chronic obstructive lung disease are caused by smoking.

Smoking and Increased Health Risks

Compared with nonsmokers, smoking is estimated to increase the risk of—

• coronary heart disease by 2 to 4 times,
• stroke by 2 to 4 times,
• men developing lung cancer by 23 times,
• women developing lung cancer by 13 times, and
• dying from chronic obstructive lung diseases (such as chronic bronchitis and emphysema) by 12 to 13 times.

If trends continue, one billion people will die from tobacco use and exposure during the 21st century – one person every six seconds. Globally, tobacco-related deaths have nearly tripled in the past decade, and tobacco is responsible for more than 15% of all male deaths and 7% of female deaths. Tobacco is also a risk factor for the four leading noncommunicable diseases (NCDs) – cancer, heart disease, diabetes and chronic respiratory diseases – which account for more than 63% of global deaths according to the World Health Organization.

Tobacco use is the number one killer in China, causing 1.2 million deaths annually; this is expected to rise to 3.5 million deaths annually by the year 2030. Tobacco is also responsible for the greatest proportion of male deaths in Turkey (38%) and Kazakhstan (35%), and the greatest proportion of female deaths in the Maldives (25%) and the United States (23%).

Uniquely among cancer-causing agents, however, tobacco is a man-made problem that is completely preventable through proven public policies. Effective measures include tobacco taxes, advertising bans, smoke-free public places, mass media campaigns and effective health warnings. These cost-effective policies are among those included in the World Health Organization’s Framework Convention on Tobacco Control (WHO FCTC), a global treaty endorsed by more than 174 countries, and recommended by the World Health Organization in its MPOWER policy package.  http://tinyurl.com/bor7897

Our government knows all of this.  All of our elected officials know this and they all publicly support anti-smoking efforts.  They go to great extremes to condemn the use of tobacco while explaining the public health consequences.   Almost no one is pro smoking and yet everyone is pro smoking because we have come to depend on the billions of tax dollars generated by the sale of tobacco products.  It should be pointed out that at least the U.S,. Government no longer subsidizes tobacco farmers.  That program ended several years ago.

As usual the poor are hit the hardest by the addictive nature of tobacco.  In a study conducted on behalf of the New York State Department of Health, it revealed that low-income smokers (those in households making under $30,000), spent an average of 23.6% of their annual household income on cigarettes, compared to 2.2% for smokers in households making over $60,000.

Taxes on tobacco products total billions of dollars a year.  An example — in New York state the federal tax on a package of 20 cigarettes is $1.01, the state tax is $4.35. New York City adds a local tax of $1.50 to the state levy. That brings the combined tax rate on a package of 20 cigarettes in New York City to $6.36.  Tobacco manufacturers add their profit on top of that so depending on where you buy your cigarettes in the city you could pay as much as $12 a pack…twelve dollars for a pack of cigarettes.  By comparison, when I started smoking in 1954 you could buy a pack of “Wings” cigarettes for Ten cents. Major brands like Lucky Strikes or Camels were a quarter (quit smoking in 1991).

Tobacco Industry Profits Greater Than Ever
According to The Tobacco Atlas, estimates of revenues from the global tobacco industry likely approach a half trillion U.S. dollars annually. In 2010, the combined profits of the six leading tobacco companies was U.S. $35.1 billion, equal to the combined profits of Coca-Cola, Microsoft, and McDonald’s in the same year. If Big Tobacco were a country, it would have a gross domestic product (GDP) of countries like Poland, Saudi Arabia, Sweden and Venezuela.

In the meantime, tobacco companies are fighting laws with every weapon in their arsenal because just as their product kills people, restrictive smoking laws can kill the industry, a killing some say, is necessary and justified homicide.

As countries around the world ramp up their campaigns against smoking with tough restrictions on tobacco advertising, the industry is fighting back by invoking international trade agreements to thwart the most stringent rules.

