By Matt Terrell
August 29, 2016
__________________________________________________________________________________
Alexandra Harry was diagnosed with HIV in 1989, a time when the disease was
a death sentence. Today, with the advent of advanced antiretroviral drugs, HIV
(at least for those with access to proper treatment) is more akin to a chronic
care condition, like diabetes. As such, Harry has had an undetectable viral
load (meaning the amount of HIV virus in her blood falls below what lab tests
can detect) since 1999.
But in 2005, she began to experience extreme fatigue, which was diagnosed as end stage renal disease, or kidney failure. Doctors were unable to say whether her renal failure was related to the disease itself or its treatment—either could be the cause. Her only treatment options were an organ transplant or dialysis.
At the time, Manhattan's Mount Sinai Hospital was part of a National Institutes of Health study of organ transplants on HIV-positive patients (using HIV-negative organ donors). Harry joined the study that same year and was admitted to its kidney transplant waiting list.
This May, after 11 years of waiting and dialysis, Harry finally received a kidney. But hers was a kidney from an HIV-positive donor. She received only the second such transplant of HIV-positive tissue into an HIV-positive donor in the United States—the first was at Johns Hopkins University School of Medicine this March—and is the first to publicly share her story.
But in 2005, she began to experience extreme fatigue, which was diagnosed as end stage renal disease, or kidney failure. Doctors were unable to say whether her renal failure was related to the disease itself or its treatment—either could be the cause. Her only treatment options were an organ transplant or dialysis.
At the time, Manhattan's Mount Sinai Hospital was part of a National Institutes of Health study of organ transplants on HIV-positive patients (using HIV-negative organ donors). Harry joined the study that same year and was admitted to its kidney transplant waiting list.
This May, after 11 years of waiting and dialysis, Harry finally received a kidney. But hers was a kidney from an HIV-positive donor. She received only the second such transplant of HIV-positive tissue into an HIV-positive donor in the United States—the first was at Johns Hopkins University School of Medicine this March—and is the first to publicly share her story.
As of July 29, there are more than
119,000 candidates for organ transplantation on waiting lists, according to the United Network for Organ Sharing. With the
arrival of an HIV-positive organ donor pool, HIV-positive patients awaiting
organs will be given a new lease on life, and others on the transplant waiting
list will receive organs sooner.
South Africa has been performing HIV-positive to HIV-positive transplants since
2008, where 19.1 percent of the adult general population carries HIV,
one of the highest rates in the world. While the UK's National Health Service
Blood and Transplant agency revealed this May that the country has performed four
HIV-positive to HIV-positive transplants over the past five years, the
procedure remains in its infancy.
Transplants involving tissue from HIV-positive persons have been illegal in the US since 1988, when amendments to the Organ Transplant Act made such procedures illegal. The policy made sense at the time, given mortality rates for HIV/AIDS in the 1980s and the intense climate of fear surrounding the disease when the law was enacted (its original language evinced a lack of understanding that HIV was the cause of AIDS.) But today, given advances in medical science surrounding HIV and organ rejection, organs and tissues transplanted from well-screened HIV-positive donors are likely to see similar rates of success as those involving other sorts of high-risk patients.
In 2013, with bipartisan support, President Obama signed the HIV Organ Policy Equity (HOPE) Act into law, which allowed the transplantation of HIV-infected organs into HIV-positive patients. Three years later, during which the National Institutes of Health developed safeguards and criteria for such transplants, HIV-positive patients in need of organs now have another option to turn to in the face of dire demand. Such patients still have the option of waiting for HIV-negative organs, as well, and HIV-positive organs will not be used in HIV-negative patients.
Dr. Sander Florman, the director of the Transplant Institute at Mount Sinai, believes transplanting HIV-positive organs into HIV-positive recipients will help everyone awaiting an organ.
"We don't have enough organs, and many people will die on the waiting list before they ever receive a transplant," Dr. Florman told VICE. "Allowing the transplantation of HIV-positive organs will generate 500 to 2,000 new donors annually and will be the largest increase to the donor pool ever. Whenever someone with HIV receives a transplant and is removed from the list, everyone else will have a better chance."
According to Dr. Florman, safeguards in place for HIV-positive to HIV-positive transplants greatly reduce the risk of virus-related complications. He says that patients and donors are selected who have undetectable viral loads; furthermore, donors are screened for resistance to common HIV medicine. For Harry, this meant that her donor had to match her treatment regimen to ensure a viral match. By making sure that donors don't have a more virulent strain of HIV, the theoretical risk of "superinfection" can be reduced.
August is Harry's third month post-transplant, a critical time for patients. The body can potentially reject the new organ, meaning that it views it as a foreign invader, and the immune system tries to eliminate it. Studies of HIV-positive patients who have received HIV-negative organs have shown that, for unknown reasons, they experience transplant rejection at two to three times the rate of HIV-negative patients. Managing an HIV infection and the antiretroviral drugs used to suppress it alongside post-transplant care and immunosuppressants used to help bodies accept new organs presents a dual challenge for clinical teams. Much research and work remains to increase the safety and viability of HIV-positive to HIV-positive transplants; in one study, five out of 27 HIV-positive South African recipients of HIV-positive organs experienced acute rejection episodes, a 19 percent rate. Thankfully, a biopsy revealed that Harry's new HIV-positive kidney is faring just fine in her body.
