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Got Chronic Pain? The Feds Say You’re a Lying, Addict and Don’t Need Opioids

***Bob Aronson is a 2007 heart transplant recipient. He has also suffered from Chronic pain for several years and doepends on opioids to provide some comfort. He has tried several alternatives, some have been beneficial but he still needs opioids in order to live a somewhat normal life. 

opioid epidemicYes, there is an opioid crisis. Yes, the number of deaths from opioid overdoses is a tragedy, and yes, something must be done to stop the addiction and the dying, but denying pain relief to legitimate chronic pain sufferers is not the way to do it.  There are millions of Americans who suffer daily from chronic pain and need the relief provided by opioids. Everyone is subject to becoming a chronic pain sufferer including transplant recipients.

I have always thought the federal government approach to stopping the opioid addiction/overdose/death epidemic was wrong-headed, but I also thought that the denial of pain relief to legitimate chronic pain patients was accidental, a result of overzealous federal agencies.  I thought that if we protested they would see the light and make the appropriate changes. I’ve never been so wrong. The Federal Government didn’t mistakenly create a problem for chronic pain patients, THEY DID IT ON PURPOSE. WE ARE NOT ACCIDENTAL VICTIMS, WE ARE THE TARGETED GROUP AND WE MUST FIGHT BACK.

Lest you think my claim is just the paranoia of a crazed junkie, let me offer proof in two forms; one personal the other by exposing government policy. First a quick personal experience. I have osteoarthritis and some pinched nerves. The proof of that claim can be seen on my MRIs.

My primary doc has often commented about the pressure applied by the feds to get him to stop prescribing opioids. He suggested I go to a pain clinic where the physicians are pain specialists and allowed more leeway, but even they are closely monitored by the drug cops. The clinic prescribed 15 milligrams of Oxycontin twice a day and 10 milligrams of Hydrocodone once a day for breakthrough pain. That was the regimen for quite some time and while not totally controlled, the pain was manageable. At the same time I was getting steroid injections in my neck and back as alternatives to more opioids. Then, one day without warning the pain doc said they could no longer offer the Hydrocodone. They said that the best they could do for breakthrough pain was Tylenol 4 which contains codeine, a totally ineffective drug for my condition and much less powerful than the Hydrocodone. Now, my pain is not under control but the doc says this is the best he can do under current federal guidelines. I expect that soon I will hear that Oxycontin is no longer available.

The federal agencies involve;d in the opioids issue seem to think that anyone who takes any narcotic pain reliever is an addict, their policies ignore evidence to the contrary. For example; I have never shown signs of addiction, I have never asked for an increase in milligrams or for stronger drugs,  I have never Doctor shopped, and have always passed the random urine tests they give and when I go to the pain clinic I always have the correct number of pills left in the containers. So, why was I denied relief? Because the feds blanket policy wants all opioids use stopped regardless of who is hurt in the process. Not only that, but if you read on you will quickly see that the feds believe that chronic pain patients are liars and addicts and have therefore Targeted us. Then, they turned the torture screws even tighter by specifically targeting Medicare Part D patients. Those are the people who have prescription coverage under Medicare. What follows goes far beyond personal experience, it exposes a broad government policy that targets those who legitimately need the pain relief offered by opioids.

On April 2,martin luther king 2018, CMS (Centers for Medicare and Medicaid Services) issued updated regulations for Medicare Advantage Plans (MAP) and Medicare Part D programs. The focus of the updates is to provide additional guidelines and tools to target the nation’s growing opioid epidemic. I should note that most, perhaps 90 percent of those affected are older Americans. The Government has targeted chronic pain patients many of whom are senior citizens. Here’s proof. CDC’s Guideline for Prescribing Opioids for chronic pain makes it clear that pain patients should be using alternative therapies that do not include narcotics regardless of the level of pain and effectiveness of the alternative treatment. The Guidelines ignore the fact that many patients cannot afford alternatives, are disabled and unable to get to alternative therapy and that many are uninsured and cannot afford it.  As I did the research, I could not believe what I found, but here’s more of the story.