A key battlefront is Australia, which is trying to repel a legal assault on its groundbreaking law requiring cigarettes to be sold in plain packs without distinctive brand logos or colors. Contesting the law, which takes effect Dec. 1, are the top multinational cigarette makers and three countries — Ukraine, Honduras and Dominican Republic — whose legal fees are being paid by the industry.  http://tinyurl.com/chypao4

Tobacco use has diminished considerably in most of the developed countries but not all of them.  The leafy crop is gaining new popularity among U.S. farmers. Cheaper U.S. tobacco has become competitive as an export, and China, Russia and Mexico, where cigarette sales continue to grow, are eager to buy. Since 2005, U.S. tobacco acreage has risen 20 percent. Fields are now filled with it in places like southern Illinois, which hasn’t grown any substantial amounts since the end of World War I.  http://www.freerepublic.com/focus/f-news/1899911/posts

While the price of cigarettes has continuously increased since 1965, the percentage of that price going towards taxes is now half of what it was then. ^]While tobacco companies complain about the $1.01 cigarette tax, Phillip Morris, Reynolds American, and Lorillard have all increased their prices by almost $1.00 per pack on their own. Phillip Morris currently lists all taxes, including federal, state, local, and sales taxes, as 56.6% of the total cost of a pack of cigarettes.

One of the reasons for the support of increased cigarette taxes among public health officials is that many studies show that this leads to a decrease in smoking rates. The relationship between smoking rates and cigarette taxes is in fact very elastic; the greater the amount of the tax increase, the greater the proportion of smokers who stop smoking. This is especially prevalent amongst teenagers. For every ten percent increase in the price of a pack of cigarettes, youth smoking rates overall drop about seven percent. This rate is also true amongst minorities and low income population smokers.  The rates of calls to quitting hot-lines are directly related to cigarette tax hikes. When Wisconsin raised its state cigarette tax to $1.00 per pack, the hot-line received a record of 20,000 calls in a two month time period versus its typical 9,000 calls annually.

According to the New York Times taxes are not the only government revenue from cigarettes. Settlements in the late 1990s to end state lawsuits against tobacco companies mean that the cigarette industry is paying states nearly $250 billion over 25 years. Under the agreement, those payments to states will continue flowing even beyond 25 years as long as the tobacco industry is healthy. But the payments would phase out as cigarette company profits decline and would ultimately disappear if people stop smoking.

So the government has become a financial stakeholder in smoking, some would argue, even as public health officials warn people about its deadly consequences. Smoking declines as cigarette taxes increase, but a core group of smokers hang on to the habit.  http://www.nytimes.com/2008/08/31/weekinreview/31saul.html

Will the government or governments ever really crack down on smoking?  Doubtful, there is too much money in it for them so the tobacco companies and the politicians who seek to eradicate them have come to be bedfellows.  What many politicians fail to see is the savings that could be had if people didn’t smoke.  According to the CDC again, “Smoking is also a major contributor to many chronic diseases that are driving up the nation’s health care costs. Each year, diseases caused by cigarette smoking result in $96 billion in health care costs, much of which is paid by taxpayers through publicly-funded health programs.” http://www.cdc.gov/features/TobaccoControlData/ but the savings go beyond that when you consider the costs to employers and employees in higher premiums and lost work time due to tobacco caused illnesses.

If we truly wanted to wipe out smoking, taxes could be raised even higher than they are and the dollars generated could go a long way toward helping to solve our budget problems.  Unfortunately if everyone quit smoking, the tax revenue would disappear, too and therein lies the dilemma, but it does prove that you can be both for and against something at the same time.

This List Could SaveYour Life

The 2012 Frankenstorm that started out as hurricane Sandy had a devastating effect on the eastern seaboard of the United States.   In situations like that it is critically important for the sick, elderly and those who are recovering from organ/tissue transplants and other procedures to be specially prepared to provide accurate medical information to emergency responders.

Being prepared for Frankenstorms is essential but mini storms pop up every day.  You never know when for no apparent reason your blood pressure increases dramatically,  you have difficulty breathing, you experience unexplainable weight gain or an angina attack sends you to the emergency room.  When that happens someone is going to ask what meds you are on, how often you take them, their dosage, contact information for your medical team and insurance info.  Under pressure and when sick it is not uncommon to forget important information.  That’s why I developed this list.   If you have already done what I recommend then review and update your effort.  If you haven’t, do it now while you have the time.

Developing the following information could save your life. There is nothing that can help emergency responders or medical professionals more than providing them with the information suggested below. It is critically important to your life that you take the time right now to do the following:

Information to include on an emergency medical information fact sheet: (sample at the end of this blog)

• Your full name, address and phone number
• Next of kin or person(s) who should be notified in case of your emergency including contact information (names, phone, address, email, cell phone)
• Your Primary care physician name and phone number

• Specialty care physicians names and numbers
• The pharmacies you use (include phone numbers)
• Health insurance company, agent and policy numbers (If on Medicare or Medicaid include that notation with account numbers).
• Prescription insurance numbers
• List all the medical conditions for which you are being treated
• List all surgeries
• Blood type
• Write down every medication you take whether by prescription or over the counter.  Include milligrams for each, how often you take them and for which medical condition.

