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Why Prescriptions Cost So Much and What You Can Do About It


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A couple of weeks ago the news was filled with stories about Martin Shkreli the CEO of Turing Pharmaceuticals, a relatively small drug manufacturer. Some media branded him with this headline world's biggest a holebecause he raised the price for one pill of Daraprim, a 62 year old drug,
from $13.50 to $750. That’s about 5,000 percent. Now, he says he will lower the price, but there’s no indication of how much or, as of this writing, when (According to Web MD Daraprim is used with other medication (such as a sulfonamide) to treat a serious parasite infection (toxoplasmosis) of the body, brain, or eye or to prevent toxoplasmosis infection in people with HIV infection).

As it turns out, though, the “World’s Biggest A–Hole case is not in the least bit unusual, it happens with pharmaceutical companies with great regularity as a tactic to increase profits on older drugs, drugs that have long since paid for themselves.

The global market for pharmaceuticals topped $1 trillion in sales in 2014. The world’s 10 largest drug companies generated $429.4 billion of that revenue. Five of these companies are headquartered in the U.S. They are: Johnson & Johnson, Pfizer, Abbot Laboratories, Merck and Eli Lilly.

Johnson and Johnson, America’s biggest pharmaceutical manufacturer raised prices on over 130 brand name products this year alone. Merck & Co. raised the price of 38 drugs. The increases in the U.S. have added over a billion dollars of revenue in the last three years. So, while Mr. Shkreli may get the award for being the biggest you know what, he is in good company — only the others were smart enough not to brag about it.

Before I go on it is important to point out that my interest in the topic is both personal and professional. 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.

In Europe, Asia, Australia and anywhere else with some form of socialized medicine strict government regulation helps prevent those kinds of actions and subsequently keeps prices down. Things are a whole lot looser in the U.S.

In 2013 each of us spent over $1,000 on prescription drugs. That works out to $429 billion. In case that figure boggles your mind, let me boggle it more by showing you what it looks like in black and white — $429,000,000,000. By anyone’s measure that’s a lot of money. To put it all in perspective Prescription medications make up close to 10 percent of the $2.9 trillion annual total spent on healthcare in the U.S.

Americans spend more on drugs than any other country in the world and – we also pay more for them than any other country.

big pharmaBefore we go into detail on why prescription drugs cost more here than anywhere else, let’s look at the biggest drug and biotech companies in the world. They account for more than a third of the industry’s total market share according to the World Health Organization. We won’t go into detail but here’s the top ten and their 2014 revenue.

  • Gilead Sciences $24.474 billion.
  • Bayer $25.47 billion.
  • AstraZeneca $26.095 billion.
  • GlaxoSmithKline $37.96 billion.
  • Merck’$42.237 billion.
  • Sanofi $43.07 billion.
  • Pfizer 49.605 billion.
  • Roche $49.86 billion.
  • Johnson & Johnson $74.331 billion.

If you were to ask any of those companies why prescription drugs cost so much they would likely tell you that the price reflects the immense costs of research and development. They would explain that it costs millions andcosts millions of dollars to develop a new drug and then millions more to get through animal and human studies and FDA approval, and that’s partially true. Partially. Those costs are very high, but what big pharma won’t tell you is that you are also paying for the costs of marketing the drug to physicians and patients and those costs dwarf the research and development expense. http://tinyurl.com/pr23j3q

The world’s largest pharma company, Johnson & Johnson, spent $17.5 billion on sales and marketing in 2013, compared with $8.2 billion for R&D. Most of that marketing effort is aimed directly at physicians, the people who write the prescriptions, rather than customers like you and me. It should be noted that the U.S. and New Zealand are the only two countries that allow any form of advertising for prescription drugs.

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. At the risk of being accused of repetitiveness I must say again. We pay significantly more than any other country for the exact same drugs. United States spends more than $1,000 per person per year on pharmaceuticals. 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 why is that?

Well, first the U.S. is a very rich and therefore lucrative market because we use more medicine than any other developed country. We account for 35 percent of the world market for pharmaceuticals. Americans have become quite accustomed to leaving their doctor’s office with a handful of prescriptions.

Due to our ill health and our wealth, companies often choose the U.S. in which to launch new products. And, because the US market is so big and profitable, investments in research and development have long been steered towards meeting clinical needs.

But if we Americans take more prescription drugs, we also pay an arm and a leg more for them. Why? Because other countries have tough regulations about pharmaceutical prices and they set reimbursement limits. MedicareAnother smart thing they do is to agree to pay for a drug only if the price is justified by the medical benefits. In the U.S., Medicare which is the world’s largest buyer of prescription drugs is prohibited from negotiating prices with drug companies. If the company says that a pill is $100, Medicare has no choice, but to pay it if the patient needs it. They have no wiggle room and that costs taxpayers billions of dollars a year in a direct giveaway to the pharmaceutical behemoths and speaks to the power of their lobbyists.

Speaking of lobbyists, here’s the real rub. The pharmacy industry views congress as a place to invest against future price controls and this is what really adds to the price of your prescriptions.

Big Pharma Spends More on Lobbying Than Anyone
lobbyistsSince 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.

Now here’s how it works for you and me. In the U.S. insurers only accept the price set by the drug makers. If the drug is exclusive, meaning there is no competing medication from other companies. Insurers then cover the total cost by forcing a higher co-pay on patients. Unlike Medicare, insurers have bargaining power when there are competing drugs and therefore can reduce the co-pays.

generic drugs1Then, there is the Generic drug market, those are drugs in which the patent has run out and other manufacturers are allowed to produce the product. As an example the antidepressant Remeron is also known by its generic name Mirtazapine. Remeron is the brand name given it by the original manufacturer, but Mirtazapine can be made and distributed by any pharma company and sold for a much lower price.

Competition in that area is fierce and generic drug prices are usually low. Today generics account for about 85 percent of drugs dispensed in the U.S.

Despite generics and their low prices, there are still many Americans who daily make the choice between food or drugs, between paying the rent and drugs or giving up some other type of health care in order to afford the drugs that keep them going. Many Americans don’t take their recommended prescriptions because they can’t afford them. One recent survey showed that about one in five U.S. adults did not fill their prescription or skipped doses due to cost as opposed to Australia and some other countries where the ratio is one in ten. http://tinyurl.com/pejvoyn

Some people have turned to foreign sources for their prescriptions and advairthere are many with some of the more popular ones thriving in Canada. Here’s an example of the savings that can be had. If you want a three month supply of the popular asthma inhaler Advair it will likely cost you somewhere in the neighborhood of $600 to purchase it from one of your local pharmacies. If you select one of the Canadian pharmacies you can import the same three month supply of the same medication, Advair, for about $150, with shipping included. That amount may not mean much to the Donald Trump tax bracket, but to average Americans it’s a whole lot of money. Advair is just the tip of the iceberg. ABC news reports the following price comparisons:

  • Mirapex, for Parkinson’s disease: $157 in Canada vs. $263 in the United States.
  • Celexa, for depression: $149 in Canada vs. $253 in the United States.
  • Diovan, for high blood pressure: $149 in Canada vs. $253 in the United States.
  • Oxazepam, for insomnia: $13 in Canada vs. $70 in the United States.
  • Seroquel, for insomnia: $33 in Canada vs. $124 in the United States.

Tufts University in Boston released a study in the year 2000 that placed the cost of approval for a single drug at $802 million, and that was fifteen years ago. To be fair it must be revealed that the dollar amount adds in each successful drug’s prorated share of failures (only one out of fifty drugs eventually reaches the market), but that still does not explain why the retail price is higher here than anywhere else.

