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View Diary: In America - Dying Teen Denied Being on the Donor list due to Non-Compliance (124 comments)

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  •  Pure Ignorance on the diarist's part. (36+ / 0-)

    The world of transplant medicine is a different animal from treatment medicine. The former are always working from a demand > supply mentality. This breeds a need for discriminators on the margin, because providers are measured and evaluated on success rates.

    Every transplant patient goes thru a 'transplant evaluation' where multiple medical tests are done, infectious disease history is studied, psychological queries are made, and so on. But the worst statement one can make along the way is "I'm not a good pill taker", because after a transplant, you will be taking (very expensive) anti-rejection drugs for the rest of your life on a rigid schedule, particularly in the first few months after.

    Every candidate goes before a hospital board to review the findings of this evaluation. If you don't get the votes, you aren't listed. Simple. Fair? Yes, in my experience.

    So play your race cards or your ethnicity cards But it's simply BS. And if you think it will be any different under Medicare for All or Single Payer, I've got a kidney to sell you.

    •  This is pretty much what I thought, too (11+ / 0-)

      The diary title, taken literally, has to be false. I distrust everything said after the title. These sensationalized diary titles have to stop. Every time I see "reality-based community" here, I laugh.

      Sorry, Tool. You're one of the good guys, but not this time.

    •  I think you are probably right (27+ / 0-)

      My daughter has a complex heart birth defect for which she's had numerous surgeries and eventually may need a transplant. One of the things that her cardiologists have stressed to her over the years is keeping with her medication regimen (beta blockers, ACE inihibitors, warfarin) in order to build a high-quality "record of compliance" with a difficult, complicated medical regimen.

      That way, if she ever hits the transplant list, she'll have a documented record of compliance. As complex as it is now, the regimen after a transplant is way, way more complicated and demanding than what she's experiencing. Missing one dose or being off by hours can create a major health crisis.

    •  It is not ignorance on my (1+ / 0-)
      Recommended by:
      Belle Ame

      part. I understand the process completely of what being on a donor list entails, what it takes to get on the list, and the follow ups you will be required to do.  

      We do not know fully what the Hospital used to make their determination but "bad grades" or run ins with the law should play no factor in determining an individuals worthiness to be considered for a transplant.

      I do not believe Anthony should be denied the chance to be on the list. Even if he is on the list there is no guarantee that he will get a heart in time to save his life.  I hope they reconsider and put him on the list.

      My point with Single-Payer or simply put Medicare for all is that in the United States we pay more per capita then any other industrialized country in the world yet somehow deliver less then adequate care then other industrialized countries.

      All citizens should have easy access to their doctors and the medical care that they need. It would bring down costs and stop hospitals from determining which patients to treat based on socioeconomic, race, risk, and insurance coverage.

      It would be different under Medicare for All due to having easy access to preventative care instead of treating the problems that arise from lack of care. It will not increase the pool of donors, but it sure as hell might increase the amount of time a sick person has to be on the list instead of waiting till you have less then 6 months to live like Anthony.

      “The further a society drifts from the truth, the more it will hate those that speak it.” George Orwell

      by Tool on Mon Aug 12, 2013 at 07:04:45 PM PDT

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      •  plus, if the SCLC thinks there's a case because (1+ / 0-)
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        the determination didn't have enough detail, I'm inclined to think there is an abuse going on. They have a very full plate and would have to be discerning about the battles they choose. They can't afford to pick a weak case.

        So, what I want to know is this: when they make the determination to they usually give such a vague justification? Seems to me that the system can be easily abused if the board who makes the decisions doesn't have to reveal more evidence about what led to their determination.

        How hard would it have been for them to say, "he self-assessed as a bad pill-taker."? or "in the past he has not complied with doctor's orders."?

        Instead the only information they share with the family is that his grades and juvenile infractions are influencing this decision? That sounds pretty bogus.

        Building Community. Creating Jobs. Donating Art to Community Organizations. Support the Katalogue

        by UnaSpenser on Mon Aug 12, 2013 at 07:11:12 PM PDT

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        •  that's not what the hospital said. (7+ / 0-)
          Instead the only information they share with the family is that his grades and juvenile infractions are influencing this decision?
          that's just speculation by a family friend.
          •  yes, but that's my point. the family has, (0+ / 0-)

            presumably given some information to the SCLC which gives them reason to believe something is wrong. The SCLC wouldn't just speak out on a case with no information to support their accusations.

            They also say that all there is is a vague "non-compliance" ruling with no justification. I'm gathering that that's not usual.

            If the SCLC drops it and issues a statement that they have more information which leads them to drop their challenge, then I'll feel it's settled.

            Building Community. Creating Jobs. Donating Art to Community Organizations. Support the Katalogue

            by UnaSpenser on Mon Aug 12, 2013 at 08:19:24 PM PDT

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        •  Re (1+ / 0-)
          Recommended by:
          the determination didn't have enough detail, I'm inclined to think there is an abuse going on. They have a very full plate and would have to be discerning about the battles they choose. They can't afford to pick a weak case.
          Major national organizations have made bigger mistakes than this one before now, and likely will again.

