U.S. Sens. Barbara Boxer, D-Calif., and Tom Coburn, R-Okla, introduced the HOPE Act (HIV Organ Policy Equity Act) on Thursday – legislation that would end the federal ban on federal research into organ donations from HIV-positive donors to HIV-positive recipients. The bipartisan measure – which is also sponsored by Senators Tammy Baldwin (D-WI) and Rand Paul (R-KY) – would open a pathway to the eventual transplantation of these organs, offering hope to thousands of HIV-positive patients who are currently on waiting lists for life-saving organs.
Currently, even researching the feasibility of such transplants is banned under federal law. The Boxer-Coburn bill would establish a regular review process in which the Health and Human Services (HHS) Secretary would evaluate the progress of medical research into these procedures. If the research demonstrates that transplants from HIV-positive donors to HIV-positive recipients can be safely and successfully completed, the HHS Secretary would have the authority to direct the Organ Procurement and Transplantation Network to establish safe procedures to begin such transplantations.
The measure could provide life-saving assistance to HIV-positive patients who are at risk of liver and kidney failure, and urgently need transplants.
“With so many lives at stake, it is time to end this outdated ban on research into organ donations between HIV-positive individuals,” Senator Boxer said. “This legislation would offer hope to thousands of HIV-positive patients by allowing researchers to determine safe and effective ways to transplant these organs and save lives.”
“This legislation will allow those infected with HIV greater hope in obtaining organ donations by lifting the federal ban on research and allowing sound science to explore organ exchanges between HIV-positive donors and HIV-positive recipients,” Dr. Coburn said. “Our scientific understanding of AIDS is much better than when this research ban was established. Those infected with HIV are now living much longer and, as a consequence, are suffering more kidney and liver failures. If research shows positive results, HIV positive patients will have an increased pool of donors.”
Congresswoman Lois Capps (D-CA), a registered nurse, is introducing the legislation in the House of Representatives.
“The shortage of organs available for donation is a matter of life and death for so many Americans. Creating a science-based pathway for medical research to proceed may potentially allow for transplants between individuals with HIV, giving HIV positive transplant patients a new lease on life while also helping to ease the strain on our entire organ transplant system and save health care dollars,” said Congresswoman Capps. “The HOPE Act is a necessary first step to research the feasibility and safety of these transplants and address the growing need for organ transplantation in the HIV positive community. I appreciate the leadership of Senators Boxer and Coburn and look forward to continuing my work with them on this issue.”
The ban on the donation of organs from HIV-positive donors and related research was enacted as part of the Organ Transplant Amendments Act of 1988, but is now medically outdated. With the advances in antiretroviral therapy, many HIV-positive patients are living longer lives. These patients are now more likely to face chronic conditions such as liver and kidney failure, for which organ transplants are the standard form of care.
Currently, there are more than 100,000 patients on the active waiting list for organ transplants in the United States. About 50,000 people are added to the list each year, but fewer than 30,000 transplants are performed annually. Tragically, many patients die while waiting for a transplant.
According to a study published in the American Journal of Transplantation, allowing organ transplants between HIV-positive patients could increase the organ donation pool by 500-600 donors a year and save hundreds of lives.
Ending the ban on these transplants could also reduce health care costs and save taxpayers money. Treating patients suffering from kidney failure is costly – consuming about 6 percent of Medicare’s annual budget – so allowing these transplants could lower Medicare spending by providing more opportunities for patients to move from dialysis to successful kidney transplantations.
New research increasingly supports the safety and efficacy of organ transplant as treatment for HIV positive patients facing organ failure. In addition, a surgical team in South Africa has reported results for a small number of patients transplanted with kidneys from HIV-positive donors – and the outcomes, while preliminary, have been encouraging. The Centers for Disease Control issued draft Public Health Service Guidelines in September of 2011 that recommended research in this area, but noted that federal law has blocked this important research from taking place in the United States.
The legislation has broad support from the medical community and advocacy groups, including the American Society of Transplant Surgeons, American Society of Transplantation, Association of Organ Procurement Organizations, American Academy of HIV Medicine, American Society for the Study of Liver Disease, the Human Rights Campaign, National Minority AIDS Council, HIV Medicine Association, National Coalition for LGBT Health, Infectious Diseases Society of America, Gay and Lesbian Medical Association, United Network for Organ Sharing, The AIDS Institute, amfAR (American Foundation for AIDS Research), Lambda Legal, and the Treatment Access Group (TAG). The bill was introduced on Feb. 14th, National Donor Day, which raises awareness about the need for more life-saving donations of organs, tissues, marrow, platelets and blood nationwide.