These new regulations expand Medicare’s ability to identify medication misuse and establish controls at the pharmacy. Already some pharmacies are limiting opioid prescriptions to a 3 or 7-day supply. They are doing it arbitrarily as a blanket program, totally ignoring individual patient histories and medical conditions. Why? Because they believe it is good public relations. This is a business decision, not one to benefit patients. They think their tough stance on opioids will bring them more respect, more customers and greater profits. They are using our misery to make more money. They are gambling that most Americans will praise them for their efforts, when in fact they should be soundly condemned and shamed. The 3 or 7-day prescription limit means the patient with chronic pain will have to see a physician every three or seven days to get a refill prescription (Narcotic prescriptions never allow refills and in most cases cannot be called or faxed in to the Pharmacy.. The Patient must posses the prescription and physically hand it to the pharmacist. At the same time, he or she will also be asked for ID).  Everyone knows that it is nearly impossible to get a doctor’s appointment  every three to seven days, so it is obvious that pharmacies like CVS and Walmart in their quest to be more profitable have joined the Government in calling chronic pain sufferers liars and addicts.

customer serviceAlways remember, these are business decisions. They are made to determine the effect on the business, not for the betterment of humankind. When corporate executives or their boards of directors make decisions like these, their first concern is the bottom line. They do not make decisions based on what’s right or what’s compassionate. When things like 3-day prescriptions are proposed, the first question asked is, “How will that affect the bottom line?” If the answer is negative, acceptance is very unlikely. Don’t be fooled by their advertising or PR efforts. If an effort can’t make money, they don’t do it and, if  they decide to do it and it fails to make money they will quietly withdraw it.

The same is true of Insurance companies. From January 1, 2019 on, those companies that offer Part D plans will have the authority to arbitrarily establish drug management programs for patients they believe are at risk of abusing medications (a good excuse to quit paying for certain drugs, an action that will increase insurance company profitability). They can then determine misuse without ever talking to the patient. That means insurance companies can designate an individual as “at risk” and limit the patient’s access to their list of frequently abused drugs with no patient or physician input. (CDC guidelines for prescribing opioids)

You can be assured that if Insurance companies see that disallowing Part D payments forinsurance card pain-relieving drugs will strengthen their bottom line, they will do it. This war on opioids then becomes a profit center for Part D. Insurance companies. CMS (Centers for Medicare and Medicaid Services) says it will designate all opioids, except Buprenorphine (a drug used to treat opioid dependence) and Benzodiazepines (an addictive drug used to treat anxiety, nervousness, panic disorders, muscle spasms, seizures, and more). Benzos will also be designated as a frequently abused drugs but will be excluded from the new guidelines, for a while). You can read more here — CMS proposes Part D Opioid Limits, Pharmacy reacts.

There are an estimated 25 million Americans that suffer from Chronic pain, and this new attack will only make the suffering worse. Read what follows, and you’ll have the full story.

The U.S. Government’s war on opioids is led by the DEA (Drug Enforcement prescriptions opioidsAdministration), the FDA (Food and Drug Administration) and the CDC (Centers for Disease Control). CDC reports that opioids were involved in 42,249 deaths in 2016, and opioid overdose deaths were five times higher in 2016 than 1 999.

I do not doubt that there is a crisis of major proportions and that something must be done to stop the abuse of these drugs and the mounting death toll. The government approach, though, is over-broad, arbitrary and just plain wrong. They would make opiates unavailable to everyone. That goal fails to recognize that millions of chronic pain sufferers legitimately need to use opioids, and to take them off the market will cause irreparable physical and mental health damage. The government insists there are alternatives to opiates; they ignore the fact that the alternatives don’t work on everyone, that some patients can’t afford them because insurance does not cover them and that many patients are uninsured. The Government program is more likely to force chronic pain sufferers into the street to buy cheaper illegal drugs than to alternative programs that only extend the pain.

Among the targets of the above-mentioned federal agencies are 1) the companies thatdrug companies make opioids, 2) the physicians who prescribe them, 3) the pharmacies that fill the prescriptions and 4) the patients who need them. CDC says that each year, over 200 million opioid prescriptions are written and filled in the United States. In 2012 the number of prescriptions peaked at 255 million. No doubt, that’s a hell of a lot of opioid prescriptions, and the number raises the question, “How many of them are really necessary for pain control and how many do nothing more than satisfy an addiction?” That’s the question the Feds should be asking. Instead, they are acting as though they have the answer and it is, “All of those prescriptions are life-threatening, especially those written for patients who claim to have chronic pain.” Patients, on the other hand, are getting this message, “All of you so-called chronic pain sufferers are liars. You don’t need opioids.”