          (-5.50,-6.67): Left Libertarian
          Leadership doesn't mean taking a straw poll and then just throwing up your hands. -Jyrinx

          by Sparhawk on Mon Aug 12, 2013 at 09:47:35 PM PDT

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        •  First off, I personally find the reasons stated (0+ / 0-)

          (via hearsay) just this side of specious.

          If one considers that juvenile school records, disciplinary records (non-judicial), and medical records are all protected by privacy laws, the only way for this person to get all of the data out would be for his custodians to release it all to the public. At that point it would still be only semi-transparent, because transplant boards are not about to release their deliberations. They have to be non-responsive to outside querys, often as a matter of law.

          I can give some whatifs:
          1. What if he smoked (anything)? Generally that means one has to pass a 100% negative random urine test for three straight months, and periodically thereafter during the waiting period. Failure to do so is "noncompliance".
          2. What if he had a slight AAA (Abdominal Aortic Aneurysm). Say 3cm. 5cm is the general limit, so a followup might be required. Admittedly unlikely in a teenager, but it speaks to the level of detail.
          3. What if tests showed prior exposure to hepatitis?  You can't hide that, but may not want it to be public knowledge.

          Not to mention that availability can be very blood-type dependent.

          Equality of outcomes in the transplant world is not in the cards available to be dealt today, even if equality of opportunity were all that we might wish.

      •  a "family friend" said "someone" told them (5+ / 0-)

        it was about grades.  that's pretty flimsy shit.

    •  Much as I sympathize with the case (24+ / 0-)

      if it is as stated, valion speaks the truth of what is done and how decisions are made. Young people are prioritized over older people, too; that's part of the decision process. A teen will almost always receive an organ over an older person in equal need. There may be something to this that we don't and currently can't know. I don't know.

      What I do know is that I have been through the transplant evaluation process. It is really extensive and goes into great detail about your life. What medications do you take. Have you ever used drugs, legal or illegal. If so, when, and when was the last time. What's your sex life like. How many partners have you had. How many partners do you have now (they want you to be monogamous or celibate). How's your support network: describe it in detail. What's your home like. What kind of insurance(s) do you have and will they cover transplantation, and if so, for how much (and they find all this out before you go through evaluation). What other physicians have you seen over the past ten years or so (and they will get a detailed history from the other physicians). Who referred you to the transplant program - they read up on this and talk to the physician at length about you. How's your psychological profile. What are your feelings and expectations in getting a transplant. Have you had transplant education. How is your health in general: is it good enough to ensure that you'll survive surgery and the transplant is likely to last. On and on and on. And yes, part of the reason they want your detailed information from the rest of your physicians is to find out if you are currently compliant with medication. They want to know if you will maintain compliance with treatment. Organs are scarce resources. Most of the people on the transplant list are waiting for a kidney. A good many of them will die before they get an organ. It's not pleasant to think about, but it is what it is, and you know it going into it.

      Too many organs have rejected because patients aren't compliant. Those organs can't just be put into somebody else who's compliant. Once they've been transplanted once, they can't be used again.

      And transplant programs can afford to be choosy. There are too many people out there who need organs. The program that transplanted a kidney into me has deliberately withheld transplants from patients who were legally using medical marijuana prescribed for them by their physicians. It is why I am scared spitless to go on medical marijuana for pain, even though I have my transplant; the chances that I'll need another one in my life are too high. Kidneys, unlike hearts, lungs, livers, etc., don't last a lifetime, unless you choose not to go back on dialysis and die when it fails.

      One way to alleviate the scarce resources problem is for everyone to sign their organ donor cards and talk with their families to make sure they know the person's wish to donate. Another is for every reasonably healthy person here who has two working kidneys to make plans to donate one of them as a living donor, and if you don't know someone who needs one, do it altruistically. Progressives who put their bodies where their values are could eliminate the waiting list for kidneys. Hearts, lungs, eyes, livers, etc. would still be scarce but maybe less scarce if more people would sign their donor cards and evangelize signing them to everyone they know.

    •  This is absolutely totally true (9+ / 0-)

      There are just too few organs, far far fewer than there are potential recipients.

      Getting a heart transplant is a BFD. It is not fun, it is not nice, and it is all for naught if you miss your medications. There is a reason they do this and those of you upset - if you were making the decisions you'd do the same.

      The new technologies that involve things like bio 3-D printing are breathtaking in their possibility. When that happens, it will be only a matter of money.

      Meanwhile, sign your organ donor card, and encourage your friends to do so.

      For compliant patients, the life expectancy after a heart transplant is gratifyingly long.

      Fry, don't be a hero! It's not covered by our health plan!

      by elfling on Mon Aug 12, 2013 at 07:59:54 PM PDT

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