Category Archives: Bobservations

Chiropractic Manipulation — What is it and Does It Work?


By Bob Aronson

aching back cartoon

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 whaironing boardt 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.

logoDoctors 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 Preston long book coverChiropractic 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/

web md logoThe 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 accupunctureconventional 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

massage therapyIn 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 breathingTai chi. 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 AronsonBob 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.

Advertisements

THE PRICE WE PAY FOR THE HIGH COST OF ANTI-REJECTION DRUGS


dialysis scam cartoonIntroduction by Bob Aronson

Blog by James Myers

 James Myers lives in Indiana and is a member of Facebook’s Organ Transplant Initiative (OTI).  He suffers from End Stage Renal Disease (ESRD) or Kidney failure.  Jim is on dialysis and has been active locally and nationally in the effort to end the 36 month limit on Medicare coverage of anti-rejection drugs.  He is one of the 100,000 kidney patients on the national transplant wjames myersaiting list. Jim is a frequent thoughtful and valuable contributor to the discussions on OTI and we thank him profusely for writing the following blog. 

 

 

ARE DIALYSIS PATIENTS NOT SEEKING KIDNEY TRANSPLANTS BECAUSE ANTI-REJECTION DRUGS COST TOO MUCH?

 By James Myers

I guess the best place to start a blog about kidney disease is to explain what the kidneys do.  This graphic pretty much explains it.What do kidney's do graphic

Everyone is born with two kidneys, but we can survive with one if necessary.  Sometimes called “The Silent Epidemic” Kidney disease affects millions and threatens even more.   600,000 American citizens suffer from ESRD (End Stage Renal Disease) and kidney failure which leaves you with 3 choices: (1) dialysis; (2) a kidney transplant or (3) death. Kidney transplant recipients must take immunosuppressive drugs for the life of their transplant, or they risk losing their new organ. Medicare pays for the transplant and immunosuppressive drugs for 36

medicare logo 2months post-transplant unless beneficiary is Medicare-aged (65) or Medicare-disabled.   The Medicare (ESRD) program pays for dialysis or transplantation for over 600,000 kidney disease patients every year, regardless of age, and has saved millions of lives in the four decades since its enactment. After a transplant, recipients must take immunosuppressive drugs every day for the  rest of his or her life.   Failure to do so significantly increases the risk of organ rejection and therefore, death.   If you are covered by Medicare due to either age or disability and have a transplant your anti-rejection drugs are covered for life.kidney transplant  If you are not covered due to age or disability Medicare will still pay for your kidney transplant, but will only cover anti-rejection drugs for 36 months, then you are on your own.  this policy makes absolutely no sense because, ironically, Medicare will pay for a lifetime of dialysis which costs more and even more ironically, if you go into rejection because you can’t afford to buy the drugs that prevent it, Medicare will pay for another transplant and/or dialysis at costs that are many times that of the annual expense of immunosuppressant drugs.  This political slight of hand act not only wastes U.S. taxpayer dollars, it can actually cause death.

Here are some startling facts that make you wonder woman wired for carewhy congress refuses to make a common sense change.   When Medicare coverage ends after 36 months many transplant recipients have difficulty finding other coverage for their immunosuppressive drugs. Medicare spends around $90.000 per year for an individual who is on dialysis and $125,000 during the first year of a kidney transplant. However, after that first year the transplant patient’s drug costs plummet to $25,000 or a little over $2,000 a month.  Not many people have an easy time paying that bill but for the federal government it would be a cost saving measure to cover the drugs rather than pay for a new transplant or more dialysis.  Furthermore, extending mmunosuppressive  coverage beyond the 36-month post-transplant limit would improve outcomes and enable more kidney patients who lack adequate insurance to consider transplantation. Most transplant recipients also have a higher quality of life, and are more likely to return to work than dialysis patients, and if they return to work they again become taxpayers.

Currently, there is a bill pending in the U.S. senate (S. 323), “The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act,” would extend Medicare Part B coverage for kidney transplant recipients for the purpose of immunosuppressive drugs only. All other Medicare coverage would end 3U.s. senate6 months after the transplant. Beneficiaries would be responsible for the appropriate portion of the Part B premium, as well as applicable deductible and coinsurance requirements. For patients who have another form of health insurance, Medicare would be the secondary payer. The bill also requires that group health plans currently providing coverage of immunosuppressive drugs for kidney transplant recipients maintain this coverage.

There is a corresponding bill in the U.S. House of Representatives (H.R. 1428): Comprehensive Immunosuppressive Drug Coverage for Kidney pay for the good news cartoonTransplant Patients Act.   The Senate version of the bill has been passed out of committee.

Last week, I read a blog I found to be disturbing. Coupled with that, I received a note from one of my friends. The note and the blog indicated that people who were unable to age/disability qualify for Medicare were refusing transplants due to the high costs of the anti-rejection medications. According to Cameron Field and Kidney Buzz, of the 275,000 people who are on dialysis in the United States, only 93,000 chose to be listed on the US Kidney Transplant Waiting List. Two thirds of dialysis patients are not listed, while only one third had chosen to list.