Despite the HOPE Act, 15 states still have laws making transplanting HIV-infected organs a felony. While eight centers around the country have signed up to transplant HIV-infected tissue, other transplant centers are caught in a legal conundrum where NIH research goals, federal law, and state law aren't aligned.
This leaves individual hospital programs to pioneer initiatives that influence government policy. In May 2016, an HIV-positive patient at UCSF Medical Center had a small window of time to receive a partial liver transplant from his HIV-positive partner. At the time, transplanting HIV-positive tissue was still a felony in California, and Dr. Peter Stock at UCSF asked California governor Jerry Brown for emergency legislation to overturn the law, so he could help the patient without criminalizing his team.
"Patients with HIV on the transplant list move to death much quicker," says Stock. "We need to encourage HIV-positive to HIV-positive transplants. If a young person with HIV dies of trauma, those organs are good. We should use them."
Today, the focus for activists like Dr. Stock is on increased outreach and education within the HIV-positive community about the HOPE Act. For years, many HIV-positive people have thought they were excluded from being an organ donor. With the passage of the HOPE act and pioneering hospitals like Mount Sinai and Johns Hopkins, they finally have the ability to help save the life of their fellow infected—but only if they know such programs exist.
Follow Matt Terrell on Twitter.
Read more articles on VICE, here.
"Allowing the transplantation of HIV-positive organs
will generate 500 to 2,000 new donors annually and will be the largest increase
to the donor pool ever." —Dr. Sander Florman
Transplants involving tissue from HIV-positive persons have been illegal in the US since 1988, when amendments to the Organ Transplant Act made such procedures illegal. The policy made sense at the time, given mortality rates for HIV/AIDS in the 1980s and the intense climate of fear surrounding the disease when the law was enacted (its original language evinced a lack of understanding that HIV was the cause of AIDS.) But today, given advances in medical science surrounding HIV and organ rejection, organs and tissues transplanted from well-screened HIV-positive donors are likely to see similar rates of success as those involving other sorts of high-risk patients.
In 2013, with bipartisan support, President Obama signed the HIV Organ Policy Equity (HOPE) Act into law, which allowed the transplantation of HIV-infected organs into HIV-positive patients. Three years later, during which the National Institutes of Health developed safeguards and criteria for such transplants, HIV-positive patients in need of organs now have another option to turn to in the face of dire demand. Such patients still have the option of waiting for HIV-negative organs, as well, and HIV-positive organs will not be used in HIV-negative patients.
Dr. Sander Florman, the director of the Transplant Institute at Mount Sinai, believes transplanting HIV-positive organs into HIV-positive recipients will help everyone awaiting an organ.
"We don't have enough organs, and many people will die on the waiting list before they ever receive a transplant," Dr. Florman told VICE. "Allowing the transplantation of HIV-positive organs will generate 500 to 2,000 new donors annually and will be the largest increase to the donor pool ever. Whenever someone with HIV receives a transplant and is removed from the list, everyone else will have a better chance."
According to Dr. Florman, safeguards in place for HIV-positive to HIV-positive transplants greatly reduce the risk of virus-related complications. He says that patients and donors are selected who have undetectable viral loads; furthermore, donors are screened for resistance to common HIV medicine. For Harry, this meant that her donor had to match her treatment regimen to ensure a viral match. By making sure that donors don't have a more virulent strain of HIV, the theoretical risk of "superinfection" can be reduced.
August is Harry's third month post-transplant, a critical time for patients. The body can potentially reject the new organ, meaning that it views it as a foreign invader, and the immune system tries to eliminate it. Studies of HIV-positive patients who have received HIV-negative organs have shown that, for unknown reasons, they experience transplant rejection at two to three times the rate of HIV-negative patients. Managing an HIV infection and the antiretroviral drugs used to suppress it alongside post-transplant care and immunosuppressants used to help bodies accept new organs presents a dual challenge for clinical teams. Much research and work remains to increase the safety and viability of HIV-positive to HIV-positive transplants; in one study, five out of 27 HIV-positive South African recipients of HIV-positive organs experienced acute rejection episodes, a 19 percent rate. Thankfully, a biopsy revealed that Harry's new HIV-positive kidney is faring just fine in her body.
Despite the HOPE Act, 15 states still have laws making transplanting HIV-infected organs a felony. While eight centers around the country have signed up to transplant HIV-infected tissue, other transplant centers are caught in a legal conundrum where NIH research goals, federal law, and state law aren't aligned.
This leaves individual hospital programs to pioneer initiatives that influence government policy. In May 2016, an HIV-positive patient at UCSF Medical Center had a small window of time to receive a partial liver transplant from his HIV-positive partner. At the time, transplanting HIV-positive tissue was still a felony in California, and Dr. Peter Stock at UCSF asked California governor Jerry Brown for emergency legislation to overturn the law, so he could help the patient without criminalizing his team.
"Patients with HIV on the transplant list move to death much quicker," says Stock. "We need to encourage HIV-positive to HIV-positive transplants. If a young person with HIV dies of trauma, those organs are good. We should use them."
Today, the focus for activists like Dr. Stock is on increased outreach and education within the HIV-positive community about the HOPE Act. For years, many HIV-positive people have thought they were excluded from being an organ donor. With the passage of the HOPE act and pioneering hospitals like Mount Sinai and Johns Hopkins, they finally have the ability to help save the life of their fellow infected—but only if they know such programs exist.
Follow Matt Terrell on Twitter.
Read more articles on VICE, here.
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