I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: MooseMom on October 31, 2017, 02:03:13 PM
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In the most recent edition of Time Magazine (the one with the cover story, "The Wrecking Crew", dated 6 November), there is an article by Alexandra Sifferlin titled "A surprising way to make more hearts available for transplant: Use diseased organs." I have looked all over Time.com and Google to try to find a link to the article so that I can share it with you, but I've not had any luck.
Anyway, the article describes how up to 1,000 donor hearts are discarded because they are infected with Hep C. Thing is, Hep C can now be cured. Maybe some of you have seen ads about Harvoni, for instance. One sad side effect from the opioid epidemic is the increase of donor organs potentially available because so many of the victims are younger and are otherwise healthy.
Penn Medicine in Philadelphia has been conducting clinical trials, transplanting hearts and kidneys from deceased donors infected with Hep C. The idea is that after transplant surgery, the patient in the study wait in the hospital for a few days until the virus appears in the blood, and then they start a 12 week dose of a Hep C drug called Zapatier (the clinical trial is partly funded by Merck).
According to this article, only 30 patients have been through this trial, but everyone who completed the 12 week Zapatier program became free of the virus.
Of course, all of the patients on the trial "must prove that they understand they may not be cured."
So, basically, this means that your life may be saved by getting a new heart or kidney, but you will also be given a serious infection with the hope that it will be cured.
I'm sorry I can't find the link to the article, but maybe one of you can. I will keep trying. But I've posted the basics of the article and am wondering what you all think of this? Would you be willing to be exposed to Hep C in order to get off dialysis with the hope that you will be cured of the infection? This is obviously not the solution for everyone, but as the trial continues, perhaps in the end this will be one way in which the gap between need and supply can be lessened just a bit.
Thoughts?
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Would you be willing to be exposed to Hep C in order to get off dialysis with the hope that you will be cured of the infection?
I would if it lowered the score of the kidney. I am not eligible for a KDPI 1-20 because of age, and 21-35's got preferrentially to oediatric patients. My xplant neph wants me to take anything below 85; my primary neph suggest 60 as a cutoff given my specific case.
If the surgeon called me and said "I have a Hep-C + kidney that scores a KDPI of 18, and normally I could not offer it to you, but I can because of the Hep C", I would take it. (I have no info to suggest that this is being done, and do now know how Hep C effects the KDPI score).
There is another catch... you need to make sure your insurance will pay for the Hep C drugs, or you have a lot of ca$h, since they run about $95K for the course of treatment.
The article in the NEJM: http://www.nejm.org/doi/pdf/10.1056/NEJMp1505074
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I think this is the story:
http://time.com/4996657/heart-transplant-hepatitis-c/
I wouldn't have taken such a kidney but if I wax 20 years older I might feel completely different.
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Simon Dog, thanks so much for that link. I imagine that was the genesis of the Time article.
And Iolaire, thanks for finding the link for the Time article. That was driving me crazy!
I would guess that someone who needed a heart transplant might find themselves in a more desperate situation because there is no "cardiac dialysis". Whereas the existence of dialysis and KDPI scores make such decisions a bit more difficult to make for ESRD patients, at least these clinical trials might result in more organs becoming available for those who want them.
And yes, I'd imagine that the Hep C drug regimen would be costly! Yet another thing to take into consideration. I mean, health insurance companies are so short on cash, right? ::)
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And yes, I'd imagine that the Hep C drug regimen would be costly!
No imagination. The cost of a course of Harvoni is $95,000. There has been an estimate that the total medicare cost of drugs would more than double if every Hep C+ person got the drug.
Some private insurance companies have policies as to the level of liver scarring you must have before getting Harvoni - as in no, we will not let you cure your disease before the damage is done.
There are some companies claiming to import the drug from India for about $1000, however, I have read reports the manufacturer is working to make sure the drug sold at that price is used only in India.
Stats are that in-center D patients pick up Hep C from the clinic about once per 300 patient years. Fresenius now has a policy that they will pay for and provide Harvoni (or similar) for anyone who gets Hep C from treatment at their facilities.
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I would guess that someone who needed a heart transplant might find themselves in a more desperate situation because there is no "cardiac dialysis".
Hi MM, while you are right that there is no cardiac dialysis...The artificial hearts that they have these days are worlds better than the crazy machines that were around after Holly got her heart. When Holly was awaiting there was really no alternative other than a transplant or death
Depending on how bad the heart muscle is...there's the Syncardia one...and I believe that close to 80% f the folks who used those were "bridged over to a heart transplant when a heart became available.
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My nephrologist offered me one of those. "I can get you a kidney in a week. Then we just cure the Hep C."
"Not a chance."
"We have a really good record of curing it."
"I have a really lousy record with transplants and I lost the last one to a CMV infection. Pardon me if I'm not anxious to infect myself with something else. I'll just do the dialysis time, thanks."
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Hi MM, while you are right that there is no cardiac dialysis...The artificial hearts that they have these days are worlds better than the crazy machines that were around after Holly got her heart. When Holly was awaiting there was really no alternative other than a transplant or death
Artificial hearts are still not mainstream, but LVADs (Left Ventricular Assist Devices) are.