Does the prospect of Medicare coverage for only 36 months and then the average monthly cost of approximately $2100/ month cause people to decline the transplant option? Of course, there may be others reasons to decline; it requires a surgery, the risk of infection, the risk of rejection even if you take the meds, the necessary follow up, and pain, but sources are now saying that it may be possible that up to 34% of dialysis patients are declining transplants due to the cost of anti-rejection meds.  They know they will die without the transplant but they have no choice.

The Dialysis Patient Citizens conducted a survey last year on this issue. 29% said they had other medical conditions. 26% said they were too old. 7% said they were overweight. 6% said their doctors didn’t recommend it. 5% said they were satisfied with dialysis. However, 6% cited financial reasons generally, 4% said they couldn’t afford the surgery, and 2.5% said they couldn’t afford the medications. 17% cited personal reasons. Who knows how many in that 17% didn’t want to disclose financial hardship. So according to the DPC’s data, between 13% and 30% aren’t on the list due to financial reasons.   Of the 13,000 transplants performed last year, 6,000 were from living donors, but there are some barriers to living donation that must be overcome, as well.

Nearly everyone knows that while we are born with two kidney’s we can live with just one, so many people choose to donate the second kidney tliving organ donorso a dying patient,.  While the recipients insurance pays the medical costs the donor is often left footing the bill for lost wages while hospitalized and travel to and from the transplant center.   Some states,but not all will provide reimbursement in the form of tax deductions, but nice as they are, they don’t put cash in the pocket of the donor.  The feds have a few grants available but they are grossly underfunded and so many have to foot the bill themselves.  That knowledge may prevent many from offering to be donors. The DPC estimates that cost to reimburse lost wages is about $6,000 for one surgery. When you look at in in terms of Medicare paying for the transplant surgery ($100,000) and for the cost of anti-rejection drugs ($24,000 a year), travel and lost wages for the donor would be a minimal expense and if available would likely increase the number of living donors.

So where do we stand?  If 30% of the people taking dialysis refuse to be listed due to the costs of transplant autoimmune medications, then we are talking about approximately 100,000 people who cannot afford a life-saving transplant.

Everyone on dialysis knows that life expectancy while on that machine is, on average, from 3-5 years. Life expectancy for a transplant, from a living donor is on average, 12 to 20 years, while a deceased donor kidney is somewhat less, 8 to 12 years. If you receive a kidney transplant before you are required to begin dialysis then you will live 10 to 15 years longer than if you stayed on dialysis.  So, even though a kidney transplant involves major surgery and requires some risk, in comparison it offers you a longer life.   Most patients who have been on dialysis before their transplant see an amazing difference in their quality of life.

There are two closely related issues here that can be resolved.by one simple action.  The Congress must pass and the President must sign the bill that would provide lifetime coverage of anti-rejection drugs.  It is the only logical, financially responsible and humane solution to a problem that has already caused untold misery and death.

If you find the current law absurd and a waste of money and want to see it changed to save lives and taxpayer dollars then you can help by writing to your congressional representative or U.S. Senator ttake actionoday.  The sample letter below can be used as a guide, but we encourage you to use your own words.

Sample language

Dear ­­­­­____; I am contacting you to request that you cosponsor important legislation for chronic kidney disease patients (for the house, refer to file H.R. 1428.  For the senate refer to file S 323), the “Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act to help kidney transplant recipients obtain the life-saving immunosuppressive medications that are necessary to maintain the viability of their new kidney.

Individuals with chronic kidney failure require kidney dialysis or a transplant to survive, and are eligible for Medicare regardless of age or other disability. There is no time limit on Medicare coverage for dialysis patients. However, transplant recipients who are not aged or disabled retain Medicare eligibility only for 36 months following their transplant. After their Medicare ends, they often face the challenge of obtaining group health insurance or other coverage, greatly increasing the risk of organ rejection if they cannot afford their required medications. If the transplanted kidney fails, they return to dialysis or receive another transplant, both of which are more costly (Medicare spends about $90,000 annually on a dialysis patient and about $25,000 per year for a kidney transplant recipient, after the year of the transplant).

The current bill would extend Medicare Part B eligibility, and only for immunosuppressive medications. Coverage for any other health needs would end 36 months after the transplant, as under current law. The legislation also requires group health plans to maintain coverage of immunosuppressive drugs if they presently include such a benefit in their coverage. Lifetime immunosuppressive coverage will improve long term transplant outcomes, enable more kidney patients who lack adequate insurance to consider transplantation, and reduce the number of kidney patients who require another transplant. Nobody should lose a transplant because they are not able to pay for the drugs to maintain it.

On behalf of thousands of transplant patients, I respectfully request your support of this legislation. Sincerely,

Your name

 

In order to help you write to your representative in congress Bob’s Newheart has provided the following resource.  You can find your elected representatives and others here http://www.usa.gov/Contact/Elected.shtml or you can use the following links as well

To find your U.S. Senator’s address click on this link http://www.senate.gov/general/contact_information/senators_cfm.cfm

To find your congressional representative click on this link. http://www.house.gov/representatives/find/

 

bob minus Jay full shotBob 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.

