The HOPE Act was a big move in reversing the stance of disqualifying donors & patients alike because of HIV Status. The passage of this act in 2013, led to changes & developing safeguards for transplants in the HIV population.
“Before this act at least 500-600 lives were lost per year because both donors & patients were disqualified from organ transplantation. ” (A statistic taken from this article.)
Transplant as most of us know is not a cure, but a life extension for several diseases.
Not everyone who wants a transplant qualifies, & not everyone who qualifies receives one.
But I am very relieved & cheering this news for giving hope to those who need it, disease status aside. I found out about it yesterday but was still happy to see it circulating in my news feeds today.
I’ve been in awe & impressed in what the HIV community has done to thwart a shortened life expectancy & challenge stigmas, fears, & stereotypes, over time after being subjected to so much game playing at the hands of several entities including politics, pharma & sometimes medicine itself.
This is a victory on several fronts, not just for transplantation as a whole.
This news is huge. It’s news that all of us can be grateful for.
I’m sure too it does the donor families credit to know that their loved ones wishes can be fulfilled within their own community now as well.
That’s an equally important need & legacy to leave.
Absolutely GREAT news!
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But, I’m still fighting Hopkins over even getting listed for a transplant. They have run me thru every test known to be available on the planet and add new ones when I’m not looking. The only reason they have is they utterly ignore the metabolic disorder I have and that a doctor us the reason I need the transplant at all. I am so tired of fighting with them, and with everybody else. No advocates where I am. My employer doesn’t let me work, but tells me that I don’t have a disability. I’m just tired of all of it. And I have a test today and one next week. I do almost all of this on my own, too.
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That’s a load. Since you’ve done most of the testing do you have another center close by you could seek a second opinion from. Know that is not easy but when I had friends who had Columbia in NYC fight them they changed centers and had a very different experience and better outcomes than Columbia had