The only logical explanation I can come up after some a fair amount of research is that pharmaceutical companies can get away with much higher prices in the U.S. and they can’t elsewhere. Period!

So what are your options, what can average patients who have difficulty Optionaffording some drugs do to stay healthy and be able to eat and pay their rent and other bills at the same time?

Well, there are several steps you can take. Among them are:

  • Contact state and federal legislators and ask them to allow Medicare to negotiate the price of prescription drugs
  • Also ask them to allow importing of essential drugs from foreign companies through approved pharmacies.
  • Ask big pharma companies to see if you qualify for their reduced prices for people who have trouble affording them.
  • Read the Consumers Report story on the issue. It will give you the information you need to identify trustworthy pharmacies. http://tinyurl.com/qbflucm

But, if you are like me you want even more detail. Ok. Here’s the best I can do.

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#/  orhttp://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 in price from $526.00 at Wall Mart to $584 at Target. If you are a heart patient and take Carvedilol in my neighborhood it ranges from $4.00 at Wal Mart 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 savecouponmoney 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 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 CR tips.
  • 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.
  • 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.
  • Get a refill for 90 days, not 30 days. Most pharmacies offer discounts on a three-month supply.
  • Consider paying retail. At Costco, the drugstore websites, and a few independents, the retail prices were lower for certain drugs than many insurance copays.
  • 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.)
  • Experts say that although the low costs could entice you to get your prescriptions filled at multiple pharmacies, research indicates that 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.

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bob half of bob and jay photoBob 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. Then, when registered, tell your family about your decision so there is no confusion when the time comes.

 

Commonly Used Medical Terms Made Clear


By Bob Aronson

cartoonTo most of us the abbreviations and phrases used in the medical world are another language from another planet.   Few understand what is written on the prescription they take to the pharmacy just as they don’t always understand the discharge instructions they get from a hospital or an emergency room.

To save time and clarify communication internally medical professionals have developed a very special system of codes, abbreviations and phrases that are quite exact in their meaning.  Unfortunately these same professionals often forget that the rest of us don’t have their training, education and expertise and use this “internal” language on patients who are often left dumbfounded because of a reluctance to ask for clarification.

The picture to the right is a real prescription and when you see it for the first time you probably are struck by the sameillegible prescription question most of us have, “How on earth does the pharmacist read that mess?”  Well,  the answer is that pharmacists understand the code words, phrases and abbreviations used by physicians but, they get stumped just like you do so they call and ask for clarification.   You should do that, too.   If you aren’t perfectly clear about what your medicine is and what it does you should seek clarification  first from your doctor and then from the pharmacist.

The list of common medical terms below was taken from several sources and I have tried to simplify it as best I could but should you be confronted with these terms or others not listed here that you still don’t understand don’t be afraid to ask and ask again until you have a perfectly clear explanation.  After all, it is your health, your body and your life and the medical people owe you a clear explanation of your condition, your diagnosis, prognosis and treatment plan including the medicine they have prescribed and what it does.

Miscommunication can be deadly.  You owe it to yourself to ask a lot of questions.  If you have done that and find that after processing what you heard you have more questions you should call your physician’s office for clarification. Do the same with your pharmacist or any other medical professional with whom you have contact.

Below is a list of the most common medical terms and abbreviations.  Note…you will see a mixture of upper and lower case entries.  These are not typos.   It is the way they are actually written.

Common prescription terms and abbreviations

AD: up to (defining a limit.)

BUSS: Inside the cheek

C: (With a straight line over the top ): With

cf: With food

h.s.: at bedtime

bid: twice a day

tid: three times a day

qd: daily

o.p.d.: once per day

q.a.d.: every other day

q.i.d: four times a day

sig: write on label

SL: sublingually, under the tongue

WF : with food

Terms and abbreviations used in prescriptions and elsewhere

a.c.: Before meals. As in taking a medicine before meals.

Ad lib At liberty. For example, a patient may be permitted to move out of bed freely and orders would, therefore, be for activities to be ad lib.

AKA: Above the knee amputation.

Anuric: Not producing urine.  That means the patient may need dialysis.

Bibasilar: At the bases of both lungs. For example, someone with pneumonia in both lungs might have abnormal  breath sounds.

BKA: Below the knee amputation.

BMP: Basic metabolic panel blood test.

BP: Blood pressure.. Blood pressure is one of several vital signs.

BSO: Bilateral salpingo-oophorectomy.  The removal of both of the ovaries and adjacent Fallopian tubes often part of a total abdominal hysterectomy.

C/O: Complaint of. The patient’s expressed concern.

cap: Capsule.

CBC: Complete blood count

CC: Chief complaint. The patient’s main concern.

cc: Cubic centimeters.

Chem panel: Chemistry panel. A comprehensive screening blood test to determine the status of the liver, kidneys and electrolytes.

COPD: Chronic obstructive pulmonary disease.

CVA: Cerebrovascular Accident (stroke)

D/C or DC: Discontinue or discharge. Adoctor will D/C a drug or DC a patient from the hospital.

DM: Diabetes Mellitus.

DNC, D&C, or D and C: Dilation and curettage.  Widening the cervix and scrapping with a curette for the purpose of removing tissue lining the inner surface of the uterus.

DNR: Do not resuscitate. This is a specific order not to revive a patient artificially if they succumb to illness. If a patient is given a DNR order, they are not resuscitated if they are near death and no code blue is called.  Usually requested by the patient or family.

DOE: Dyspnea on exertion. Shortness of breath with activity.

DTR: Deep tendon reflexes. These are reflexes that the doctor tests by banging on the tendons with a rubber hammer.

DVT: Deep venous thrombosis (blood clot I large vein).

FX: Fracture.

H&H: hemoglobin and hematocrit.  When the H & H is low, anemia is present.

H&P: History and physical examination.

h.s.: At bedtime. As in taking a medicine at bedtime.

H/O or h/o: History of. A past event that occurred.

HA: Headache.

HTN: Hypertension (high blood pressure)


I&D: incision and drainage.

IM: Intramuscular.. This is a typical notation when noting or ordering an injection (shot) given into muscle..

IMP: Impression. This is the summary conclusion of the patient’s condition by the healthcare practitioner at that particular date and time.

In vitro: In the laboratory.

In vivo: In the body.

IU: International unit

JT: Joint

K: Potassium. An essential electrolyte frequently monitored regularly in intensive care.

KCL: Potassium chloride.

LBP: Low back pain. LBP is one of most common medical complaints.

LLQ:: Left lower quadrant.

LUQ:: Left upper quadrant..

Lytes: Electrolytes (potassium, sodium, carbon dioxide, and chloride).

MCL: Medial collateral ligament.

mg: Milligrams.

ml: Milliliters.

MVP: Mitral valve prolapse.

N/V: Nausea or vomiting

Na: Sodium. An essential electrolyte frequently monitored regularly in intensive care.

npo: Nothing by mouth. Often ordered when a patient is about to undergo surgery requiring general anesthesia.  It means no food or drink.

O&P: Ova and parasites.  Stool O & P is tested in the laboratory to detect parasitic infection in persons with chronic diarrhea..

O.D.: Right eye.

O.S.: Left eye.

O.U.: Both eyes.

ORIF: Open reduction and internal fixation such as with the orthopedic repair of a hip.

