Scarcity of Kidneys: A Physician Making a Child Ineligible for A Kidney Transplant because of "Mental Retardation"

Read this mother's heart wrenching story here of how a transplant physician at the Nephrology Department at Children’s Hospital of Philadelphia has reportedly denied a little 3 YO girl with a rare genetic disorder the chance of getting a kidney transplant because she is "mentally retarded."
Here is a partial transcript of the emotionally charged conversation according to the mother's account:
(Start Transcript)
[Mom]“So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!”

[Transcript Surgeon] “Yes. This is hard for me, you know.”
(End Transcript)

Nobody should pretend to be omniscient, or to "play God", and certainly, nobody should revel in "playing God."
While I certainly understand the mother's position, I can see the physician's position although I vehemently disagree with it. I hope to write an extensive post on why I feel this way.
But, the mother reports she offers to find a live donor.

[Mom]“Oh, that’s ok! We plan on donating. If we aren’t a match, we come from a large family and someone will donate. We don’t want to be on the list. We will find our own donor.”

[Doctor] “Noooo. She—is—not—eligible –because—of—her—quality– of –life—Because—of—her—mental—delays”
If the family finds a live donor match from their family, surgeons are able to implant even an adult kidney into a child's body by implanting the kidney into a different part of the child's abdomen. (See here to read about cutting edge research being done at Stanford's Lucile Packard Children's Hospital where they have pioneered a method to keep adult kidneys alive even in small children where blood tends to pool and clot in the relatively large kidney causing the organ to stop functioning.)

Assuming the family is able to obtain its own donor, the transplant surgeon should keep his opinion completely to himself... the family is not getting involved with the transplant waiting list so he should not "play God" and pretend to be omniscient...he should allow the parents of this little girl to do everything they want to keep their child alive.

Morality: Is it Moral to Outlaw the Exchange of Money to Obtain a Kidney Transplant?

The bottom line is this: While some may argue it is immoral to buy and sell organs, I argue it is much more immoral to cause people who would otherwise be alive to be dead because less organs are available to the market. Let's keep more people living and reform the market for organs. A well regulated market will allow people to buy and sell organs and thus increase the supply of organs available and help everyone....because for every organ that a richer person bought, a poorer person will now have access to one more organ that is now available to the market.
Sometimes, the most moral decision is made not because it is not without any moral ambiguity or taint, but rather because it is the best option among many bad options.

Case and Point: The U.S. and the U.K.'s treating the evil Stalin as an ally in order to defeat an even greater evil, Hitler, in order to save Europe (and possibly the world) and defeat Nazi Germany.

But, clearly, to destroy Hitler, morality dictated we cut a deal with Stalin to carve up post-war Europe in order to saving the world from Hitler's ambitions of a 1,000 year rule where he would purify the world from everyone except those of the Aryan-race.

When Al Gore and Orrin Hatch promoted the passage of the National Organ Transplant Act of 1984 (NOTA), its purpose was "[t]o address the nation's critical organ donation shortage and improve the organ matching and placement process." See here.
It also outlawed the buying and selling of organs for transplantation.

This piece of legislation constantly causes the death of people who are unable to receive an organ for transplantation before they die.

The are not a finite number of organs available for transplantation in the U.S. that we have already reached. Putting aside deceased donor donations, there is plenty of room for live donors to supply many kidneys to people on the waiting list and thus alleviate the shortage to some extent. If we rely on altruism alone, a certain quantity of kidneys will be supplied to the market. If live donors could be compensated for their very valuable donation (dialysis for people with kidney failure can easily cost $70,000 per year and Medicare [AKA the taxpayers] covers all people with ESRD regardless of age) then the quantity of kidneys supplied to the market would increase and the shortage can be decreased or possibly even be wiped out. See an old post here where I discuss a possible government policy where live donors are given a $50,000 tax refund for their kidney.

NOTA must be reformed to save lives!!!

Covering Anti-Rejection Drugs for Kidney Transplant Patients: What is being Done?

