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New Law Offers Hope to HIV-Infected Patients Awaiting Organ Transplants - 11/21/2013

New Law Offers Hope to HIV-Infected Patients Awaiting Organ Transplants

Johns Hopkins research helps overturn government ban on transplanting HIV-infected organs
Release Date: November 21, 2013

A bill signed into law today by President Obama paves the way to reverse the longtime ban on letting HIV-infected people donate their organs for transplantation after death, a move that offers hope to thousands of HIV patients on transplant waiting lists.

Efforts to change the law came after researchers at the Johns Hopkins University School of Medicine published a landmark scientific paper in 2011. Their work estimated that 500 HIV-infected patients would be eligible for life-saving transplants each year if the ban was overturned, and that allowing those transplants would also shorten wait times for non-HIV-infected patients.

Congressional sponsors of the new HOPE (HIV Organ Policy Equity) Act say the paper, published in the American Journal of Transplantation by Johns Hopkins transplant surgeon Dorry L. Segev, M.D., Ph.D., and research assistant Brian J. Boyarsky, B.A., was instrumental in driving the issue to the fore. The researchers offered medical guidance and worked with politicians from both sides of the aisle in Congress, as well as with advocacy groups such as the HIV Medicine Association, to ensure its passage.

“We expect hundreds of lives to be saved every year because of this,” said Segev, an associate professor of surgery and epidemiology at the Johns Hopkins University School of Medicine. “For many years, we have been forced to forego perfectly transplantable organs. Now we can give patients with HIV the opportunity to live longer and better lives by transplanting these organs. It will be a profound change.”

The ban on organ donation by HIV-infected patients is a relic of the 1980s, Segev says, when it was still unclear if HIV caused AIDS, an emerging epidemic which was almost universally fatal and for which there were no definitive treatments.

Congress put the ban into the National Organ Transplant Act of 1984 and it had never been updated, despite advances in diagnosis and treatment that have transformed HIV from a rapidly lethal disease to a chronic one managed with antiretroviral drugs. HIV-infected patients are now more likely to face chronic conditions common among non-infected people, including liver and kidney failure, for which organ transplants are the standard of care. But many die waiting for an organ to become available. There are 120,000 people on the waiting list for organs in the United States.

“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 president said in a statement after signing the bill. “The HOPE Act lifts the research ban, and, in time, it could lead to live-saving organ donations for people living with HIV while ensuring the safety of the organ transplant process and strengthening the national supply of organs for all who need them.”

Segev said that the new law will quickly turn the United States into the world leader in understanding and managing HIV organ transplantation. Until now, only South Africa has allowed the transplantation of HIV-infected organs into HIV-infected patients, and its experience is relatively limited.

Sponsors of the legislation in the U.S. Senate included Sen. Barbara Boxer, D-Calif., and Sen. Tom Coburn, R-Okla. In the House, U.S. Reps. Lois Capps, D-Calif., Andrew Harris, R-Md., and Michael Burgess, R-Texas, were the co-sponsors.

“As a member of Congress and a nurse, it’s a true pleasure to work with experts in the medical field and Dr. Segev is just that — a true leader and pioneer in his field,” Capps said. “I thank him and his team at Johns Hopkins for all of their hard work and dedication to improving the health and well-being of people living with HIV and AIDS. It was wonderful to work together on this extremely important issue — an issue that he helped raise.”

“As a physician, I have seen numerous times the life-saving joy that an organ transplant brings to patients and their families,” said Harris, a Johns Hopkins  anesthesiologist. “The HOPE Act changes an outdated law by making government work in a more efficient and effective manner for all patients needing transplants — both those with HIV and those without — which is exactly what the American people expect from their elected officials. A physician from Johns Hopkins brought this issue to my attention and I was glad to join the effort.”

Supporting data for the research that corroborated and confirmed the size of the potential pool of HIV-infected organ donors were provided by the HIV Research Network, using information pooled from 18 health clinics across the country, with funding from the U.S. Agency for Healthcare Research and Quality (290-01-0012). It was also supported by the National Institute of Diabetes and Digestive and Kidney Diseases (R21DK089456).

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