P: Pulse. Pulse is recorded as part of the physical examination. It is one of the “vital signs.”

p.o.: By mouth. From the Latin terminology per os.

p.r.n.: As needed. Example a pain killer may be taken only when the patient has pain or “as needed.

PCL: Posterior cruciate ligament..

PERRLA: Pupils equal, round, and reactive to light and accommodation.

Plt: Platelets, one of the blood forming elements along with the white and red blood cells.

PMI: Point of maximum impulse of the heart when felt during examination, as in beats against the chest.

q2h: Every 2 hours. As in taking a medicine every 2 hours.

q3h: Every 3 hours. As in taking a medicine every 3 hours.

qAM: Each morning. As in taking a medicine each morning.

qhs: At each bedtime. As in taking a medicine each bedtime.

qod: Every other day. As in taking a medicine every other day.

qPM: Each evening. As in taking a medicine each evening.

R/O: Rule out. Doctors frequently will rule out various possible diagnoses when figuring out the correct diagnosis..

REB: Rebound, as in rebound tenderness of the abdomen when pushed in and then released.

RLQ: Right lower quadrant. The appendix is located in the RLQ of the abdomen.

ROS: Review of systems. An overall review concerns relating to the organ systems, such as the respiratory, cardiovascular, and neurologic systems.

RUQ: Right upper quadrant. The liver is located in the RUQ of the abdomen.

s/p: Status post. For example, a person who had a knee operation would be s/p a knee operation.

SOB: Shortness of breath.

SQ: Subcutaneous.. This is a typical notation when noting or ordering an injection (shot) given into the fatty tissue under the skin, such as with insulin for diabetes.

T: Temperature. Temperature is recorded as part of the physical examination. It is one of the “vital signs.”

T&A: Tonsillectomy and adenoidectomy.

tab: Tablet

TAH: Total abdominal hysterectomy..

THR: Total hip replacement.

TKR: Total knee replacement.

UA or u/a: Urinalysis.. A UA is a typical part of a comprehensive physical examination.

URI: Upper respiratory infection like sinusitis or the common cold

ut dict: As directed. As in taking a medicine according to the instructions that the healthcare practitioner gave in the office or in the past.

UTI: Urinary tract infection.

VSS: Vital signs are stable. This notation means that from the standpoint of the temperature, blood pressure, and pulse, the patient is doing well.

Wt: Weight. Body weight is often recorded as part of the physical examination.

Commonly used prefixes and suffixes

http://www.bubblews.com/news/2020191-what-did-the-doctor-just-say-some-common-medical-terms-prefixes-and-suffixes

Prefixes

1. “Angio…”
Related to the blood vessels
(Angioplasty, etc.)

2. “Lobo…”
Relating to either the brain or lungs.
(Lobotomy, etc.)

3. “Nephro…”
Relating to the kidneys.
(A Nephrologist is a doctor who specializes in medical conditions impacting the kidneys.)

4. “Hyster …”
Relating to the uterous.
(Hysterectomy, etc.)

5. “Gastro …”
Relating to the atomach
(Gastroenteritis, etc.)

6. “Myo…”
Related to muscle tissue.

6. “Arthr…”
Related to the joints.
(Arthritis, arthoscopic surgery, etc.)

7. “Encephal…”
Related to the brain
(Encephalitis, encephlitiform activity, i.e. seizures.)

Suffixes

1. Something or other… “itis”
Whatever the ‘something’ is is inflamed and possibly infected.
(Pancreatitis, appendicitis, tonsilitis, etc.)

2. “…ectomy”
The removal of whatever body part precedes it.
(Appendisectomy, tonsilectomy, hemorrhoidectomy, hysterectomyetc.)

3. “… otomy”
A surgical incision into whatever precedes it.

4. “… scentesis”
The surgical puncturing of something – deliberately
(Amnioscentesis to draw fluid from the uterine sac to check on the condition of a fetus.)

5. “…septic”
From a Greek word meaning putrefaction (rotting), as “spsis” it is used to refer to an infection of the entire system, particularly through the circulatory (blood) system and is considered quite seious.
The opposite, of course, is “Antiseptic”… the purification of something from germs and bacterial contamination.

6. “… ostomy”
The putting a hole in something in the hopes that it will help it function better.
(colonostomy)

7. “… plasty”
To modify or reshape.
(A “nose job” is a rhinoplasty, etc.)

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Bob informal 3Bob 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.

What’s In That Prescription Bottle and What Does It Do? Generic V. Brand


pay more get weel quicker By Bob Aronson

What’s In That Prescription Bottle and What Does It Do?

The question asked by our headline would seem to have an obvious answer but it doesn’t because there isn’t one.  We may know the medication that’s in the bottle but what It does is another story. Each drug has a primary effect and many side effects.  Side effects can be minimal or dangerous and we are left to trusting our physicians.  But, do they really know what they are prescribing?

According to Dr. Ben GoldacreDr. Ben Goldacre they don’t because they don’t have all the information they need.   Goldacre is a best-selling author, broadcaster, campaigner, medical doctor and academic who specialises in unpicking the misuse of science and statistics by journalists, politicians, quacks, drug companies, and more.

bad scienceHis first book “Bad Science” (4th Estate) has sold over 500,000 copies to date, is published in 18 countries, and reached #1 in the UK paperback non-fiction charts. bad pharmaBad Pharm, just out, is on bad behaviour in the pharmaceutical industry and medicine more broadly: it is now a top ten UK best seller.

Here’s what Goldacre says about, “What’s in that Bottle?”

“Doctors need the results of clinical trials to make informed choices, with their patients, about which treatment to use. But the best currently available evidence estimates that half of all clinical trials, for the treatments we use today, have never been published. This problem is the same for industry-sponsored trials and independent academic studies, across all fields of medicine from surgery to oncology, and it represents an enormous hidden hole for everything we do. Doctors can’t make informed decisions, when half the evidence is missing.

Most people react to this situation with incredulity, because it’s so obviously absurd. How can medics, academics, and legislators have permitted such a huge problem to persist? The answer is simple. This territory has been policed — and aggressively — by the pharmaceutical industry. They have worked hard to shut down public discussion on the topic, for several decades, with great success.

They say, for example, that the problem is modest, and that critics have cherry picked the evidence: but this is a lie. The best evidence comes from the most current review of all the literature, published in 2010. It estimates that half of all completed trials are left unpublished, and that trials with negative results are about twice as likely to be buried.

Then they pretend that the problem is in the past, and that everything has been fixed. But in reality, none of these supposed fixes were subjected to any kind of routine public audit, and all have now been well-documented as failures. What’s more, they all shared one simple loophole: they only demanded information about new trials, and this is hopeless. Anything that only gets us the results of studies completing after 2008 does nothing to fix medicine today, because more than 80% of all treatments prescribed this year came to the market more than ten years ago. We need the results of clinical trials from 2007, 2003, 1999, and 1993, to make informed decisions about the medicines we use today. This isn’t about catching companies out for past misdemeanors, it’s a simple practical matter of making medicine optimally safe and effective.” (You can watch Dr. Ben in action here  http://tinyurl.com/opvzsjn )

OK…having established that we need to force the FDA and big Pharma to release more information let’s turn to the subject of Generic drugs.  Are they really the same as he band name?  The answer is, “No, not entirely!”  Did you know they aren’t even tested?

busting the myths

For more on the generic story let’s turn to Dr. Tod Cooperman.  He is not only an MD but also the President of Consumerlab.com.  Here’s what he says,

“More than 80Dr. Todd Cooperman% of the drugs we take in the US are now generic versions of brand name medications. You may think that these drugs are equivalent to their branded counterparts, but that’s not always the case. Here are some important facts and tips to stay safe with generic drugs.”

