Update, 7/29/2013: The Senate bill now has 14 co-sponsors and passed in the Senate on June 17, 2013. On July 15, it was referred to the House of Representatives committee, where approval is expected later in 2013.
The HIV Medical Association and several other patient organizations co-sponsored a congressional briefing in June 2012 on lifting the 25-year ban on people with HIV donating organs to transplant recipients with HIV. Sen. Barbara Boxer (D-CA); Sen. Tom Coburn (R-OK), a physician; and Rep. Lois Capps (D-CA), a registered nurse, were the congressional sponsors. The participants were two transplant surgeons, a representative from the United Network for Organ Sharing (UNOS) and a kidney transplant recipient who is HIV-positive.
The rationale for lifting the ban, an amendment made to the National Organ Transplant Act in 1988 when fear of AIDS transmission was high, is based on several factors. Patients with HIV are now living longer because of more effective medications, but often their liver and kidneys are damaged from years of exposure to HIV, hepatitis C (HCV) and harsh medications to treat them. Hundreds of patients with HIV are on the list for an organ transplant. Many die waiting because their weakened immune systems succumb to infections.
On National Organ Day in February, Boxer introduced S.330, the HOPE (HIV Organ Policy Equity) Act bill, in the Senate to set standards of quality and create protective measures for research on organs infected with HIV and their potential for transplantation. That same day, Capps introduced H.R. 698 in the House of Representatives. Both bills were referred to committees.
This news is relevant to people with hemophilia who contracted HIV from contaminated factor products decades ago, before stringent blood safety standards were in place. Many face difficult decisions when they learn they have end-stage kidney or liver disease and need a transplant.
In contrast to those with HIV, patients with HCV can choose between accepting an organ from a donor with hepatitis C or waiting for one from an uninfected donor. “We want people with HIV to be able to make the same choice,” said Dorry L. Segev, MD, director of clinical transplant research at Johns Hopkins School of Medicine in Baltimore, in an interview with the Wall Street Journal published October 11, 2012. Currently, patients with HIV can receive organ transplants only from uninfected donors. According to UNOS, 48 of the 242 transplant centers in the US now perform transplants on HIV patients, up from 25 in 2005.
In July 2011, UNOS, along with the American Society of Transplant Surgeons, the American Society of Transplantation and the Association for Organ Procurement Organization, released a joint statement calling to lift the ban.
However, serious concerns remain about transplanting organs from donors who are HIV-positive. One is the possible risk to the recipient of receiving an organ from a donor who may have a more virulent or more drug-resistant HIV strain. Both scenarios could potentially change the recipient’s status from HIV-positive to having full-blown AIDS.
A possible solution would be to accept organs only from donors who had been on antiretroviral therapy for at least six months prior to donation and whose virus had been suppressed. Further, a study published in Surgery in 2012 showed that post-transplant infection rates were higher for patients with HIV who received healthy kidneys and/or livers. A higher rate of organ rejection was also found in patients with HIV compared with noninfected individuals.
Additionally, an organ from an HIV-positive donor could inadvertently be transplanted into an uninfected recipient.
Before transplants between HIV-infected donors and recipients are approved, more clinical trials will need to be conducted. Once data show the viability of such procedures, patients with HIV needing an organ transplant might have the same options as those with HCV.