The feds message to the medical profession is, “We’remedicalicense watching you and want you to know that we strongly discourage prescribing opioids for repeat patients. If you continue to do that you are placing your license at risk.”” So, who is a repeat patient? That’s me and thousands if not millions like me who must see a physician each month to get a new opioid prescription. There is far less pressure on docs who write a scrip for one or two-time use. That’s someone who broke an arm, and in a few weeks, the pain is gone on its own as opposed to Chronic Pain patients who need on-going relief.

The issue that the feds refuse to address is this; while you are seeking out and trying the alternatives, how do you control the pain? Several pain management specialists have told me that to determine which alternative will work, you must quit using opioids and it may take months to find one that works, or you may never find it. All that time you are experiencing pain so intense as to cause you to have suicidal thoughts or at least thoughts of how death would provide relief. When pain is so bad, it prevents you from doing anything, even those things you used to love, and the feds don’t allow any relief, they are violating this age-old admonition, “First, do no harm.”

As a chronic pain sufferer, I would much prefer to get pain relief from something other than a narcotic. I don’t like the feeling I get from using the drugs. As an intelligent, functioning human being, I much prefer a clear head to one muddled by narcotics. While I am nearly 80 years old, narcotics allow me to be a functioning, productive member of society. I do woodwork, write blogs, just published a science fiction book, engage in discussions in the social media and do the grocery shopping and even some cooking. Without opioid relief I would be reduced to a weeping, grumpy old man who is unable to do anything for himself.

Most politicians are on the anti-opioid bandwagon, they don’t know about chronic pain so we have to tell them. we have to be isiIbecause they’ve only heard a small part of the story. Now it is time to tell our story because if we don’t’ all of us may exit this world in excruciating pain. This time we can’t wait for someone else to fix the problem, we must fix it ourselves by telling our stories to those who can stop this nonsense. Here are some addresses you can write to or call.

House of representatives members and contact info.

U.S. Senate members and contact info.

CMS Contact info

DEA contact info

FDA contact information.

The White House contact information.

American Pharmacists Association contact information.

Finally, be in touch with your local media. Suggest stories on chronic pain with this angle, “The feds, physicians, and pharmacies, aren’t telling the whole story. Here’s the chronic pain patient’s perspective.”

Only you can change this wrong-headed, harmful approach to ending addiction to opioids. Tell your story, let the bureaucrats and elected officials know your feelings and your suffering. There are 25 million of us, if we all act, we will be a force that cannot be ignored.





From Farm to Fork — How Safe Is Our Food?

Food safety cartoonThe very food that we need to help us grow and live, could also cause us to become ill and die.   Food — we cannot live without it, but it can pose great danger.   Let’s look at cold hard reality.  Our food supply, our food storage systems and our cooking and eating habits may be responsible for a great deal of misery.  The Centers for Disease Control (CDC) estimates that contaminated food sickens approximately 76 million Americans, leading to some 325,000 hospitalizations and 5,000 deaths in the U.S. each year.

Food safety is particularly important to anyone with a take proactive measurescompromised immune system because we just don’t have the ability to fight infections whether they are bacterial or viral.  Certainly people who have had organ transplants fall into that category.  Transplant recipients must be especially careful.

As I started to research this posting the first question that popped into my mind was, “Which foods are most likely to make me sick. I found this list of the top ten from the Center for Science in the Public Interest as reprinted in the Fiscal Times

1) Leafy Greensleafy greens

Lettuce and spinach may be on the top of most nutritionists’ lists, but they’re also among the foods most linked to outbreaks of illness. The contaminations often starts at the farm through contact with wild animals or manure.

*Source: The Center for Science in the Public Interest

– See more at:

2) Eggs

The risk for salmonella makes eggs the second-most popular source of food-based illnesses. Consumers can protect themselves by fully cooking all eggs and eating or storing eggs promptly after cooking.

3) Tuna

tunaIf not properly stored immediately after being caught, tuna begins to decay and can release scrombotoxin, which can cause food poisoning.

4) Oysters

Raw or undercooked oysters can breed vibrio bacteria, which can cause mild food poisoning in healthy individuals and life-threatening illness among those with a weakened immune system. Best practices in preparing oysters is to discard any open shells before cooking, and any shells that didn’t open while cooking.

5) Potatoes

Baked potatoes become breeding grounds for botulism when they’re wrapped in foil and left out to cool too long. Unwrap potatoes after baking them, and store them in a cool, dark place before cooking.