Fact: You may get more or less active drug from a generic.

The FDA only requires that you get 80% to 125% of the drug into your bloodstream from a generic medication compared to the original drug. What’s even more concerning is that there are often many different generic versions of the same drug, and each of these may be different as well.  rx logoConsider this: If you take a generic which only meets the minimum requirement and refill that prescription with one that’s at the maximum limit, you’ve potentially increased the amount you get into your body by as much as 45% percentage points – and you would have no way of knowing this from the labels, but it could certainly affect you. The opposite could also happen, and you would be getting a lot less drug than you were previously – which could also affect you.

This is particularly troubling for medications for which blood levels must be kept in a narrow range in order to be effective and/or to avoid toxicity. These can include:

Thyroid medication

Anti-seizure medication

Blood thinners

Antidepressants

Antipsychotics

Asthma medications

Immunosuppressants

Fact: Other than the active ingredient, a generic may contain very different other binders and fillers.molecules

Most of the ingredients in a pill are not the active ingredient but other ingredients needed to hold the pill together, coat it, and control the way the pill delivers its drug in your body. These other ingredients can be different in a generic version of a drug. It is possible to have an allergic reaction or sensitivity to one of these ingredients. With some extended-release products, the brand name formula is still patented, so the generics may be completely different in their formulation. This can affect how fast or slow they release their drug and how this is affected by things like whether you take the pills with food or not. http://www.doctoroz.com/videos/what-you-need-know-about-generic-drugs

Fact: Generics are not tested like brand name medication.

While brand name medication is tested for safety and efficacy before being approved, generics are not. The only human test in people that is required is a bioequivalence test, conducted by the manufacturer in a small number of healthy individuals. This test must show that the product delivers approximately the same amount of drug into your blood stream and approximately the same rate.

Fact: Labels on most generic drugs are incorrect.FDALOGO

The FDA requires that the package inserts for generic drugs show the data (the “pharmacokinetic” data) from the brand name medication as if it is were based on the performance of the generic drug. In actuality, the data for the generic is typically different, but the FDA does not release this information.

Fact: In 2012, the FDA conceded that several generic antidepressant medications had never been tested and one was pulled from the market.

These were generic versions of Wellbutrin XL 300. One of them, called Budeprion XL 300 (Teva), had been on the market since 2006. Four others remain on the market. ConsumerLab.com drew attention to problems with this group of drugs in 2007 when it showed the Teva product did not dissolve like the original drug and many people switched to the drug reported that it was not working and some reported becoming suicidal. (Access to ConsumerLab.com’s report is available through a 24-hour free pass to Dr. Oz viewers. Visit ConsumerLab.com/DoctorOz now and get immediate access.)

So, given all that information, what do you do with it. Here’s what Dr. Cooperman suggests.

Guidelines if you are going to take Generic drugs

Guideline 1: Consider brand names for extended-release generic drugs.

While the active ingredients may be identical, the pills and their other ingredients in extended-release medications may not be. This makes extended-release generics, which typically have XL, ER, or SR in their names, more susceptible to delivering lower or higher amounts of the drug into your blood stream and at faster or slower rates than the brand name medication. As noted, this has been an issue with generic Wellbutrin XL 300. Concerns have also been reported with generic versions of Toprol XL. ConsumerLab.com has published reports on these products.

Guideline 2: Identify the manufacturer for generic drugs.

Not all generics behave the same way. If your generic is working, you should request the same manufacturer each time you refill that prescription. You can find the name (sometimes an abbreviation) on the bottle. Don’t be shy. You can call around to try to find the same product. Pharmacists will tell you which version they are currently selling and may be able to get the version you want.

Guideline 3: Find out if an “authorized” generic exists for your drug.

These are generics typically made by the same manufacturer of the brand name medication but sold under a generic brand name. They are not “similar” to the brand name drug – they are identical to it. They just have a different imprint on them. Ask your pharmacist if one exists for your medication.

Guideline 4: When switching to a generic, monitor your condition carefully.

When switching from a brand name to a generic drug, or from one generic to another, note any changes you feel and tell your doctor immediately. It could be a difference in the medication causing the changes in you.

If you have experienced an unexpected and adverse change in your condition after being switched to a generic medication, you or your doctor may also want to report this to the FDA though its MedWatch program. You can also report this to ConsumerLab.com, which may choose to investigate the issue.

Bob’s Newheart will be watching closely as more brand names become generic and we’ll report significant developments to you as we discover them.

Bob informal 3Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 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.

Please view our music video “Dawn Anita The Gift of Life” on YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs.  This video is free to anyone who wants to use it and no permission is needed.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. JAgain, write to me and ask for “Life Pass It On.”  I will email it to you immediately.  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  also 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 I will send the show and book ASAP.

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  (OTI).  The more members we get the greater our clout with decision makers.

En Espanol

Bob Aronson de Newheart de Bob es un centro receptor de trasplante 2007, el fundador de la Iniciativa de Facebook cerca de 3.000 miembros de trasplantes de órganos y el autor de la mayoría de estos blogs de donación / trasplante.

Usted puede dejar un comentario en el espacio proporcionado o por correo electrónico a sus pensamientos a mí en bob@baronson.org. Y – por favor difundir la palabra acerca de la necesidad inmediata de más donantes de órganos. No hay nada que puedas hacer lo que es de mayor importancia. Si se convence a una persona para ser un donante de órganos y tejidos puede salvar o positivamente afectará a más de 60 vidas. Algunas de esas vidas puede haber gente que conoces y amas.

Por favor, vea nuestro video musical “Dawn Anita The Gift of Life” en YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs. Este video es libre para cualquier persona que quiera usarlo y no se necesita permiso.

Si quieres correr la voz personal sobre la donación de órganos, tenemos otra presentación de PowerPoint para su uso gratuito y sin permiso. JAgain, escribir a mí y pedir “Life Pass It On.” Voy a enviar por correo electrónico a usted inmediatamente Esto no es un espectáculo independiente,. Necesita un presentador, pero es producido profesionalmente y objetivamente sonido Si usted decide utilizar el archivo. demuestro que también le enviará una copia gratuita de mi libro electrónico, “Cómo obtener un Standing” O “que le ayudará con habilidades de presentación. Sólo escribo bob@baronson.org y enviaré el programa y el libro lo antes posible.

Además … hay más información sobre este sitio de blogs de otros temas de donación / trasplante. Además, nos encantaría que te unas a nuestro grupo de Facebook, la Iniciativa de Trasplante de Órganos (OTI). Cuantos más miembros que tienen la mayor influencia en nuestra toma de decisiones.

Can’t Afford Your Meds? Here Are Some Resources


By Bob Aronson

We have a two-fold national disgrace here in America.  One is the high cost of prescription drugs and the other is that many people don’t take their medications because they can’t afford them and some have to choose between buying medication or food.

We hope that this blog helps you find the financial or other assistance you need to be able to take your meds, get well and also have food on the table.

While they no doubt have an axe to grind and a vested interest Insure.com http://tinyurl.com/cnchrm9 has its facts right.  Here’s what they say:

·         More than half (54 percent) of Americans say they currently take prescription medicines. According to a March 2008 report, “The Public on Prescription Drugs and Pharmaceutical Companies,” issued jointly by USA Today, the Kaiser Family Foundation and the Harvard School of Public Health, one in five Americans are currently taking four or more prescription drugs on a daily basis.