The Incredible Healing Power of Pets


By Bob Aronson

Cat cartoon

There’s something about petting a dog or having a cat nestle in your lap that brings one a certain serenity or at least a warm feeling. It’s been shown medically that the company of a pet can bring blood pressure down, lessen depression, calm frayed nerves and even help to settle an upset stomach.

Is there anything cuter than a puppy or kitten? Even at their destructive worst they are cute. When we got Reilly, our Soft Coated Wheaten Terrier as a puppy she loved to shred paper and those razor sharp puppy teeth can do that in a split second.

.
Reilly and the toilet paperLook at this mess. She had gotten a hold of some toilet paper and made a mess of our living room, there were shreds of paper everywhere. And…when we found her amidst that pile of blowing and drifting tissue, she looked up and wagged her tail, proud of her accomplishment and willing to destroy even more if it would please us. Look at this picture, how could you possibly do anything but laugh upon seeing this mess.

.
Besides the laughs, the warm fuzzy feelings and the love what can pets do for you?  According to the Centers for Disease Control and Prevention, the company of a pet can help people who are living with depression. Why is that? I think it’s because they ask for very little and Reilly and Ziggy sleeping in basket togethergive unlimited affection and companionship. Maybe it’s because cats, dogs and other companion creatures offer unlimited affection and nonjudgmental companionship. They lift our spirits and lower our stress. They counteract symptoms such as isolation, rumination and lethargy.  Even just looking at our two dogs Reilly and Ziggy (mini schnauzer)  and how much they like each other gives one a warm all over feeling.

 

People who study human behavior tell us that caring for animals is an ego boost, a shot in the self-esteem department that gives people a sense of purpose, of being needed and necessary. Knowing that another living being depends on us for sustenance and protection gives our self-worth a good shot in the arm.

 

According to a 2009 study published in the American Journal of Orthopsychiatry.Jennifer P. Wisdom, PhD, an associate professor of clinical psychology at Columbia University Medical Center and several of her colleagues surveyed 177 nearly 200 patients with varying degrees of mental illness to determine how the recovery process works. The study concluded that besides offering the boost in self-worth, Pets can serve as either substitute or additional family members. Yes, family. If you’ve ever had a pet you know that you consider them family— because they are.

.
For some people the only love in their lives is the love shared between them and cat cuddlingtheir companion animals. Now, I don’t know who invented the term companion animal but it is perfect because they are more than possessions, they are friends, companions, confidants and you could even say, therapists. If you can find a single human being who is a better listener that your dog or cat or bird or whatever I’ll buy you lunch. They never object, they don’t interrupt they just listen very carefully and wag their tails or curl up close to you. Their affection washes over you like a hot shower after a long run and all the troubles of the day run into the drain.

.
Our dogs are happy to see us at least a dozen times a day. If I leave to go the store, I get a reception when I come home that is as though I had been gone for a year. I get the same reception if I go to the mail box and come back in a minute later. Open the door and Ziggy is running in circles with joy and Reilly is licking my hand. They are always glad to see me and you know there is nothing phony about it…they really are glad to see you every time they see you.

.

Here’s a classic video…it’s a must see and it’s short.  A soldier returns from a tour of duty in Afghanistan and the first one to greet him is his dog.  This will bring tears to your eyes.  https://www.youtube.com/watch?v=ysKAVyXi0J4

.
Not only are pets good for your mental health, they can be of immeasurable assistance in maintaining your physical health as well.  Dogs need to be walked and that means you need to walk with them. You may not think of it this way but your dog is helping you It's time for your walkget exercise you might not get otherwise. Every medical study done on the value of exercise says the same thing, even a casual walk is good for you. You don’t have to sprint or run or jog, just walk with Fido and you are getting a health benefit. I haven’t seen any studies on the matter but I’ll bet that dog owners walk more than people who don’t have them. And…I’ve read that people who have pets, or companion animals also have lower blood pressure and decreased cortisol…that’s the stuff that causes stress.

.
Most nursing homes or extended care facilities allow visits from animals. When my mom was in a nursing home we used to bring our terrier/Chihuahua mixed dog Lady with us. Mom loved seeing her and lady, who could be a cranky little dog, loved seeing mom. I think they both loved all the attention they got. Other nursing home residents always stopped and wanted to pet Lady. One little 12 pound dog could make a whole nursing home happy at least for a few minutes.

.
“Okay,” you say, “I’ll buy all the benefits of having a pet but I can’t. I’m not home much, I travel a lot, I just can’t care for one.” Well, you can benefit from animals anyway. Alan Beck who is the Director of the Center for Human-Animal Bonding at Purdue University suggests the following:

Visit a zoo. Farms that open their barns to visitors and even petting zoos can also be an entrée into the animal world.

  • Put up a birdfeeder in your backyard or outside your apartment window. You could also get out to a park to enjoy birds, chipmunks and other critters in their natural setting.
  • Set up a home aquarium. It may take a little work to get the pH levels balanced, but an established fish tank is fairly easy to maintain.
  • Walk a friend’s dog. You could also offer to pet-sit for dogs, cats, fish and so forth when friends and family members go on vacation, but be sure you’re ready to take on the responsibility.
  • Volunteer at an animal shelter. This is a win-win-win. The shelter gets extra hands to groom, play with or clean up after their charges; you get the feel-good effects of being around animals, and the abandoned pets benefit from your attention.