6) Cheesecheese

Sticking with pasteurized cheese greatly reduces the risk of bacteria, but some soft cheeses—even those made with pasteurized cheese—are vulnerable to contamination during the cheese-making process.

7) Ice Cream

Everyone may scream for this summer treat, but when it’s made with undercooked eggs the cold stuff can become dangerous. Even store-bought ice cream can breed bacteria when it’s put back in the freezer after unfreezing.

8) Tomatoes

Salmonella can contaminate tomatoes on the farm via the roots, flowers or cracks in the skin. If an infected tomato is eaten raw, it has a high risk of infecting the person who consumers it.

9) Sprouts

utsThe humid settings ideal for cultivating sprouts are also model conditions for salmonella, listeria and E. Coli. The U.S. Department of Health and Human Services recommends that children, the elderly, pregnant women, and those with a weakened immune systems should avoid eating sprouts all together.

10) Berries

Strawberries, blackberries, and blueberries have been linked to a number of food-borne illness outbreaks in recent year. Last summer, a hepatitis A outbreak the sickened 150 people was traced back to frozen organic berries.

The Importance of Temperature

thermometerInadequate food temperature control is the most common factor contributing to food borne illness. Disease causing bacteria grow particularly well in foods high in protein such as meats, poultry, seafood, eggs, dairy products, cooked vegetables such as beans, and cooked cereal grains such as rice. Because of the high potential for rapid bacterial growth in these foods they are known as “potentially hazardous foods.”

Temperature Danger Zone

The temperature range at which bacteria grow best in potentially hazardous foods is between 41F. and 140F. The goal of all temperature controls is to either keep foods entirely out of this “danger zone” or to pass foods through this “danger zone” as quickly as possible.

So now you know which foods may pose the greatest threat to your health, but there are other factors that should concern us as well.  For example:

America’s food safety system has not been fundamentally modernized in more than 100 years.

Twenty states and D.C. did not meet or exceed the national average rate for being able to identify the pathogens responsible for foodborne disease outbreaks in their states.

Ensuring the public can quickly and safely receive medications during a major health emergency is one of the most serious challenges facing public health officials.  Sixteen states have purchased less than half of their share of federally-subsidized antivirals to use during a pandemic flu outbreak.

The main culprits are familiar. They include:

  • lmonellaSalmonella, bacteria that cause over 1.5 million illnesses per year. These commonly reside in uncooked poultry and eggs. Recent outbreaks have been linked to peanut butter, alfalfa sprouts and tomatoes.
  • E. coli 0157:H7, a dangerous bacterial strain that can cause kidney failure, turns up disproportionately in ground beef. Lately it’s been linked to spinach and pre-made cookie dough. (For a complete list, see the full report, which details also the geographical distribution of food-borne illnesses in the U.S.) You can read and learn more here

There are three types of hazards in a food manufacturing process: physical, chemical and biological. Foreign objects are the most obvious evidence of a contaminated product and are therefore most likely to be reported by production or by consumer complaints. However, they are also less likely than chemical or biological contaminants to affect large numbers of people.

Attributing illness to foods is a challenge for several reasons.  There are thousands of different foods, and we eat many varieties prepared in different ways, even in a single meal.  For the vast majority of foodborne illnesses, we simply don’t know which food is responsible for an illness.

One way to develop a fairly accurate estimate is to use  data collected during investigations of a food illness outbreak.   These investigations provide direct links between foodborne illnesses and which foods are responsible for them.

According to the National Institute of Allergies and Infectious Diseases, there are more than 250 known foodborne diseases. They can be caused by bacteria, viruses, or parasites. Natural and manufactured chemicals in food products also can make people sick. Some diseases are caused by toxins or poisons from the disease-causing microbe or germ, others are caused by your body’s reaction to the germ.

foodborne diseaseTypes of Foodborne Diseases as supplied by the National Institutes of Health (click on each one for details including symptoms and treatment or click this link for the NIH website

Botulism, Campylobacteriosis, E. coli, Hepatitis A, Norovirus Infection, Salmonellosis, Shigellosis, Prevention

So how do you avoid these unpronounceable diseases?  Besides the information provided on the links to each disease, you might also want to make note of the following helpful suggestions

No matter how busy you are, from top to bottom, a clean kitchen is a main line of defense for your family and the prevention of food poisoning.  You simply must eliminate the breeding grounds for dangerous bacteria.