 ·       The report shows that a significant portion of those with prescriptions have difficulty affording them. Four in 10 adults (41 percent) say it is at least somewhat of a problem for their family to pay for prescription drugs they need, including 16 percent who say it is a serious problem. That leads to personal strategies for cutting back: Three in 10 (29 percent) say that they have not filled a prescription because of the cost in the last two years, and 23 percent say they have cut pills in half or skipped doses in order to make medication last longer.

Obviously there is a problem but it isn’t just one dreamed up by insurance companies to sell more policies, I hear similar stories every day on my Facebook group Organ Transplant Initiative (OTI).  Some people are not taking their meds and as a result their health is suffering.  That’s just not right. 

My last blog about the high cost of prescriptions includes one example of a drug for a rare disease that cost $250,000 a dose.  Cancer though is not a rare disease and some cancer drugs cost as much as $10,000 a dose.  Few can afford medicine that costs that much and most have no idea where to go for help. 

I wish I could report that you don’t have to go without your drugs because you can’t afford them.  Unfortunately, while there is help available, not everyone will get it but you’ve got to try.  I took the liberty of doing some research to find that help and even though I know there are resources I missed I’m hoping that those I have attached here will be of some help to someone.

If your doctor prescribes an expensive drug and you’re uninsured or can’t afford the co-pays, don’t despair. So-called patient-assistance programs, many of them run by pharmaceutical companies, are available to help you get the drugs you need.

Each patient-assistance program sets its own eligibility requirements. The income limits vary widely, from 100% of the federal poverty guidelines (which in 2009 stood at $22,050 for a family of four) to over 300% of the guidelines, according to Rich Sagall, MD, president of NeedyMeds, an online clearinghouse of information for people who cannot afford medicine.

Most patient-assistance programs require the applicant to be an American citizen or legal resident, and most are restricted to the uninsured. “Most programs help people with no insurance, but some will help the underinsured,” says Dr. Sagall. For instance, some companies will provide medications to patients who have reached the limit of their prescription insurance; others help people on Medicare Part D, the federal drug-subsidy program. In general, however, if you qualify for government-funded programs (such as Medicaid), you probably will not be eligible for most patient-assistance programs.

NeedyMeds is an excellent website and resource http://www.needymeds.org/ this site should be your first stop in a search for assistance.

Forbes magazine offers some great information on specific drugs. http://tinyurl.com/kmjxf5n

Forbes…when patients can’t afford medication http://www.forbes.com/sites/larryhusten/2011/08/12/guest-post-when-patients-cant-afford-a-medication/

Here’s a form you can fill out to get help with specific prescriptions. The RX connection….fill out the form http://therxconnection.com/

And…of course, there are always scams and the Federal trade commission is a good resource to make sure that the help you are offered is real.  http://tinyurl.com/lxwvfra

One more point and one more resource.  OTI is a donation/transplantation support group so we would be remiss if we didn’t offer you some resources specifically focused on just us. 

Financial Assistance for Living Donors and Transplant Recipients

The following organizations may be able to provide some financial or related assistance to transplant candidates, recipients, living donors and potential living donors.

 This list is provided as a guide only; individuals will need to contact these organizations to determine if help is available for their particular situation.  Donors and recipients should also ask their transplant center for assistance with financial issues.

 

Air Care Alliance

1515 East 71st Street, Suite 312

Tulsa, Oklahoma 74136

Office Phone and Help Line: (918) 745-0384

Toll Free Help Line

Number: (888) 260-9707

Email:

mail@aircareall.org

www.aircareall.org

 

The Air Care Alliance is a nationwide league of humanitarian flying organizations whose volunteer

pilots are dedicated to community service. Volunteer pilots perform public benefit flying for health care, patient transport, disaster relief, environmental support, and other missions of public service. Air Care Alliance listed groups may be able to provide free or low cost flights for medical evaluation and surgery for living donors and recipients. Please see the website for details.

 

American Kidney Fund

6110 Executive Blvd., Suite 1010

Rockville, MD 20852

Phone: (800) 638-8299

Email:

helpline@kidneyfund.org

www.akfinc.org

 

The American Kidney Fund provides limited grants to needy dialysis patients, kidney transplant recipients and living kidney donors to help cover the costs of health-related expenses, transportation and medication. They provide information and support for kidney donation and transplantation, as well as general education and information on kidney disease.

 

American Liver Foundation

75 Maiden Lane, Suite 603

New York, NY 10038-4810

Phone: (800) 465-4837,

(800) GOLIVER

Email:

webmail@liverfoundation.org

www.liverfoundation.org

 

The American Liver Foundation, a national voluntary health organization, has established a Transplant Fund to assist patients and families in fundraising efforts for liver transplantation. The Foundation acts as a trustee of funds raised on behalf of patients to help pay for medical care and associated transplantation expenses, which may include expenses related to a living liver donation.

 

American Organ Transplant Association

3335 Cartwright Road

Missouri City, TX 77459

Contact: Ellen Gordon Woodal

l, Executive Director

Phone: (281) 261-2682

Fax: (281) 499-2315

www.a-o-t-a.org

 

The American Organ Transplant Association is a private, non-profit group that provides free or reduced airfare and bus tickets to transplant recipients and their families. AOTA publishes a newsletter. Patients interested in AOTA’s services must be referred by their physician. The association also assists people with setting up trust funds and fund raising. No administrative fee is charged.

Angel Flight

American Medical Support Flight Team

P.O. Box 17467

Memphis, TN 38187-0467

1-877-858-7788 Toll Free

1-901-332-4034 Local

1-901-332-4036 Fax

www.angelflightamerica.org

 

Angel Flight provides free air transportation on private aircraft for needy people with healthcare problems and for healthcare agencies, organ procurement organizations, blood banks and tissue banks. No fees of any kind. Volunteers serving the public since 1983.

 

Children’s Organ Transplant Association

2501 COTA Drive

Bloomington, IN 47403

Phone: (800) 366-2682

Email:

cota@cota.org

www.cota.org

 

COTA is a national, non-profit agency that raises funds for individuals and families to assist with transplant, living donor, and related expenses. They work with some adults as well as children. All funds raised go to the individual; no administrative fees are collected.

 

Georgia Transplant Foundation

3125 Presidential Parkway

Suite 230

Atlanta, GA 30340

Phone: (770) 457-3796

Toll-Free: (866) 428-9411

Fax: (770) 457-7916

Contact them online at:

http://www.gatransplant.org/ContactUs.aspx

 

The mission of the Georgia Transplant Foundation is to help meet the needs of organ transplant candidates, living donors, recipients and their families by providing information and education regarding organ transplantation, granting financial assistance and being an advocate for sustaining and enriching lives every day. The Georgia Transplant Foundation supports the fundamental basis of altruism for living donation. The goal of the Living Donor Program is to provide assistance to living donors for financial hardships created as a result of their donation.  Either the living donor or the

transplant recipient must be a resident of Georgia. For more details, visit

http://www.gatransplant.org/FinancialAssistance/LivingDonor.aspx

 

.