If none of that appeals to you how about a good movie. One that tugs at your heart strings and makes you feel good. Try any one of these.
1. Beethoven

beethoven

 

 

 

 

 

.
This giant but adorable St. Bernard’s real name was Chris.
2. Buddy

buddy

 

 

 

 

.
Buddy — from the “Air Bud” movies — was his real name, and he also played Comet in Full House!
3. Marley

Marley and Me

 

 

.
Marley, of “Marley and Me” was played by 18 different dogs. All really freaking cute.

.

You can find more great “Feel good” dog movies at http://www.buzzfeed.com/lyapalater/30-of-the-greatest-movie-dogs

.

Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – spread the word about the immediate need for more organ donors.  On-line registration can be done at www.donatelife.net  Whenever you can, help people formally register.  There is nothing you can do that is of greater importance.  If you convince one person to be a donor you may save or positively affect over 60 lives.  Some of those lives may be people you know and love.  

You are also invited to join Facebook’s Organ Transplantation Initiative (OTI) a 3,500 member  group dedicated to providing help and information to donors, donor families, transplant patients and families, caregivers and all other interested parties.  Your participation is important if we are to influence decision makers to support efforts to increase organ donation and support organ regeneration, replacement and research efforts. 

 bob half of bob and jay photoBob Aronson is a 2007 heart transplant recipient, the founder and primary author of the blogs on this site and the founder of Facebook’s 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.

Reflections — What I learned in My First 75 years


By Bob Aronson

cartoonIntroduction

I turn 75 on the 17th of February 2014.  That birthday brings with it mixed emotions and a flood of memories.  Most people I know have one or two birthdays in their lifetime that stand out and have a more lasting effect.  I’ve had three; when I turned 21 for obvious reasons; when I turned 50 and now this one, 25 years later.

Age 50 made me feel as though I had climbed the mountain and on the way had accomplished all that I had set out to do in life.  I stood at the summit and saw no new challenges or goals only a life of sameness and boredom.  I had no idea what was ahead but I somehow felt the excitement of life was over and that I was like a rudderless ship in storm tossed waters.  For the first time in my life I was without goals and therefore without ambition.  It was a horrifyingly depressing feeling. Recovery came only after I awakened one morning scolded myself, adjusted my attitude and set new goals.  That is when I realized 50 was just a number — not a sentence or a punishment.

25 years later I look back and realize that when I turned 50 in1989 there was a whole new life ahead of me. It was to be mixed with success, tragedy, love and a new lease on life, but in 1989 50 was only a number. Birthdays are really quite meaningless because their real significance can only be known when viewed from the future.

That means that age 75 has no meaning yet either.  It, too, is just a number.  As I approach it I feel more emotionally and intellectually alive than ever. Physically I am limited by some of the issues that affect a man of my years but for the most part I am able to do what my lifestyle demands.  If there is a change from 25 years ago it is that I reflect more on the past.  When younger I lived life and never looked back. Now I thoughtfully examine my history seeking to find reasons for my choices and what I learned as a result.  I wish I had done that earlier because having an awareness of what you’ve learned can eliminate the repetition of life’s errors.

Most notable about every birthday in the last six years is the fact that I can celebrate it only because a stranger somewhere in South Carolina decided to be an organ donor. I got his heart in 2007 without which I would have expired years ago.

The heart saved my body but my wife Robin saved my life and my sanity.  robinShe took care of me both pre and post-transplant in times where I was near death’s door, depressed and despondent.  My extended illness could not have been easy for her but despite having to move to a new city, run two businesses and take care of me her disposition never changed and her concern for my well-being never flagged.

Robin made life worth living and because of her care and love, attention and encouragement I was restored and alive again.  Her compassion, concern, optimism and good humor are contagious and I know that with her by my side nothing is impossible.  She captured my old heart and also its replacement.  I am the recipient of blessings that far exceed what I deserved.  Her influence gave me the courage and the will to heal and to develop new interests and skills and today I am a newer and I hope better person than I was.

Turning 75 is a watershed moment, a turning point of sorts when one must admit despite powerful internal forces of denial that “elderly” is a more than apt description.  I am older than the “old men” of my youth but younger than many of my friends.  I feel good, I don’t feel old nor do I think that I think old — but my body sends different signals than does my mind resulting in confusing messages being received by the control centers of my brain. “Get up and run” results in “rise slowly and shuffle.”

Early one morning, as the coffee maker gurgled and steamed and some new aches and pains emerged in new places, I put my arthritic fingers on the keyboard and the following is what magically appeared on the screen. I don’t pretend that what I wrote is particularly profound or even new but, it is what I was thinking at 4 AM on one particular day.

When you are young you should enjoy, appreciate and savor every delicious drop of life.  It is so incredibly short.  There should be no room for pessimism only joy, adventure. success and the pleasure derived from helping others.

When You Are Young, When You Are Old

bu Bob Aronson

cocoonWhen you are young your dreams have eons of time to develop and emerge from the warm confines of their incubator cocoons.  And – the dreams never die, they gently morph into something better and more spectacular.

