Federal lawmakers introduced the HOPE Act on Valentine’s Day 2013 hoping that someday an organ donated by someone who had lived with HIV might save the life of someone living with HIV.
The HIV Organ Policy Equity Act passed with bipartisan majorities in Congress — in the Senate in June and in the House in mid-November. President Barack Obama signed the legislation on Nov. 21.
“For decades, these organ transplants have been illegal. It was even illegal to study whether they could be safe and effective,” the president said in a statement after signing the bill. “But as our understanding of HIV and effective treatments have grown, that policy has become outdated. The potential for successful organ transplants between people living with HIV has become more of a possibility.”
The HOPE Act lifts the federal ban on the donation and transplantation of organs between people living with HIV that Congress implemented in the Organ Transplant Amendments Act of 1988. The 1988 act was meant to ensure that organs from HIV patients would not be given to HIV-negative patients. The blanket ban even barred the collection of organs from deceased people with HIV infections for research.
“Since the ban was implemented, the development of highly active antiretroviral therapy has significantly improved the life expectancy of people living with HIV,” said Jason Cianciotto, the director of public policy for the Gay Men’s Health Crisis in New York City. “As a result, the population living with HIV in need of organ transplantation has grown significantly.”
Cianciotto said passing the HOPE Act is critical in “ensuring that people living with HIV can give and receive the gift of life. The HOPE Act is not only a scientifically sound public health policy, but also a great act of compassion.”
At any given time, the number of people in the United States in need of organ transplants exceeds the availability of healthy organs. More than 118,000 people are actively waiting for organs, but fewer than 30,000 transplantations are performed annually.
Permitting organs from HIV-positive donors to be used for transplant to HIV-positive recipients has the potential to save 1,000 patients suffering liver and kidney failure each year, as well as shortening the general waiting list.
With the president’s signature, the HOPE Act directs the U.S. Department of Health and Human Services and the Organ Procurement Transplant Network to develop and institute standards for research on HIV-positive organ transplantation. In its second phase, the act authorizes Health and Human Services Secretary Kathleen Sebelius to permit positive-to-positive transplantation.
The act also amends federal laws regarding HIV transmission to clarify that organ donations are not barred.
Chief sponsors of the legislation included U.S. Sens. Tammy Baldwin, Barbara Boxer, Tom Coburn and Rand Paul and U.S. Reps. Lois Capps, Michael Burgess and Andy Harris.
Advocates of the new law — representing AIDS United, amfAR, and the American Medical Association — say it has the potential to save hundreds of lives.
“Passage of the HOPE Act will save lives and also help break down the stigma associated with HIV/AIDS,” said Kevin Frost, amfAR’s CEO. “This legislation makes federal organ donation regulations more reflective of the evidence and allows for critically important research to move forward.”
“The HOPE Act is a common-sense policy,” said Dan Salomon of the American Society of Transplantation. “The AST and its thousands of professionals worldwide strongly support this legislative proposal allowing for greater use of life-saving donor organs and much needed research in the area of HIV organ donation and transplantation.”
Salomon said the bipartisan and bicameral efforts to send HOPE to the White House were refreshing.