National Living Donor Assistance Center (NLDAC)

2461 S. Clark St

reet, Suite 640

Arlington, VA 22202

Phone: 703.414.1600

Fax: 703.414.7874

Email:

NLDAC@livingdonorassistance.org

www.livingdonorassistance.org

 

If you know someone who is considering becoming a living organ donor (kidney, lung, liver) the National Living Donor Assistance Center (NLDAC) may be able to pay for up to $6,000 of the living donor’s (and his or her companion’s) travel and lodging expenses. The transplant center where the recipient is waiting will apply on the living donor’s behalf. Visit the NLDAC Web site at http://www.livingdonorassistance.org for more details and to read about general eligibility requirements and how the program works.

 

Help Hope Live

(formerly the National Transplant Assistance Fund )

150 N. Radnor Chester Rd.
Suite F-120
Radnor, PA 19087

Toll-free:

800.642.8399

Web:

http://www.helphopelive.org

Help Hope Live has over 20 years’ experience empowering people to raise money in their communities to cover uninsured medical expenses.

 

Nielsen Organ Transplant Foundation

580 W. 8th St.

Jacksonville, FL 32209

(904) 244-9823

Email:

nielsen@notf.org

www.notf.org

 

The Nielsen Organ Transplant Foundation provides financial assistance to pre- and post-transplant patients in the Northeast Florida area.

 

National Foundation for Transplants

1102 Brookfield Road

Suite 200

Memphis, TN 38119

Toll Free: (800) 489-3863

Local: (901) 684-1697

Fax: (901) 684-1128

E-mail:

info@transplants.org

www.transplants.org

 

The National Foundation for Transplants provides financial assistance & advocacy to transplant candidates and recipients with significant costs not covered by insurance.

 

Transplant Recipients International Organization, Inc.

2100 M Street, NW, #170-353

Washington, DC 20037-1233

Email:

info@trioweb.org

www.trioweb.org

 

The TRIO/United Airlines Travel Program Isa cooperative arrangement between TRIO and the United Airlines Charity Miles Program. It provides TRIO members and family members with cost-free air transportation when travel is transplant-related. Visit http://www.trioweb.org/resources/united.html for more information.

 

Bob’s Newheart encourages readers to comment on each of our blogs and to add resources that they find in their own searches. 

 

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 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.

Please view our new music video “Dawn Anita The Gift of Life” on YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs.  This video is free to anyone who wants to use it and no permission is needed. 

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.

En Espanol

Puede comentar en el espacio proporcionado o por correo electrónico sus pensamientos a mí en bob@baronson.org. Y – por favor, difundir la palabra acerca de la necesidad inmediata de más donantes de órganos. No hay nada que puedas hacer lo que es de mayor importancia. Si usted convence a una persona de ser donante de órganos y tejidos puede salvar o afectar positivamente a más de 60 vidas. Algunas de esas vidas pueden ser personas que conoces y amas.

Por favor, consulte nuestro nuevo video musical “Dawn Anita The Gift of Life” en https://www.youtube.com/watch?v=eYFFJoHJwHs YouTube. Este video es libre para cualquier persona que quiera usarlo y no se necesita permiso.

Si quieres correr la voz acerca de la donación de órganos personalmente, tenemos otra presentación de PowerPoint para su uso libre y sin permiso. Sólo tienes que ir a http://www.organti.org y haga clic en “Life Pass It On” en el lado izquierdo de la pantalla y luego sólo tienes que seguir las instrucciones. Esto no es un espectáculo independiente, sino que necesita un presentador pero es profesionalmente producida y sonido hechos. Si usted decide usar el programa le enviaré una copia gratuita de mi libro electrónico, “Cómo obtener un pie” O “que le ayudará con habilidades de presentación. Sólo tiene que escribir a bob@baronson.org y por lo general usted recibirá una copia del mismo día.

Además … hay más información sobre este sitio de blogs sobre otros donación / trasplante temas. Además nos encantaría que te unas a nuestro grupo de Facebook, la Iniciativa de Trasplante de Órganos Cuantos más miembros que obtenemos mayor será nuestra influencia con los tomadores de decisiones.

 

 

 

 

 

Critical Information On Managing Your Medications


Reprinted and reformatted from WikiHow

With Additions by Bob Aronson

Have you just started a new medicinal regimen that requires you to take pills every day? Remembering to take your medication every day can be a chore, but it is also very important for your health. If you’re forgetful or simply have too many medications to track, then maybe this guide can help you remember to get the job done.

Start using a calendar. You can purchase a paper calendar and hang it in your room and teach yourself to look at it every day, making and leaving notes accordingly. You can also search through free electronic calendars on the Internet or use calendar software that may have come with your computer. Some of these allow you to add notes and automatically send you reminders by email or by SMS (i.e. text messaging).

Set visual reminders.

  • Put the medication close to something you need to deal with on a daily basis anyway. For example, if you take your medication in the morning, make sure that before going to bed at night, you place it next to the coffee pot, if you make coffee in the morning. Or, you can attach your medication bottle or pill box to your toothbrush with Velcro.
  • Make it part of your routine. If you take it every morning, make it a habit to take it as soon as you step out of the shower, or as soon as you get out of bed.
  • You can purchase sticky notes to leave in your kitchen, your car, or anywhere that you frequently visit. For medication that is stored in the fridge, you should paste a post-it note on the fridge door (or on your coffee pot) that says Take Pills.
  • Remember medication that needs to be taken with a meal, by keeping it right on the table, in front of the place that you eat.
  • If you are on your computer often, you might create a text file on your desktop that contains a list of things that you need to do. You can search the Internet for “electronic” sticky notes that you can place directly on your desktop, rather than purchasing paper ones. These programs will often allow you to set timers and reminders directly to the notes to flash or emit sounds accordingly.
  • If you have a complex regimen, write a list with the medication, time and date and tape the list to the mirror in your bathroom. You can also print this on a grid and check off each medication after you take it.
  • Set an auditory reminder. This is a common and fairly effective way to remind yourself to take your medicine. Most cell phones have an alarm function that allows you to set a “daily” alarm time where it rings. Choose a tone that will remind you that you need to take your medicine. If you do not own a cell phone, you might set your alarm clock to go off at a particular time each day for the same effect. Another alternative is to buy a digital watch and set the alarm to go off as many times per day as you need to take medication. A small digital kitchen timer with a numeric keyboard can be useful. Be sure to get one that can be set for hours, not just minutes and seconds. As soon as the alarm goes off, immediately take your medication to reinforce the habit. Saying “Oh, I’ll do it in a few minutes” can lead to repeated forgetfulness and defeat the purpose of having an alarm.
  • Sort your medication. Place all your medications, including your daily dose of vitamins on your kitchen counter. As you take one pill, close the bottle, and place it to the left of the counter, making two piles. Do the same for each pill you take. Remember that the ones you need to take are in front of you. The ones you have already taken are to the left of you. After you are finished taking all your pills for the day, place all those on the left hand side back into the kitchen cabinet. Now you will know that all of your pills have been taken. Pre-sorting the pills into a plastic container designed for this purpose (a pill box or medicine box) is another way to avoid taking the same medication twice by accident. If that compartment is empty, you know you took the meds. Pill sorters come in different sizes and different colors. Aim to have enough to sort two weeks of meds at a time.
  • Adopt a “divide and conquer” strategy. In other words, take half of your medicine and keep it in a place other than your household, such as your office at work. If you happen to forget to take your medicine in the morning, you can easily access your medicine at work.
  • Be mindful of your medicine’s storing conditions, especially if you plan to keep your pills in your car’s glove box on a hot summer day.
  • Get another person to remind you. Have a friend or loved one to remind you to take your medicine, or to ask you if you remembered to take your medicine.