 ·    

     When you are young you are limited only by the infinity of your imagination.  Nothing is impossible, unhealthy or fatal.  When you are young you are immortal, impervious to harm.

      When you are young “time” is but an insignificant word with no power to limit your possibilities.stopped clock

 ·  The tick and tock of life’s relentless clock is muted while the hands lie almost paralyzed and motionless pointing not to hours or minutes or seconds but rather to eternity. When you are young.

 ·    In the early spring of life you own the world with no thought given to losing those you love because time is not a factor and death is not yet part of living.

 ·    When you are young the effects of time are not visited upon our minds or bodies. As with a good wine or cheese,  aging for the young is gentle and enhances the flavor of life.

·       And when you are young you know you will see the future but it is many calendars away and you have confidence that everything will be better. 

·       When you are young the future is distant and is yours and it abounds with opportunity but…

 ·     When you are old it is seconds away – each experience is a future lived while awaiting the next.

flowersWhen you are old the future is now.  Each new day is a realization of yesterday’s future and the measurement of the quality of life is based on being remembered by those you hold dear.

·       When you are old each new day is a victory, each step a record, each breath a miracle, and each new pain is but a pinch to remind you that life still exists within these bones.

        When you are old you wonder if your life had meaning, If you helped not hindered, if you made a positive mark somewhere on someone – if the people who count still care.

·      When you are old you think about old more often than the young think about youth because senior bodies send some not so simple reminders like pain and…

·       Unlike the young who dream of blissful futures and of unbelievable opportunity the elderly think mostly about what has been, who they were and if they made a difference.

·      When you are young you meet challenges with a determination to overcome them, “your way.”  I might have been far more successful had I taken advantage of the knowledge of those who preceded me who had already invented that wheel.

 ·     When you are old you are free from the stress of wondering what will you be question marksand where you will go. You already know.

 ·     When you are old you are filled with gratitude for your many blessings and a joy for life’s victories already accomplished and you can celebrate again and again.

 ·     When you are old you are eager to share knowledge gleaned from profound life experiences but age and lack of title denies us access to settings where our thoughts can be heard and recognition is often given posthumously — I would rather hear it. 

 ·    When you are old your chest swells with pride when you think of your children and grands and great grands and you hope that someday, when they reflect that you are to them what they are to you. 

      When you are old you desperately miss those you love who live in distant places and you try to assuage the pain with memories and images and anticipation of the next contact.  Nothing is more important than family and close friends….nothing.

 ·      When you are old you achieve a wisdom gained from facing and defeating adversity and of creating and tasting success but all too often the wisdom is left unshared because no one sought to hear it.

·       One_hand animated clock fast  When you are old, you think about time and those paralyzed hands that have been miraculously cured and now speed past the numbers in a frantic race toward —-what?  When you are old.

    And — finally, when you are gone they will speak with great emotion and affection about your fine qualities and contributions.  Words of high praise will be offered by those who mourn your loss.  Words never spoken aloud in the presence of the dearly departed.   Why?

 -0-

Bob Aronson is a 2007 heart transplant recipient, the founder and primary Bob_Aronson at Mayo Jax tight shot 2008-01-30DJH--02author 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.

Big Pharma They Love a Sick Population and Want To Keep it That Way


As most of our readers know I am not only a senior citizen but one who has had a heart transplant.  I am on Medicare, have supplemental insurance and also participate in Medicare Part D, the prescription drug program.

Both age and my status as a transplant recipient cause me to take several expensive drugs.  While anti-rejection drugs are fully covered by Medicare others for blood pressure, COPD and thyroid are not.  They are expensive, very expensive and while in the so-called “Donut hole” we have paid nearly $1,000 a month so the price of prescription drugs is a big issue in our home.  Upon passage of the affordable care act the cost was cut in half but $500 a month is still a lot of money.  That’s my lead in to this question.

Will someone please offer a reasonable, understandable and clear explanation as to why Medicare is not allowed by law to negotiate the price of drugs?  I have researched this issue for hours and can’t find a simple explanation.  There are a lot of convoluted, rambling excuses but not a clear reason.  Here’s an example of the reasoning Pharmaceutical companies use for their opposition to allowing Medicare to negotiate the price of drugs (like the Veterans Administration does).  “Federal price negotiations would represent a policy change carrying significant risks for research and development investment in new and improved medicines. A substantial body of research shows that similar federal drug programs impose prices substantially lower than those negotiated in the private sector, and that such lower prices inevitably will reduce research and investment in new and improved medicines. This slowdown in pharmaceutical innovation will yield highly adverse effects upon future patients in terms of reduced life expectancies.”

Yakkity, Yak, blah, blah, blah!.  On one hand big pharma tells us that negotiating drug prices would cut research money while on the other hand we learn they have spent $2.3 billion on lobbying and $183 million on campaign contributions since 1998, according to the Center for Responsive Politics. The ready money serves as a strong deterrent against any legislative proposal that would lower costs for consumers and profits for the drug makers.  Furthermore keeping drug prices high for seniors adds $150 to $300 Billion to drug industry profits over a ten year period. The increased costs hit the pockets of both seniors and taxpayers.