  •  Wash your hands often – front and back, between fingers, under fingernails – in warm soapy water for at least 20 seconds (or two choruses of “Happy Birthday”) before and after every step in preparing or eating foods. That includes your kitchen helpers, such as children.
  • Clean all work surfaces often to remove food particles and spills. Use hot, soapy water. Keep nonfood items – mail, newspapers, purses – off counters and away from food and utensils. Wash the counter carefully before and after food preparation.
  • wash dishesWash dishes and cookware in the dishwasher or in hot, soapy water, and always rinse them well. Remember that chipped plates and china can collect bacteria.
  • Change towels and dishcloths often and wash them in the hot cycle of your washing machine. Allow them to dry out between each use. If they are damp, they’re the perfect breeding ground for bacteria.
  • Throw out dirty sponges or sterilize them by rinsing the sponge and microwaving it for about two minutes while still wet. Be careful, the sponge will be hot.

Pay close attention to the refrigerator and the freezer – shelves, sides and door – where foods are stored. Pack perishables in coolers while you clean or defrost your refrigerator or freezer.

Splatters inside your microwave can also collect bacteria, so keep it clean.

Physical Hazards

We’ve talked a lot about diseases and illnesses but our health is also subject to physical hazards.  You can view a University of Nebraska Slide show on the subject here:

What is a physical hazard?

We’ve all heard the stories about Rocks, insects and other things showing up in soda and beer cans.  While those instances are rare, they still happen.  Any extraneous object or foreign matter in food which may cause illness or injury to a person consuming the product is a physical hazard. These objects include bone or bone chips, metal flakes or fragments, injection needles, BB’s or shotgun pellets, pieces of product packaging, stones, glass or wood fragments, insects, personal items, or any other foreign matter not normally found in food.

The 8 most common food categories implicated in reported foreign object complaints are bakery products, soft drinks, vegetables, infant’s foods, fruits, cereals, fishery products and chocolate and cocoa products.  Below you will find a list of hazards, their effect and the treatment.  You can find more detailed information by clicking on this link

These materials have been found in food and can cause severe trauma, bleeding, cuts and even death.  In many cases surgery is required to correct the damage caused by; Glass, wood, stones, bullets, BBs, needles, jewelry, metal, .Insects and other contaminated material, building materials, bone, plastic and personal effects

As with any topic it is sometimes difficult to separate fact from fiction.  There are so many rumors, old Wives tales and myths people often think they are doing the right thing when in fact they may be making matters worse.  We can’t dispel all the rumors, but we can address a few.

Food Safety Myths Exposed

We all do our best to serve our families food that’s safe and healthy, but some common myths about food safety might surprise you.

MYTH: Food poisoning isn’t that big of a deal. I just have to tough it out for a day or two and then it’s over.

FACT: Many people don’t know it, but some foodborne illnesses can actually lead to long-term health conditions, and 5,000 insectAmericans a year die from foodborne illness. Get the FACTs on long-term effects of food poisoning.

MYTH: It’s OK to thaw meat on the counter. Since it starts out frozen, bacteria isn’t really a problem.

FACT: Actually, bacteria grow surprisingly rapidly at room temperatures, so the counter is never a place you should thaw foods. Instead, thaw foods the right way.

MYTH When cleaning my kitchen, the more bleach I use, the better. More bleach kills more bacteria, so it’s safer for my family.

FACT: There is actually no advantage to using more bleach than needed. To clean kitchen surfaces effectively, use just one teaspoon of liquid, unscented bleach to one quart of water.

MYTH I don’t need to wash fruits or vegetables if I’m going to peel them.

FACT: Because it’s easy to transfer bacteria from the peel or rind you’re cutting to the inside of your fruits and veggies, it’simportant to wash all produce, even if you plan to peel it.

poultryMYTH: To get rid of any bacteria on my meat, poultry, or seafood, I should rinse off the juices with water first.

FACT: Actually, rinsing meat, poultry, or seafood with water can increase your chance of food poisoning by splashing juices (and any bacteria they might contain) onto your sink and counters. The best way to cook meat, poultry, or seafood safely is tomake sure you cook it to the right temperature.

MYTH: The only reason to let food sit after it’s been microwaved is to make sure you don’t burn yourself on food that’s too hot.