Tips

  • Use your phone calendar to set recurring reminders daily. It’s a more subtle way to be reminded. If you use your company phone/Outlook, make sure you mark the appointment as “private” and keep the reminder description generic to protect your privacy

Be careful when deciding on reminders. If you get too comfortable with them (such as a note on your fridge or by your pill box) you may be more likely to overlook it or ignore it.

  • Not all medication is available or legal in all countries so you should check ahead. Any medication that may have a controlled substance may not be allowed in some countries so make sure you bring your prescription bottle and if possible a photocopy of your physician’s prescription.
  • If you choose to set an alarm on your cell phone, be sure that it is a tone that you can easily associate with taking your medicine, so that you do not become too accustomed to hearing a soft tone. Or, if all else fails, set it to the same tone as your normal ring tone.
  • Remember to take your medication with you when you go on holiday. When you pack your toothbrush, pack the medications you take also.  IMPORTANT!  NEVER CHECK MEDICATION WITH YOUR BAGGAGE.  ALWAYS KEEP YOUR MEDS WITH YOU IN CASE YOUR BAGGAGE GETS LOST.
  • If on vacation, pack your original, pharmacy-labeled medication bottles or keep a detailed list in your purse or wallet.  I have attached a sample list to the end of this blog.
  • Your meds list should also include critical medical information like insurance, physicians and clinics, and medical conditions. If it happens that you need emergency medical care, this will help the care providers to quickly determine what medications you take and how and why you take them, should you not be able to remember them or not speak for yourself. It is difficult, time-consuming and sometimes impossible for health care providers to identify unlabeled pills. For the same reason, do not dump different medications into the same bottle.
  • Before you go on a long vacation, ask your doctor to give you an extra prescription for your pills, so that if you run out, lose them, or spill them, you can have the prescription filled at any drugstore.
  • If you are taking medication for a serious condition such as heart disease, wear a Medical Alert tag, necklace or bracelet listing the name(s) of your illness and the medications you use to treat it/each. Also list any potentially hazardous interactions and allergies.
  • If one or more of your medications causes photo sensitivity, be sure to put on sunscreen before leaving your house, no matter what it looks like outside; you’d be surprised how little light is required to get a full-blown sunburn!

Warnings

  • Be mindful of making a mental note to yourself when you take your medicine. Forgetting to take your medication is one thing, doubling your dosage because you forgot that you’d already taken your medication for today is another. You could make a box next to your “Remember Pills”-note, tick it off when you’ve taken it.
  • If you do forget to take a dose, read the instructions that come with your medication carefully. Don’t assume that you should take your dose anyway- although this is the case for most, it can be different for others. If you have trouble reading, ask the pharmacist to explain the dosage directions.
  • Before leaving the pharmacy, check to make sure that the pills in the bag are the pills that you use. Pharmacists make mistakes also.
  • When leaving your medicine bottles around to remind you to take them, be careful if you have children so you do not leave the pills in a easy spot for a child to grab.
  • Be aware that certain prescription medications have a high potential for addiction or abuse. If you find yourself taking more of a medication than prescribed, call your doctor immediately to talk about the change.
  • Some medications, such as those classed as controlled substances, may not be appropriate to leave around the house. Place them in a locked cabinet, box or drawer, and do not move them from one building to the next. Try to not let others know that you are on such medications and avoid taking them in public. It’s not uncommon for people to steal certain medications, either to abuse themselves or to sell to others with similar intent.
  • It’s a Federal offence to transfer a controlled substance to anyone other than the person to whom it was prescribed (you). If you do wind up victim of a theft, report it immediately to avoid potential prosecution.
  • Some medications have ‘black box warnings’. This means that when taken incorrectly, or by those with certain conditions, fatalities may arise. Place these and other such medications in a safe location and call your doctor right away if you think you might have accidentally taken more than prescribed.
  • Sometimes the pharmacist gives out a stranger’s prescriptions by accident, read the label carefully.

Sample Medical Info Sheet to Carry With You

HEART TRANSPLANT RECIPIENT

Best Hospital USA

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

Transplant Pulmonologist,  Dr. Breatheasy best clinic USA

Transplant Cardiologists, Dr. Heartthump best clinic USA

Transplant Coordinator:  Nurse Jane best clinic USA

Pharmacy: 

Primary:  Best Pharmacy USS

Secondary: Second best pharmacy USA

Health insurance:

Primary Medicare part A, Hospital, part B, Medical

Secondary, AARP Medicare Supplement .  

Medicare part D Prescriptions, AARP Medicare RxEnhanced

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

Blood Type: B Positive

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 1941
  • 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

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.

 

Not Enough Transplantable Organs, Thousands Die…Options for Change


There will come a time when organ/tissue/blood donors are no longer needed.  Advancements in mechanical devices, therapeutic cloning (duplication of organs not people) and regenerative methods will negate the need for human donation.  But, that’s not going to happen any time soon and until it does we are going to have a shortage that results in thousands of unnecessary deaths.

Twenty eight years ago, The National Organ Transplant Act (NOTA) was approved.  Sponsored by Democrat Representative Al Gore and Republican Senator Orin Hatch the act outlawed the sale of human organs and provided for the establishment of a volunteer (Altruistic) system of organ donation in the United States. NOTA  also authorized the Department of Health and Human Services (DHHS) to make grants for the planning and establishment of Organ Procurement Organizations (OPOs); and established the formation of the Organ Procurement and Transplantation Network (OPTN). 

That was 28 years ago.  Since then thousands of lives have been saved by organ transplants but the number of available organs has always, from the very beginning, lagged behind the number of people who need them.

As of right now there are 112,640 waiting list candidates but so far this year there have been only 23,745 transplants done and only 11,711 donors (data from UNOS, the United Network for Organ Sharing www.unos.org ). The numbers are really all the evidence we need to show that the altruistic system is not working.  Each year about 6,000 people die while waiting for a transplant.  Thousands of other Americans never even get on the list because of a lack of access to specialized care or because they can’t afford a transplant. 

While many find this to be an intolerable situation neither DHHS nor UNOS seem interested in making any change to the system.  From time to time they will assemble “Ethics” panels to study ways to augment or change it but the answer is always the same, “Unethical.” One can easily ask, “What is ethical about letting all these people die?  How can you possibly look at these numbers and say, “Presumed consent and/or some kind of compensation system for donors, is unethical?”  Surely something can be designed that will provide the needed number of organs and still be an ethical practice.

I recognize that the highly skilled, educated professionals who make these “Ethical” decisions are faced with a double edged sword 1) changing the system could produce negative publicity and affect their reputations and perhaps some funding and 2) the ethics of allowing people to die.  Given those conditions it still seems that allowing people to die is more unethical than making some well-considered changes that would harm no one and benefit many. And…the situation is only going to get worse because modern technology is allowing people to live longer which is adding to the list of people waiting for transplants.

Twenty eight years of letting people die.  About 168,000 people are gone because the Ivory tower thinkers refuse to or are afraid to make a change.  Had changes been made in the past many of the 168,000 casualties would be alive today and who knows what contributions they might have made to our society.   

As I noted in the first paragraph, in the long term we probably won’t need to have a donor system but it will be many years before any of those means become commonly practical.  So we’re stuck with the old question, “What do we do to narrow or eliminate the gap between available organs and those who need them?”