DO NOT GO ANYWHERE WITHOUT AT LEAST A WEEK’S SUPPLY OF YOUR MEDS!   This is especially important during a disaster situation in which transportation, emergency and other services are strained, temporarily unavailable or even suspended.

Some people, transplant patients and recipients in particular must take certain medications to stay alive.  In situations like storms or other natural or unnatural disasters and emergency situations you could be faced with a situation in which you are unable to go home to retrieve your medications and other important belongings.  I suggest you do what I do and that is to keep a shoulder bag packed with your meds and other medical equipment that is within your reach at a moment’s notice. If possible you should also try to stash some cash in your emergency bag.  You might find yourself in a situation where checks and credit cards are useless.

If you have a cell phone and an extra charger, put it in your meds bag.  If you don’t have an extra charger keep the one you have in your meds bag when you are not using it. There is nothing worse than being unable to get to your charger when your phone is going dead.  That phone could be your link to safety and treatment.

If you wear a medical necklace or bracelet, make sure it is up to date and accurate.  If you don’t wear one and have time, get one.

When you have completed the medical emergency list (it should all fit on one sheet of copy paper) make two or three copies, fold them carefully and put them in your purse or wallet.  Emergency medical people can be of the most help if they are aware of your medical history, current medications and other treatments you may be getting.  Having that list in your possession and providing it to medical experts could save your life.  While you may know all of this information, do not depend on your memory.  One omission could prove to be catastrophic.  You must also remember to update the list every time you get a new medication, quit using one, or have any change in your medical condition.

A separate list should be developed for your personal use.  It should include phone numbers of emergency services you might need and iportant family and friend contacts you might need (include cell phone numbers and email addresses).

Sample Medical Info Sheet to Carry With You

HEART TRANSPLANT RECIPIENT

Best Hospital USA  August 21 2007  Immunosuppressed

John Doe

Birth date 2-17-1950

9180 orchard lane Anycity, USA

Home 555-555-5555  Cell phone 555-555-5555

SS # 555-55-5555

Spouse; Jane Doe; Cell phone 555-555-5555

Physicians:

Primary, Dr.Sawbones Anycity USA.  Address, phone numbers

Transplant Pulmonologist,  Dr. Breatheasy best clinic USA. 
Address, phone numbers

Transplant Cardiologists, Dr. Heartthump best clinic USA. 
Address, phone numbers

Transplant Coordinator:  Nurse Jane best clinic USA/
Address, phone numbers

 Pharmacy: 

Primary:  Best Pharmacy USS. 
Address, phone numbers

Secondary: Second best pharmacy USA. 
Address, phone numbers

 Health insurance:

Primary — Medicare part A, Hospital, part B, Medical. Policy number other info

Secondary, AARP Medicare Supplement .   policy number other info

Medicare part D Prescriptions, AARP Medicare RxEnhanced policy number, other info

 

ALLERGIES:  Penicillin, cats, all seafood/fish, mold, dust.  

 BLOOD TYPE: B Positive

MEDICATIONS

 Heart related medications

• Anti-rejection Cyclosporine 200 mg  twice a day
• Anti-rejection — Cellcept  1000 mg twice a day
• Anti-cholesterol — Prevastatin 20 mg once a day
• Blood Thinner – Aspirin 81 mg once a day
• Blood Pressure – Amlodipine Besylate 5 mg twice a day

Other medications

• Reflux – Omeprozole  (Prilosec) two 40 mg twice a day
• Thyroid — Levothyroxine .088 MG once a day  (upon arising)
• Asthma – ProAir albuterol  rescue inhaler as needed
• COPD – Foradilinhale one capsule twice a day
• COPD – Spiriva inhale one capsule once a day (upon arising)
• Depression-Remeron  7.5 –mg once a day-

 Supplements

—  Calcium – 600 mg tablet with Vitamin D twice a day

—  Multi-vitamin– one tablet once a day

Medical Conditions

• Asthma, hay fever, allergies diagnosed 1951
• Non-smoker
• COPD diagnosed October 2000
• Restless leg syndrome diagnosed 1996
• Chronic lower back pain

Surgeries

• Heart transplantBest Hospital 
• Anywhere USA August 2007
• Cholecystectomy 1994
• Total left knee replacement 1998

This list is on my computer and on my cell phone.  Also, I carry two paper copies in my wallet at all times and update it whenever there is a condition, prescription, insurance or medical team change.  Every time I hand this list to ER personnel, or anyone else who asks for it they all say the same thing, “Everyone should carry a list like this it is of invaluable help to us and could save your life.”

