Although passed in 2013, the HOPE Act took effect just months ago, annually giving more than 1,000 additional potential transplant patients more…well…hope. Hope for another birthday, more memories to make and a longer life to live to the fullest. Each of those patients is in end-stage organ failure and needs an organ transplant to survive. Each of those patients is also living with HIV.
For years, it’s been against regulation to transplant organs from someone who is HIV positive into a potential organ recipient, even if the intended organ recipient was also HIV positive. Of course the prohibition was intended to protect transplant patients from becoming infected with HIV, against which there are still safeguards. The HOPE Act changed federal regulation, recognizing it makes sense – given the very limited number of transplantable organs available for more than 120,000 people who need one – to look at all ways to save as many lives as possible.
Over the years, HIV treatments have become more effective and accessible, individuals with HIV now live longer and just like the general population, a percentage of HIV positive individuals develop end stage organ failure. Being HIV positive doesn’t keep patients off the waiting list for a lifesaving transplant, they could still receive a donated organ just like anyone else in need. However, for many with HIV an organ from an HIV positive donor would work just as well. Not only that, for every patient who could be transplanted with an HIV positive organ, another person – with or without HIV – would be able to receive the organ that might have otherwise gone into the HIV positive patient ahead of them on the list.
And, transplant patients are not the only beneficiaries of the HOPE Act. Being HIV positive does not deter many individuals who view organ donation as a generous and kind final act after death. Those who desire to save lives through donation can now join the rest of the population in knowing their decision may be honored. The families and friends of an estimated 600 donors annually will have the benefit of comfort and healing that donor family members report after donation becomes a single positive in an otherwise tragic situation. These benefits can be as valuable to someone who has lost a loved one as a newly transplanted working organ can be to a patient in end-stage organ failure.
LifeLink of Florida, LifeLink of Georgia and LifeLink of Puerto Rico will actively evaluate potential organ donors who are HIV positive, and we are honored to work with approved transplant centers to keep hope alive for more patients each year, carry out the decisions of those who have made clear their desire to donate life and support family members and friends who celebrate their loved ones generosity while they also mourn.
HOPE Act – The Facts
- End stage liver and kidney failure is rising in the HIV positive patient population.
- HIV is now considered a manageable disease with antiretroviral therapies.
- HIV positive individuals are currently on the organ transplant waiting list.
- HIV positive transplant recipients have similar patient and graft survival rates (kidneys, liver) post-transplant as non HIV positive recipients.
- Until now, an HIV positive patient meeting organ referral criteria has been deferred as a potential donor.
- All HIV positive donor organs to HIV positive transplant recipients must be conducted as part of a research study approved by an Internal Review Board (IRB).
- Living donors are eligible to participate in an IRB approved HOPE Act research study.
- Multiple transplant centers are currently approved for HIV positive donors to HIV positive recipients. The number of participating transplant centers will grow, and some within the LifeLink service areas are in the process of meeting the criteria established by the National Institutes of Health.
- A recipient’s willingness to accept an HIV positive organ must be verified by two individuals before the recipient can appear on the match run.
- 600 HIV positive donors could potentially save the lives of more than 1000 HIV positive patients in need of transplantation.