My research indicates that while there are not a plentitude of options to consider there are some and they include:

 

  1. 1.    Mandatory donation (anyone who dies is automatically a donor, no exceptions)
  2. 2.    The LifeSharers approach, (you can only receive an organ if you are a donor)
  3. 3.    Presumed consent (You are automatically a donor unless you opt out)
  4. 4.    Some sort of compensation plan for donors and/or their families.
  5. 5.    A combination of presumed consent and a payment system

 Let us tackle mandatory donation first.  On its surface it sounds harsh and like a product out of an HG wells book.  It is harsh and probably unacceptable because of its dictatorial overtones.  Americans don’t seem to like anything that is mandatory whether it is good for them or not, so mandatory donation is unlikely to receive enthusiastic support.

 Aaron Spital, and James Stacey Taylor (Department of Medicine, Mount Sinai School of Medicine, New York, New York; and Department of Philosophy, College of New Jersey, Ewing, New Jersey) have written a persuasive paper on the subject of mandatory organ donation. http://tinyurl.com/6wavm4b. Their proposal is simple:  

 ”We propose that the requirement for consent for cadaveric organ recovery be eliminated and that whenever a person dies with transplantable organs, these be recovered routinely. Consent for such recovery should be neither required nor sought.”   

The two researchers go on to say,

“We believe that the major problem with our present cadaveric organ procurement system is its absolute requirement for consent. As such, the system’s success depends on altruism and voluntarism. Unfortunately, this approach has proved to be inefficient. Despite tremendous efforts to increase public commitment to posthumous organ donation, exemplified most recently by the US Department of Health and Human Services sponsored Organ Donation Breakthrough Collaborative many families who are asked for permission to recover organs from a recently deceased relative still say no. The result is a tragic syllogism: nonconsent leads to nonprocurement of potentially life-saving organs, and nonprocurement limits the number of people who could have been saved through transplantation; therefore, nonconsent results in loss of life.”  

While it is difficult to disagree from a purely logical standpoint, emotions run high on issues like this and it is unlikely to get approval from the American Public.

The second option listed is the approach where registered donors would be offered organs first, regardless of how ill other patients on the list might be.  In the U.S. there is one organization, LifeSharers, that has promoted that idea for several years and while they have nearly 15,000 members (http://lifesharers.org/) they have had virtually no impact. In order for the concept to work, they would have to sign up just about every single American…that’s not likely to happen and as far as we know, no LifeSharers member has yet been a donor to another LifeSharers member.  To be fair, however, the nation of Israel has adopted a form of the LifeSharers program but it’s still too early to make any assessments on its success or acceptance. 

Most people who object to the “Donors” first concept say it is because it deviates from the practice of offering organs (provided there is a match) to the sickest patient first.  Their program would offer organs to members first and then if there was no match, the organ could go to the sickest person.  Many people object because despite our great national communication system, there are still millions of people who don’t understand the donation/transplantation process, haven’t heard about it, didn’t know you could register to be a donor or, because of a multitude of myths, think they can’t be donors. Despite the honorable efforts by LifeSharers founder Dave Undis, the concept is not being seriously considered by the U.S. transplant community.  Additionally LifeSharers growth has been slow indicating limited acceptance by the public.  You can learn more about LifeSharers at http://www.lifesharers.org/

The third option is presumed consent and if any option is ever approved in the United States or even some of the states, this will likely be the one. Currently under our altruistic program people “opt in” by signing a donor card and having “Donor’ placed on their driver’s license or other official state ID card. Presumed consent is the opposite.  It assumes that everybody wants to be a donor and so you would “Opt out” if you don’t want to be a donor and likely would carry a card that says “Not a donor.”  You can learn more about presumed consent at http://tinyurl.com/7mcjoez.

In countries where presumed consent is in effect, (Austria, Spain, Portugal, Italy, Belgium, Bulgaria, France, Luxembourg, Norway, Denmark, Finland, Sweden, Switzerland, Latvia, Czech Republic, Slovak Republic, Hungary, Slovenia, Poland, Greece, and Singapore) the opt out rate has been around 2% which means that 98% of the eligible population would be organ donors as opposed to under 50% in the United States where we have the opt In program. That’s a big difference.  The great leveler, however, may be that the countries with opt out as their system still ask family members, at the time of the donors death, for their approval. If they refuse the organ is not recovered. 

The most politically sensitive of all the issues is the outright sale of organs.   At this point I know of no serious effort in the U.S. that would change our laws to allow a person to sell his/her organs on the open market.  It is not realistic to think that any U.S. regulatory or government agency would even consider the idea.  Strangely, In Iran of all places, it is legal to sell organs and a healthy kidney retails for about $6,000.

Iran legalized living non-related donation (LNRD) of kidneys in 1988.  The Iranian government regulates and funds the donation/transplantation process and compensates donors for their organs. A third-party group arranges contact between donors and recipients (much like U.S. Organ Procurement Organizations (OPOs). In addition to payment from the government, donors receive free health insurance.  The transplant recipient benefits from highly subsidized immunosuppression support. Iranian law also provides for charitable organizations to pay the cost of transplants for people who can’t afford them.  Here’s an interesting twist, though.  It is illegal for the medical teams or any ‘middleman’ like our OPOs to receive payment.  Within a year of being implemented the number of transplants in Iran almost doubled.

 They system seems to be working in Iran and it certainly could work here…it isn’t as though we aren’t selling things similar to organs.  Currently in the United States it is legal to sell yourself to become a surrogate mother and everyday people are paid for sperm, eggs and hair so why not organs.  The Iran concept is certainly an option but polls continually indicate it is not a very popular one.

 There are some variations on the “Payment” theme that might be attractive to the American people.   We could consider a system that “compensates” rather than pays donors or their families.  For example, a living kidney donor does not have to pay for the surgery to remove the donated kidney nor does that person have to pay for any of the medical care surrounding the operation those costs are absorbed by the recipients insurance coverage.  The donor’s, though, often accrue other expenses like travel to the city in which the recipient lives, lodging, food and time away from work, which could be significant especially if there are any surgical complications.  A very good case could be made for compensation for these expenses.

There are other considerations as well. Dr. Sally Satel a Psychiatrist and a kidney transplant recipient who is also a resident scholar at the American Enterprise Institute has written and spoken extensively on the subject of compensation, “The solution to this lethal paternalism, as I and others have argued, is not to create a direct exchange of cash for kidneys, but for Congress to let donors accept a carefully devised and regulated government benefit — perhaps a tax credit, a contribution to a retirement plan or early access to Medicare.” 

It would not be a huge stretch to extend Dr. Satel’s ideas to families of deceased donors while also covering funeral expenses even providing some help with college tuition for their children, subsidized prescriptions or even subsidized health care insurance. You can read more on Dr. Satel’s thoughts by going to http://tinyurl.com/yabluu3 .

The final option that could be considered is a combination of presumed consent and a form of compensation that follows the lines described by Dr.Satel. 

The point of this blog is to just get people thinking.  The present system isn’t doing the job and never will despite heroic efforts at increasing organ donation, there just aren’t enough donors.  That we must change if we are to stop the dying, is a given.  Determining what that change should be is what is so incredibly difficult. 

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Consider what I’ve written, discuss it with friends, join discussions on Facebook’s Organ Transplant Initiative and comment in the space provided here.  When you have decided what you think is the best solution, you should contact your elected representative or U.S. Senator and let them know your feelings.  Change has to begin somewhere, why not with you?

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 two brand new 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.

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