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 3,000 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Are Profits More Important Than Cures?

By Bob Aronson

A Treatment for Almost Everything but Few Vaccines & Even Fewer Cures — Why?

Fair and balanced journalism is a very nice catch phrase but the stated goal is more than illusive, it is almost non-existent and that’s because there are never just two sides to a story.  There are often several sides so no matter how hard a reporter might try to be objective, there is no way you can cover every angle.  I do not pretend that this post is the endeavor of an investigative journalist, nor do I contend that this is an objective report.  What I offer here represents some observations and a few links to help illuminate the information.  I hope you find it useful.

According to the U.S. Census Bureau, the average life expectancy at the beginning of the 20th century was just over 47 years. A century later, that number had increased to nearly 78 years, due largely to the development of vaccinations and other treatments for deadly diseases.  We are living longer because medical science has provided us with treatments, medications, devices and surgeries that cure little but keep most threatening diseases at bay…and often at a phenomenal cost.

As a communications consultant specializing in healthcare I have worked with several pharmaceutical companies.  I know many researchers and I am aware of the dedication they bring to their jobs and to providing help to patients.  I know, too, how expensive it is to develop new drugs and all too often I have seen those efforts fail resulting in the loss of millions of hard-earned investor dollars.  In short, I have at least a passing acquaintance with the pharmaceutical industry and the financial risks they take to bring new drugs, treatments, procedures and devices to the marketplace.

At the same time I also understand the desire and the necessity to be profitable.  Without profitability no business can survive.  It is only fair to point out that the pharmaceutical industry (Big Pharma) has been incredibly profitable, despite the investments and even the losses.

Here is the list of the five biggest pharmaceutical companies based on 2010 revenues, in billions of dollars.

1.Pfizer                                                        $58,523,

UNOS CEO: Study Could Redefine “Medically Suitable” Donors

On August 11, I sent a letter to Walter Graham, CEO of the United Network for Organ Sharing (UNOS) asking what UNOS was doing or was going to do to increase the supply of organs. My letter noted that the number of transplants performed each year has plateaued at about 28,000 while the number of people on the list continues to grow.  Today there are 114,899 people waiting and so far this year there have been 11,469 transplants from 5,677 donors.   As you can see, the gap continues to widen.  With only four months left this year we may fall far short of the 28,000 number.

Below you will first find my letter to Mr. Graham, followed by his response.  You can decide if he responded to my concerns and most importantly, your concerns about how our national donation/transplantation system is managed.

August 11,2012

Walter Graham

Chief Executive Officer

United Network For Organ Sharing

Richmond, Virginia

Dear Mr. Graham:

You might remember me as a Minneapolis, Minnesota based communications consultant that worked with UNOS in the 90’s.  During that period I was diagnosed with dilated cardiomyopathy and subsequently had a heart transplant at the Mayo clinic in Jacksonville, Florida in August of 2007.

I am writing not as a former consultant but rather as a very grateful heart transplant recipient, founder of Facebook’s nearly 2500 member Organ Transplant Initiative (OTI), author of over 120 blogs on donation/transplantation issues (www.bobsnewheart.wordpress.com)  where we have 100,000 readers and writer/producer of three videos on organ donation. I am a very active advocate for organ donation and have been for many years.

I’ll get right to the point.  I have a growing concern about the Inability of the altruistic system to meet the demands for organ transplants and UNOS’ reluctance to make or even recommend significant changes to the system.

I am quite aware of all the ethical and other arguments forwarded by UNOS for rejecting changes that would include presumed consent and donor incentives/compensation among others.  I am puzzled as to how UNOS can find these suggestions unethical or unworkable but has made no statement about the ethics of allowing people to die due to the failure of the altruistic system to generate enough transplantable organs.  How can it be ethical to allow an inadequate system to prevail?

Having been on that list I have first-hand experience with the depression that accompanies it, knowing that the government contractor that is funded with my tax dollars is doing little beyond promoting altruism to significantly increase the number of available organs.  It is discouraging and depressing for those on the list to continually hear that every option other than altruism is either unethical or unworkable.

I am hoping that you can offer some hope that I can pass on to members and other interested parties that the gap not only is closing but will close and soon.  Please offer some explanation other than renewed efforts at increasing altruism of just what UNOS is doing and will do to help those who are languishing on an ever growing list of people who need transplants.  Please prove me wrong.  I would be most grateful to see clear, compelling evidence that the altruistic system can work and is working.