A young women was lucky enough to receive a kidney transplant only to have the kidney stop functioning after the government stopped paying for the anti-rejection meds 3 years after surgery, which is Medicare policy. Read Jeannette Castaneda heart breaking tale of of how her transplanted kidney stopped functioning after she could no longer afford her anti-rejection meds here. Basically, Medicare is willing to pay ~$100,000 for a transplant or ~$70,000 per year for dialysis but it won't pay ~$17,000 per year for anti-rejection drugs to keep the organ alive after 3 years. Once the organ fails and the person again is SUFFERING from ESRD, Medicare is happy to again pay for another transplant or diaysis. Make sense???!!!
After an organ transplant, patients need to take immunosuppressive (AKA ant-rejection) medicine for the rest of their lives to lower the probability of the body rejecting the transplanted organ. This leads to increased life expectancy for both the organ and the person.
Medicare covers dialysis or kidney transplantation for people with ESRD but stops covering the anti-rejection medicine 3 years after a person obtains a transplant.
Because of the expense of these drugs, people some time stop taking their medicine and the transplanted kidney stops functioning at an acceptable level and the person is again suffering from ESRD and needs another transplant or needs to go onto dialysis.
I wrote about this phenomenon in August 2010 here
I saw a thorough article about the subject titled Cost-effectiveness of extending Medicare coverage of immunosuppressive
medications to the life of a kidney transplant here.
There have been House and Senate bills
(see here and here for links to the proposed legislation) introduced to deal with this problem and make kidney transplant recipients eligible for anti-rejection medicine for life. This is the ethical thing to do because it increases life expectancy and improves quality of life of the kidney transplant recipient.
It also makes economic $en$e to pay ~$17,000 annually for anti-rejection medicine for the life of the patient because if the organ fails, then Medicare will again pay for ESRD treatment for the person - whether the $100K for a transplant (if you are lucky enough to get it before you die because of the long waiting list) or the ~$70K per year for dialysis.

What is wrong with our policy makers?
People are literally dying from their stupidity!!!

Progress: Bone Marrow Donors Can Now Be Paid For Certain Donations

A legal loophole currently exists which allows people to be paid for their donation of bone marrow when its made through a process similar to a blood donation. They will not be opening themselves up to prosecution which can lead to a fine and jail time.

See this opinion piece by Sally Satel, M.D. (who deserves a big kudos for valiantly challenging the political and medical community hegemony which outlaw people from exchanging valuable consideration, otherwise known as money, to obtain an organ transplant) here which was in the Wall Street Journal this morning for more details.

Obviously, if people want to make altruistic organ and tissue donations, they should be lauded for their sacrifice.

But many people die while awaiting a donation. So paying people to donate is an alternative which should be legal when coupled with certain legal protections. See my posts about the subject here and here Also, we pay physicians for their efforts to keep poeple alive, we pay companies for artificial heart pumps which keep people alive, and we pay for dialysis to keep people alive. Why shouldn't we allow people to pay for organs in a regulated environment to insure people are informed of all of the reasons both pro and con and them let them make their own informed decisions!!!???

The following is a paragraph excerpted from an earlier post realting to this subject:
There is currently a government policy forbidding “valuable consideration” which is legalese for money to be exchanged between parties in order for one party to supply a kidney to the other party who is suffering from ESRD. This policy was introduced as an attempt to squelch the market for trafficking of human organs. While the intentions might arguably have been noble at the time the legislation was passed, with the benefit of hindsight, the unintended consequence of this legislation leads to additional thousands of people dying annually who are on the U.S. kidney transplantation waiting registry but succumb to the vagaries of ESRD before a kidney become available for transplantation.

It is time to modernize and change the National Organ Transplant Act of 1984 (NOTA) so that one more person doesn't have to die needlessly because of this antiquated and obsolete law!!!

Transforming Healthcare: How to turn Data into Knowledge to Inform Decisions

One piece of data does not do much to help people make informed decisions to improve their health. One piece of data is a snapshot of a sliver of time which may or may not be an accurate reflection of the health of a person.

When many individual pieces of data are collected together over a time frame the information gleaned from that information (that is right - many data points come together to become information - not just data) is much more useful to appreciate the state of health of a given individual. A trend can be deduced so the person can understand if they are getting healthier, less healthy, or are pretty stable.