Yeah, those poor pharma people sure are hurting.  When you are willing to spend over $2 Billion to protect your profitability, profitability must be sky high.  I don’t know how, in good conscience any member of congress or the President of the United States can oppose giving Medicare the right to negotiate the price of drugs.  They are, after all, probably the biggest supplier of drugs in the world but that’s not the end of the pharma, health insurance, special interest war on us (yes us, you and me) campaign.

Let us take a look at the drugs that keep organ transplant patients alive. They are called immunosuppressants or more commonly, anti-rejection drugs.  Here’s the story. If you are of retirement age or disabled or somehow covered by Medicare they will pay 80% of the cost of an organ transplant and the full cost of those absolutely necessary anti- rejection drugs for the rest of your life.  Without them organ transplant patients would die.

Here’s the rub —  If you have kidney disease (only kidney patients are eligible for this program) and are not disabled or of retirement age Medicare will pay 80% of the cost of the transplant but will only provide you with free anti-rejection drugs for thirty six months.  Some people would say, “That’s fair, a person should be able to go back to work and pay for their own drugs,” and that is a reasonable thought but the price of anti-rejection drugs is anything but reasonable.  They can cost from $1,000 to $3,000 per month, for life.  If you stop taking them your body will begin to reject your organ and you could die.

Now here’s where the story becomes absolute nonsense.  Let’s assume you can’t pay for the drugs and you go into rejection and are hospitalized.  Medicare will pay 80% of the cost of your care and even 80% of the cost of another transplant and if a transplant able organ is not available they will pay for you to be on dialysis for the rest of your life.  Taxpayers spend more than $20 billion a year to care for about 400,000 people who get dialysis treatments — about $77,000 per patient.  The most that anti-rejection drugs would cost would be less than half that amount, $36,000 per year, yet congress refuses to allow Medicare to pay for the drugs. Every year a bill is introduced that would at least extend the 36 month period if not eliminate it entirely but it is defeated every time.

If you think all of this is pretty stupid, it gets dumber. One of the organizations that has opposed extending the 36 month period is the National Kidney Foundation (NKF).  NKF says they oppose the added benefit because money to pay for it would have to come out of dollars earmarked for dialysis coverage, but wait…if patients had the drugs they wouldn’t need dialysis, would they?  Do you get the idea that NKF has an interest in keeping the dialysis industry alive?  The dialysis industry is huge and there are only two major players.  If you want to learn more about this industry go to http://www.propublica.org/article/in-dialysis-life-saving-care-at-great-risk-and-cost

There is an adage that says  you shouldn’t let the fox guard the chicken coop but it seems that is what has happened in health care generally but certainly in the two situations I outlined here.  According to Open Secrets.com, The Pharmaceutical industry alone spends billions of dollars on influencing our lawmakers…here’s the chart…

Top Contributors, 2011-2012

Contributor

Amount

Pfizer   Inc

                $1,287,136

Amgen   Inc

                 $1,017,312

Abbott   Laboratories

                 $868,480

Stryker   Corp

                 $819,464

AstraZeneca   PLC

                 $794,863

Merck   & Co

                 $763,935

Johnson   & Johnson

                 $716,541

Upsher-Smith   Laboratories

                 $612,900

Eli   Lilly & Co

                 $571,179

McKesson   Corp

                 $555,125

4Life Research

                 $539,950

EOE   Inc

                 $525,000

GlaxoSmithKline

                 $493,472

Masimo   Corp

                 $469,468

AmerisourceBergen   Corp

                 $461,877

Roche   Holdings

                 $458,940

Novartis   AG

                 $454,089

Harris   Frc

                 $351,000

Bayer   AG

                 $341,715

Sanofi

                 $299,526

Contributions to Democrats  Republicans  Outside Spending Groups

Top Recipients, 2011-2012

Candidate

Office

Amount

Obama, Barack (D)      $785,385
Romney, Mitt (R)      $622,986
Hatch, Orrin G (R-UT)

Senate

     $327,627
Upton, Fred (R-MI)

House

     $253,615
Brown, Scott (R-MA)

Senate

     $246,953

This election cycle has us talking about the economy and where our money is going and it’s missing the boat completely.  Your money, most of your money, maybe all of your money will eventually go to the Pharmaceutical companies and there is little or no control over them.  The spend Billions of dollars influencing our lawmakers to make sure that their profitability is left unchecked and for the most part it is.

It is big Pharma that doesn’t want Medicare to negotiate the price of drugs, so you pay more, it is big Pharma that inflates the price of some drugs to such a high point that some families either can’t afford them and die or lose everything to pay for them.  It is big Pharma that produces drug X for $5.00 in Mexico and the same drug for $50.00 in the U.S. and then they want a ban on going to Mexico to get it cheaper.  It is big Pharma that gouges the elderly to the point where some have to choose between eating and taking their meds.  These ultra capitalists have no heart and no soul.  They think, eat, sleep and dream profits and boy are they good at it.