It is almost 30 years since the National Organ Transplant Act (NOTA) was implemented..  I think that is plenty of time to determine if a system works.  Unless you can prove otherwise, It seems clear that with 114,000 people listed and only about 28,000 transplants done every year despite intense and noble efforts at increasing donation rates, altruism alone cannot meet the demand – ever.  .

Please respond as soon as possible.  I plan to publish my letter to you and your response side by side.

Thank you for your consideration and time

Bob Aronson

Return letter from Walter Graham

Received on August 22, 2012

Dear Bob:

Thank you for your letter, and yes, we remember your valuable contributions to us as a consultant in the 1990s.  We are glad you continue to do well with your transplant and engage the public in this vital cause.

Your concern regarding the shortage between available donors and the needs of waiting candidates is widely shared.  Our ultimate goal and fondest hope is to be able to provide transplants for all candidates in need, to prevent deaths and needless suffering while waiting.

As you may recall from your work with us, the primary mandate of UNOS as operator of the national Organ Procurement and Transplantation Network (OPTN) is to allocate organs from deceased donors equitably among transplant candidates.  Other significant roles, as specified in federal law and regulation, including maintaining a clinical database on all donors, candidates and recipients; monitoring compliance with OPTN policies; and investigating donation- or transplant-related issues that may pose a risk to the health and safety of transplant patients, living donors or the public.

Promoting organ donation is interwoven among all of our responsibilities, and transplantation depends entirely on the public’s willingness to donate.  That said, managing the organ donation system is not a fundamental mandate that federal law or regulation has assigned to us.  Our essential responsibility is to make sure that available organs are used in the most responsible and effective way possible.

State and federal law governs the process of donation in the United States.  Any change to the current voluntary nature of donation, whether that would involve preferred consent, financial incentives, preferred status or other means, would involve a public initiative to amend the law.  UNOS, as a corporation, has declared its support of careful study of potential incentives, financial or non-financial, that would encourage donation while respecting individuals’ freedom of choice.  Such study may involve legislative efforts to suspend the law to allow examination of the results.  As a federal contractor for the OPTN, UNOS cannot develop policies not supported by the law or expend limited resources lobbying for legislative changes beyond the OPTN’s mandate.

One of the fundamental questions UNOS is seeking to answer has to do with the potential number of persons who could qualify for deceased organ recovery.  Our Center for Transplant System Excellence is conducting a Deceased Donor Potential Study. This study will identify the total number of medical cases in which persons could be deceased organ donors regardless of issues of consent. The results of this study will provide a better understanding of what is possible. The merits of whether a system based on altruism is the best approach could then be understood in the context of what is possible. It may well be that the number of medically suitable cases as currently defined is not adequate in any circumstance.

Many people are convinced that the delicate nature of donation may be adversely affected by negative connotations or perceptions generated by controversy over debates about changes to the underlying legal system such as presumed consent. That being the case, it is prudent to pursue the DDP Study to learn what the potential might be before considering whether to advocate for a fundamental change.

Among key strategic goals for the OPTN are increasing the number of transplants performed and optimizing post-transplant survival.  Even with the current supply of donated organs, we can increase utilization of organs and enhance survival by better matching available organs with candidates who are the best long-term match.  In promoting organ donation, we actively support efforts such as those of Donate Life America, which has recently announced more than 100 million Americans have formally registered their wish to donate organs and tissues and has set an ambitious goal of 20 million new donor commitments this year.

We all agree a higher rate of donation is essential to save lives and relieve suffering of men, women and children anxiously awaiting an organ transplant.  UNOS and the OPTN are dedicated to helping save and enhance lives through organ allocation.  Whether society may be ready to adopt a new model for the process of organ donation is an important discussion that would involve society as a whole and active support of state and national lawmakers.

Walter Graham

CEO

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show, it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Death by Journalism

On behalf of the over 1600 members of Facebook’s Organ Transplant Initiative and my Blog, Bob’s Newheart on WordPress, I am lodging a very strong objection to Dick Terisi’s inaccurate and life-endangering  column in the Wall Street Journal,  “What You Lose When You Sign that Donor Card.”  Not only should Mr. Terisi retract his irresponsible words he should also issue an immediate public apology to everyone on the national transplant list and their families.

Recently a hack journalist, Dick Terisi, published a column in the Wall Street Journal suggesting that American physicians were killing patients in order to extract their organs for transplant.  This irresponsible attack on a system that has saved thousands of lives and will save thousands more is worse than bad journalism it can only be termed what it is – death  by journalism, because there will be people who will refuse to become organ donors as a result.