With the current state of technology, it is really close to willful neglect that so many people are constantly bombarded with individual data points about their health - but that data is not turned into (actionable) information.

Case and Point: Many people take their blood sugar daily or even many times a day to monitor their blood sugar. While this data is useful for immediate decisions to help people with diabetes manage their blood sugar, these data points are very frequently not appreciated by people in graphical form to help them understand how well they are managing their blood sugar. And even though there is an A1C test which tells a person the overall state of their blood sugar over the previous 3 months, that figure is often too macro/general a number to help the person understand which individual meal and snack choices directly cause their blood sugar to sky-rocket or stay in normal range.
If people could link (through time and date) their individual blood sugar numbers (data point) with their individual food consumption choices (data point), the information gleaned becomes useful information. Useful information (in the form of many data points) becomes the basis of knowledge. Knowledge helps people and their healthcare providers make informed decisions, or evidence based decisions, which can truly transform the state of people's health.

Looming Shortage of Physicians: Graduates of Foreign Medical Schools

In my previous post, I begin discussing the projected looming shortage of physicians. Here and here are 2 interesting articles that analyze the phenomenon.

The mechanism to fund residency slots need to be reformed to increase the supply of physicians in the U.S.

The U.S. could increase the supply of physicians by over 5,000 annually if it found residency slots for graduates of foreign medical schools who pass all of their examinations to be eligible for a U.S. residency slot but don't get a position because of the shortage of slots available. See the Educational Commission for Foreign Medical Graduates fact card which is linked to here which details the shortage of residency slots (over 5,000 annually compared to surplus supply of qualified physicians). In fact, for the past 3 years, only 42%-44% of these qualified physicians have successfully obtained residency positions.


There is one dirty secret about the impending physician shortage. The primary funding for residency slots come from Medicare and the number of residency slots funded have been capped at the 1996 level (~100,000 positions annually) based on the Balanced Budget Act of 1997. Therefore, even if our medical schools produced an infinite number of graduates, these graduates could not obtain a license to practice medicine until they finished their residencies, and they cannot do that due to the acute shortage of slots available.

There isn't a shortage of physicians, rather there is a shortage of political will among policy makers and politicians to fix this looming man-made disaster. If you show up do your doctor's office and there is nobody their to treat you - unless you are connected or willing to wait a while - like weeks or months - you will know who to blame.

Impending Physician Shortage: Lessons in Supply and Demand:

The above image was taken from here. All rights are served to the Association of American Medical Colleges (AKA the AAMC).

Lately, in conversations with physicians and corporate health plan executives, I have been hearing a lot about the expected shortage of physicians in general and of primary care physicians in particular. The Association of American Medical Colleges forecasts a shortage of 90,500 physicians by 2020. This is due to a confluence of factors including:

1. Many physicians retiring
2. Not enough physicians being graduated from American Medical Schools
3. An estimated 30,000,000 additional Americans who are going to have health insurance from Obamacare
4. The aging of America as baby boomers become senior citizens and require more healthcare services
5. Low reimbursement rates from Medicare and other payors for primary care physicians

Personally, I believe that we won't experience the acute shortage of physicians that many are forecasting. I believe with some minor policy changes, we can properly align incentives to promote an equilibrium quantity of physicians in general and primary care physicians in particular.

I will discuss this more fully in a later post but some ideas to think about:

1. Increase the quantity of Nurse Practitioners and Physicians Assistants
2. Create more residency slots so we can allow more newly minted physicians to place into residencies after completing their medical education. Also, this will allow more foreign medical school graduates to find residency positions which will also increase the quantity of physicians available
3. Mandate more residency slots be offered in areas where shortages exist like the primary care field and less in specialties which offer high reimbursements but no shortages of docs
4. Technological innovations like primary care physician software that automatically orders specific tests and tracks certain metrics (like weight, blood pressure, glucose, etc) to help physicians monitor health without as many office visits
5. Increased use of email, teleconferences, and videoconferences for physician-patient contacts to answer minor questions when a full appointment is not really needed

To be continued....