FACT: In FACT, letting microwaved food sit for a few minutes (“standing time”) helps your food cook more completely by allowing colder areas of food time to absorb heat from hotter areas of food.

MYTH: Leftovers are safe to eat until they smell bad.

FACT: The kinds of bacteria that cause food poisoning do not affect the look, smell, or taste of food. To be safe, use our Safe Storage Times chart to make sure you know the right time to throw food out.

MYTH: Once food has been cooked, all the bacteria have been killed, so I don’t need to worry once it’s “done.”

FACT: Actually, the possibility of bacterial growth actually increases after cooking, because the drop in temperature allows bacteria to thrive. This is why keeping cooked food warmed to the right temperature is critical for food safety.

MYTH: Marinades are acidic, which kills bacteria—so it’s OK to marinate foods on the counter.

FACT: Even in the presence of acidic marinade, bacteria can grow very rapidly at room temperatures. To marinate foods safely, it’s important to marinate them in the refrigerator.

MYTH: If I really want my produce to be safe, I should wash fruits and veggies with soap or detergent before I use them.

FACT: In FACT, it’s best not to use soaps or detergents on produce, since these products can linger on foods and are not safe for consumption. Using clean running water is actually the

cookie doughMYTH: Only kids eat raw cookie dough and cake batter. If we just keep kids away from the raw products when adults are baking, there won’t be a problem!

FACT: Just a lick can make you sick!
No one of any age should eat raw cookie dough or cake batter because it could contain germs that cause illness. Whether it’s pre-packaged or homemade, the heat from baking is required to kill germs that might be in the raw ingredients. The finished, baked, product is far safer – and tastes even better! So don’t do it! And remember, kids who eat raw cookie dough and cake batter are at greater risk of getting food poisoning than most adults are.

MYTH: When kids cook it is usually “heat and eat” snacks and foods in the microwave. They don’t have to worry about food safety – the microwaves kill the germs!

FACT: Microwaves aren’t magic!
It’s the heat the microwaves generate that kills the germs! Food cooked in a microwave needs to be heated to a safe internal temperature. Microwaves often heat food unevenly, leaving cold spots in food where germs can survive. Kids can use microwaves properly by carefully following package instructions. Even simple “heat and eat” snacks come with instructions that need to be followed to ensure a safe product. Use a food thermometer if the instructions tell you to!

MYTH: When kids wash their hands, just putting their hands under running water is enough to get the germs off.

How to wash handsFACT: Rubbing hands with water and soap is the best way to go!
Water is just part of what you need for clean hands! Washing hands properly is a great way to reduce the risk of food poisoning. Here’s how: Wet your hands with clean, running water and apply soap. Rub them together to make a lather and scrub them well; be sure to scrub the backs of hands, between fingers, and under nails. Continue rubbing for at least 20 seconds. Sing the “Happy Birthday” song twice to time yourself! Rinse hands well under running water. Dry your hands using a clean towel, paper towel, or an air dryer.

MYTH: My kids only eat pre-packaged fruits and veggies for snacks because those snacks don’t need to be washed before they eat them.

FACT: Read your way to food safety!
Giving your kids healthy snacks is a big plus for them! But just because produce is wrapped, it doesn’t always mean it’s ready to eat as is. Read the label of your product to make sure it is says: “ready-to-eat,” “washed,” or “triple washed.” If it does, you’re good to go! If it doesn’t, wash your hands and then rinse the fruits or vegetables under running tap water. Scrub firm items, such as melons and cucumbers, with a clean produce brush. Dry with a clean cloth towel or paper towel to further reduce germs that may be present.

While federal, state and local agencies provide a valuable service with their contributions to our food safety, the primary responsibility is yours.  Too many of us become too careless with our food preparation and storage procedures and each of us needs to pay far more attention to the cleanliness of the areas in which we prepare food and to the cleanliness of the food itself.


bob minus Jay full shotBob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 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  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  It only takes a few minutes.

UNOS CEO: Study Could Redefine “Medically Suitable” Donors

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

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

August 11,2012

Walter Graham

Chief Executive Officer

United Network For Organ Sharing

Richmond, Virginia

Dear Mr. Graham:

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

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

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

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

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

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

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

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

Thank you for your consideration and time

Bob Aronson

Return letter from Walter Graham

Received on August 22, 2012

Dear Bob:

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

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

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

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

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

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

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

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

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

Walter Graham


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 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 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 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 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.

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