Healthcare has long been one of my favorite topics and while it has taken me far to long to arrive at this conclusion I have arrived.  It seems quite obvious that the nearly $1 trillion a year worldwide pharmaceutical business primary goal is to make sure we either are sick or think we are sick.   Consider this, they don’t make a dime on dead or well people so making us sick or having us believe we are sick is good for business.  Think about all the syndromes we hear about restless legs, carpal tunnel syndrome, cervical syndrome, chediak-higashi syndrome, chinese restaurant syndromeonder chronic fatigue immune dysfunction syndrome, churg-strauss syndrome, conn’s syndrome, cornelia de lange syndrome  and costochondral syndrome…and this is a short list.  All of those syndromes, real or imagined are treated by some sort of medication, expensive medication.  the Pharmaceutical companies love syndromes and discover them with great regularity so they can convince physicians to diagnose them and then prescribe for the malady.

Isn’t it interesting that none of the current crop of politicians ever talks about this elephant in the living room. Pharmaceutical companies have a vested interest in keeping us just a little bit sick so they can sell the expensive treatments they have developed.  Which makes you this, “do they ever seriously look for cures?”  Why would they?   There’s nowhere near as much money in a cure as there is in a new drug to treat an existing condition.

And…consider this, too.  There is a wide variety of serious diseases that affect very few people, they are called “Orphan” diseases like  acrocephalosyndactylia, Acrodermatitis, Addisons disease,Aamyotophic Lateral Sclerosis, Adie Syndrome, Amylose, Asperger Syndrome,Barret Esophagus, Bardet-biedl syndrome and thousands more.  These diseases are rare enough that little research big Pharma money is spent on trying to find either cures or treatments because there’s not enough potential profit in it.   Why spend money on a disease that affects a few thousand when you can develop a drug that affects millions and increase profits substantially.

Big Pharma control of our health and what we pay to either fix it or keep it is an issue that affects everyone but for some strange reason we’d rather talk about who marries who, Prince William’s nudity in a hotel and tax cuts for rich people.  Americans ought to wake up and see what is really affecting their daily lives and their wallets.  It’s not two women who want to marry each other.  It’s big Pharma and if you look closely at any time of the night or day they have a hand in your wallet.

 

 

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.

If You’re Not Disabled, Don’t Park There!


I’ve taken time off from blogging for the last few months because I was taking care of myself with my own self styled mental/emotional therapy.  For fifty years my parents ran a “Mom and Pop” side street grocery store in my home town of Chisholm, Minnesota.  To honor and remember them I have built from memory and a pitiful few photographs, a scale model replica of the store and the attached house.  The project took the better part of two years and was completed yesterday Sunday November 1, 2009.  When I get some pictures taken I will post them. 

As to blogging, there is something that has bothered me for quite some time and that is the fact that there seems to be a great number of people using disabled parking illegally.  As you know I had a heart transplant a little over two years ago.  My new heart is working extremely well and if anything I have more energy than ever before.  Unfortunately I have COPD (chronic oppressive pulmonary disease) which makes it extremely difficult for me to breathe.  Almost any exertion leaves me out of breath so I have a disabled parking permit and use the spaces often.  They are a Godsend when you can’t walk very far.

What disturbs me is the number of people who think the rules don’t apply to them and when it comes to disabled parking they fall into two categories, 1) those without permits that ignore the signs and 2) those that have permits that belong to someone else. 

The first group is easy to deal with.  If you see a vehicle in a disabled space that has neither special license plates nor a permit hanging from the rear view mirror, notify the authorities.  In most cases there is at least a $250 fine for this deliberate violation of the law and of the rights of the disabled.

The second group is more difficult to deal with.  I fully recognized that not every disabled person is in a wheelchair, I’m not so in many cases when I see people hang the tag on the mirror and walk to the store I ignore it.  People deserve the benefit of the doubt.  But, when I see people park, display the permit and then sprint across the lot into a store I get angry.  Too many able bodied people use permits issued to friends or family members.  I know of some people who are using permits that were owned by deceased relatives.  How disrespectful can you be?

Many people who are awaiting transplants but are ambulatory need those spaces.   They are not reserved for lazy people but rather for those who genuinely need to be close because they can’t walk very far.  Many other people who are not transplant candidates also have very serious disabilities that require them to park as near to their destination as possible.  Without disabled parking many people would be forced to either stay at home or face the danger of having to walk farther than they are physically capable of doing.

I was at an art show with my wife recently and I parked in one of the few disabled spaces that were available.  Two burly guys in a pickup truck pulled in next to me in the space reserved for Vans for the disabled and began to sprint away.  I rolled down the window and told them it was not a parking space and that they should move.  They got quite belligerent and after several profanities and hand gestures they grudgingly moved — a half block away.  I’ll bet the walk absolutely exhausted them.

You should do the same.  Challenge people who park illegally, notify the authorities.  The space they occupy may be the one you or a loved one will need someday.

Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – spread the word about the immediate need for more organ donors.  On-line registration can be done at http://www.donatelife.net/index.php  Whenever you can, help people formally register.  There is nothing you can do that is of greater importance.  If you convince one person to be a donor you may save or positively affect over 50 lives.  Some of those lives may be people you know and love.  

You are also invited to join Organ Transplantation Initiative (OTI) http://www.facebook.com/#!/group.php?gid=152655364765710 a group dedicated to providing help and information to donors, donor families, transplant patients and families, caregivers and all other interested parties.  Your participation is important if we are to influence decision makers to support efforts to increase organ donation and support organ regeneration, replacement and research efforts.   

