Sick: LA Hospital Denies Life-Saving Organ Transplant to Medical Pot User (Again)

[Ms. Toad]

20. Allocation is done on a completely neutral basis

Almost entirely according to the MELD score (lab number + weighted for current dialysis patients) with some weighting for regional location.

Unfortunately, there are no scientifically valid means of determining out of all the people eligible based on their MELD score, which ones will be able to care for the organ after donation. That is the reason less objective - but closely related - criteria is used to sort that out just to get in the door to be on the list (or remove you from the list).

A patient who is caring for a liver post transplant cannot, ever, count on others to tend for her care. She will always have to be careful about drug interactions, making sure every physician knows what medications she is taking, and so on. Even before transplant, for my daughter, that means when her gynecologist prescribes flagyl for a yeast infection she cannot rely on her gynecologist's assessment about whether flagyl is safe, she must also consult her hepatologist to make sure he approves. And she is not even listed yet.

The patient is the person in connection with all pieces of the system, who has access to all of the information. She is the one responsible for communication and she needs to demonstrate that she can make sure, for example, that any future oncologist who may - or may not be part of the same system - knows all of the relevant medical information. Including restrictions of any separate medical treatment like a transplant.

If the patient cannot understand and communicate clearly with every doctor caring for her and follow the rules of the transplant program in advance, when she is near death and she more tangibly understands her life depends on it, it is less likely that she will be able or committed to do so when life is once again good. That is just reality, and unfortunately there is no objective or scientific way to sort that out - even though the ability to communicate among physicians and to follow the rules of the transplant program are not direct indicators of post transplant care, but they are very closely related and are about the best that is available.

As for medical marijuana - that is where the patient needs to advocate for a personal exception. By doing that, she demonstrates her ability to be medically compliant - buy communicating her needs clearly, by working with the system to design a plan suited for her needs, and by ultimately following her doctor's orders (even if that means foregoing medical marijuana if she is unable to obtain an exception).

My daughter has a liver disease that is completely unrelated to alcohol - and is patchy (meaning she has healthy portions of her liver intermingled with unhealthy - and the healthy portions are no more susceptible to injury by alcohol than any normal liver would be. Her transplant physician has told her, for now, that she shouldn't drink alcohol - but that realistically she is in college and his expectation is only that she will drink it sparingly. About half of the physicians treating this disease permit a few alcoholic drinks a week. Regardless of his current position, that will change once she is listed. At that point, she will have to comply with rules even though they may be medically inappropriate for her as part of demonstrating that she ought to be eligible to receive one of the organs which are in limited supply.

For the record, she doesn't drink. At all. I'm just sharing that as an example of other similar restrictions that have nothing to do with the legal or illegal status of the material being consumed, or the medical impact of using it, but which would bounce her off the list if she violated the rules.

It is always very helpful when my daughter's doctors communicate well with each other - particularly those in the same medical system - but the reality is that rarely happens and ultimately we are responsible for making sure there is no mix-up, just as she will be post transplant.

I am far more concerned about economic disparity in becoming eligible for the list than I am about disqualification based on things under the recipient's control. Many individuals cannot demonstrate that they have the economic means to care for the organ post transplant (anti-rejection drugs are not cheap), and are ineligible for that reason - and that seems to me much more unfair.