I am a heart transplant recipient who knows the desperation felt by being on “the list.”  I can only imagine the emotional trauma Mr.Terisi caused with his reckless disregard for truth and lack of compassion for the dying and the loved ones who care for them.  He has also insulted the professional and personal integrity of every medical professional in the nation, but I’ll not take up their defense.  I’m sure they will rise to the occasion.

There are over 113,000 people on the aforementioned list but fewer than 30,000 transplants are done each year in the United States because of the shortage of organs.  That means that thousands die while waiting.  Mr. Terisi’s inaccurate portrayal of the donation system is based on “junk” science, anecdotal information and an “off the cuff” remark by a single physician.  It ensures that even more people will die because some readers will believe his distortions and either not become organ and tissue donors or change their existing designation to non-donor.

I know that others in the transplant community are preparing point by point responses to Terisi’s ravings so I’ll just touch on one – brain death. He told a simple lie so here’s the simple truth.

According to the American Academy of Neurology, brain death is defined as the irreversible loss of function of the brain, including the brain stem. The most common causes of brain death in adults are traumatic brain injury and subarachnoid hemorrhage (a form of stroke)   The guidelines for determining brain death were written by a team of experts lead by  Eelco F. Wijdicks, M.D., Ph.D. from the Mayo Clinic in Rochester, Minnesota.  Dr.  Wijdicks is considered the preeminent expert on brain death in the world – and he says, “The brain death diagnosis can be made only after a comprehensive clinical evaluation that often involves more than 25 separate assessments.”  These assessments must be done by highly qualified physicians.

OK…I’ve given you the simple truth now here’s a detailed  explanation as printed in Critical Care Nurse which is a far cry from the simple almost cavalier approach suggested by non-physician, non-medical expert, non-donor and self proclaimed, “heartless, selfish bastard” Dick Terisi.  http://ccn.aacnjournals.org/content/24/5/50.full

“Current standards for making a diagnosis of brain death require (1) identification of the suspected cause of the coma, (2) determination that the coma is irreversible, (3) performance of a clinical examination, and (4) interpretation of appropriate neurodiagnostic and laboratory tests.¹ Identification of the cause of coma is based on the patient’s history and the results of neurodiagnostic tests such as computed tomographic scans. Common causes of brain death detected on computed tomographic scans include brain masses with or without herniation and edema.¹ In determining the cause of the coma, conditions that could confound the clinical assessment must also be ruled out, such as hypothermia, hypotension, severe acid-base abnormalities, drug or alcohol intoxication, sedation, and neuromuscular blockade.

The next step in diagnosing brain death is performing a directed, clinical examination. According to the American Academy of Neurology,² each criterion of the clinical examination should be satisfied on 2 separate occasions. The length of time between examinations has not been defined and varies depending on the cause of the coma. The American Academy of Neurology² has suggested that a 6-hour interval between examinations is reasonable; others¹ have recommended a period of up to 48 hours in instances in which unknown toxins may be responsible for the coma. In addition, 2 conditions must be met before the clinical examination is conducted: the patient’s blood pressure should be greater than 90 mm Hg, and the patient’s body temperature should be greater than 32°C (90°F).

The clinical examination includes an evaluation of overall responsiveness, brain-stem reflexes, and apnea testing. The patient should be deeply comatose, with no response to painful or verbal stimuli, including decorticate or decerebrate posturing. He or she should also have no spontaneous movement, including shivering, seizures, or respiratory movement. The single exception is movement resulting from spinal reflexes. The assessment of responsiveness and movement requires that the effects of all neuromuscular blocking agents and sedatives have worn off completely.”

Mr. Terisi’s column is bad enough but the Wall Street Journal cannot be absolved of blame.  Terisi would have had a far smaller audience and a minimized effect had the Wall Street Journal used sound journalistic judgment and trashed this extremely shoddy piece of journalism.  WSJ ought to join Terisi in the public apology I called for earlier but I expect neither to do so because that takes “class” and integrity — commodities which neither seem to possess.

Lodge your protest at Wall Street Journal Contact:
Online: onlinejournal@wsj.com
1-800-JOURNAL (1-800-568-7625)
Outside the U.S.:1-609-514-0870
Monday – Friday: 7am to 10pm ET
Saturday: 8am to 3pm ET

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.
Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.
Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Bob Aronson

Heart Transplant recipient

Jacksonville, Florida