Wake Up UNOS! It’s Not Working!


Is it ethical to compensate people for their organs?  That is the question that has perplexed ethicists since long before human organ transplantation became a reality.  Even 18th century philosopher Emmanuel Kant had thoughts on the subject because the poor were being exploited for their teeth, teeth that were transplanted into the empty gums of the very rich. 

Is a global market for organ sales the answer?   Can a for-profit system exist, save lives, and still not exploit the poor? A series of experts — medical doctors, international health experts, and ethicists — looked at the issue on Feb. 8, 2008 in the second of four Harvard conferences on current controversies in global health.               http://organizedwisdom.com/helpbar/index.html?return=http://organizedwisdom.com/Ethics_of_Human_Organ_Transplants&url=www.news.harvard.edu/gazette/2008/02.14/01-organs.html

The present altruistic system of obtaining and allocating organs in the United States simply doesn’t work.  When you have a situation in which there are one hundred thousand people waiting for organs and several thousand dying because of no organ availability then something must change. There are many options but medical ethicists and UNOS (United Network for Organ Sharing), which controls the entire American system, are so hung up on the ethics of transplantation that change has become impossible albeit extremely necessary.  While the ethicists argue people are dying.

I write this blog not as an advocate for selling human organs but as an advocate for the dying.  What is wrong with considering some sort of compensation?   I believe we can avoid a situation in which the desperately poor are lured into selling their organs and become vulnerable to exploitation in the growing industry known as “transplant tourism.”

Some time ago I wrote a blog headlined, “Would you sell a kidney for $47.000.  The blog outlined a plan by an Australian physician that would set up such a system.  It was not an offer to buy a kidney.  Yet, I have received at least a dozen emails from people who want to sell their kidneys.  Some have good reasons others just say they need the money.

I don’t believe in setting up a worldwide market for human organs.  I believe as do many ethicists that the poor, underprivileged and uneducated would become victims.  I do, however, believe that we can compensate people in some manner, perhaps paying for related medical expenses (especially in the case of kidney donors who may have uncovered complications).  There may also be some merit in compensating donors for funeral expenses. 

According to Luc Noël, who tracks transplantation issues for WHO (World Health Organization of the United Nations) in Geneva, in the United States alone, one additional donated kidney a month to each of 58 donation service areas would create equilibrium — an equal number of waiting patients and available organs — by 2013.

The point it that we must do something.  To let UNOS continue to stonewall this horrible situation is unforgivable.   At least try a new plan in a test site for a year or two.  Perhaps a combination of presumed consent and some sort of compensation would be workable but let us at least test a concept instead of continually discarding all options without trial. 

Every year thousands die waiting for organs yet there is no public outrage.  Why not?  Why aren’t we all angry about the fact that people are dying unnecessarily? It is time that the number of available organs increased.  The altruistic approach isn’t working UNOS!  It is killing people and your intransigence is responsible. 

BOBSERVATIONS — WHAT I LIKE AND WHAT MAKES ME TIRED


I’m tired of people who say, “It can’t be done, it won’t work,” when it comes to presumed consent and/or an organ compensation program.  Why don’t you offer solutions instead of more problems?  If you can’t offer a solution, be quiet! 

 

I like OPOs (organ procurement organizations).  They do a wonderful job of trying to solve the organ shortage.  They are almost unknown and invisible.  They are some of the kindest most caring people I have ever met.  Thanks OPOs.

 

I’m tired of seeing LifeSharers go unchallenged.  The fact is LifeSharers has not saved a single member’s life.  In order to be effective LifeSharers would have to enroll about 85 percent of the 300 million Americans.  Currently they have 11,000 members.  If they quadrupled their current growth rate, it would still take 125 years for them to reach a million.  LifeSharers is a cruel fantasy.

 

I like blogging about organ donation.  I’ve learned a great deal and hope that in some small way someone has been helped.

 

I’m tired of politicians who are afraid to rock the boat.  If they had any guts and if they really cared about saving lives they would work to change the present organ donation system. Each year more people die and they make no attempt to change the system.  This one makes me tired and angry!

 

I like organ donors, donor families and organ transplant patients.  They are good and kind people.  I am moved every time I hear their stories and am so very grateful to my donor family.

 

I’m tired of the news media and their emphasis on Britney Spears, Paula Abdul and bloody crashes.  Why can’t they do more on organ donation, the problems of people without health care insurance and seniors who have to choose between taking medication and eating.  I don’t care about Britney!

 

I like MSNBC’s Morning Joe (www.morningjoe.com).  We’ll see if I still like Joe and Mika after the election when they’ll have to discuss other issues.  Maybe organ donation will be one of them. 

 

I’m tired of apathy.  If you are not an organ donor why not?  Give me one legitimate reason for not registering, just one reason.  

 

I’m tired of ethicists.  It seems all they ever do is to find more reasons we can’t change the organ donation system.

 

I like the Mayo Clinic.  They saved my life and treat me with respect.

 

 

Please visit my Facebook site “Organ Transplant Patients, Friends and You.”   http://tinyurl.com/225cfh.  

 

%d bloggers like this: