On Nov. 21, President Obama signed the HIV Organ Policy Equity (HOPE) Act into law. This legislation will allow HIV-positive individuals to donate organs to HIV-positive patients.
Predictions say that this change will make available 500 to 600 more organs for transplantation every year. With 120,000 people in the United States waiting for hearts, lungs, kidneys and other organs, the HOPE Act is expected to significantly alleviate the national demand for organ donation.
HIV-positive organ donation has been illegal since 1988 when the Organ Procurement and Transplantation Network (OPTN) amended the National Organ Transplant Act to stop organ donation by HIV-positive patients in order to prevent infection.
Since 1988, the scientific community has made enormous strides in its understanding of HIV. Antiretroviral and other medications greatly extended the life expectancy of HIV-positive individuals. In fact, HIV is no longer the death sentence it was in the 1980s.
However, these medical advances have hit a roadblock in terms of HIV-positive organ transplantation. HIV-positive individuals waiting for kidneys, lungs or other organs, a growing number thanks to an extended life expectancy, are more likely to die on the transplant waiting list than those not infected because of the dangers associated with a more compromised immune system. Furthermore, about 25% of HIV patients also have hepatitis C, a disease that can only be treated with a liver transplant in its advanced form. Thus, with an increasing number of HIV-positive patients waiting for organ donation and a greatly improved knowledge of HIV, it seemed unnecessary to block positive-to-positive transplantation.
Before the amendment could be overturned, however, the scientific community needed to prove positive-to-positive transplants would be successful. Elmi Muller, a transplant surgeon at the University of Cape Town in South Africa, provided much of the research that generated this proof. Muller has performed 26 positive-to-positive kidney transplants since 2008. Only two of these have failed.
Muller’s experience sparked the interest of researchers in the United States including Dorry Segev, a transplant surgeon at Johns Hopkins Hospital. In an email to The News-Letter, Segev said Muller’s research and his frustration with the congressional ban on positive-to-positive donations pushed him to look closer. “The first step was to estimate the potential impact of using these organs on our donor pool; this took about a year, drawing from two large data sources and estimating not only the number of organs that could be available but also the money that Medicare could save in the process.” According to Segev, “The combination of lives saved and health care dollars saved would be a strong argument to carry [the] cause on the Hill.”
In June 2011, the positive-to-positive movement mushroomed onto the national scene. The American Society of Transplant Surgeons, the American Society of Transplantation, the Association of Organ Procurement Organizations, and the United Network for Organ sharing released a joint statement calling for positive-to-positive transplantation in the United States. On Capital Hill, the scientific research spoke for itself but it was difficult to generate interest. According to Segev, “Showing members of Congress and their staff that this was a good idea was relatively straightforward; getting on their radar and then getting the bill on the larger congressional radar was more difficult.” Brian Boyarsky, a Hopkins graduate who majored in public health, worked closely with Segev. He spent countless hours reaching out to anyone who would listen. The work of people like Segev and Boyarsky did not go unanswered. Two years after the release of the joint statement, the Senate approved the bill. The HOPE Act passed the U.S. House of Representatives on November 12th and Obama quickly signed the act into law nine days later. While federal legislation is a huge step for this movement, surgeons and medical researchers must wait for the OPTN to develop ethical and clinical standards to guide medical research on positive-to-positive transplants in the United States.
Even with these policy changes, positive-to-positive transplantation is likely to take hold slowly within the medical community due to unanswered scientific questions. Superinfection, or the infection of an HIV positive organ recipient with an antiretroviral drug-resistant form of the virus, is a very real possibility. If the donor is living, doctors can take time to genotype the HIV strain in the donor and can largely avoid this situation. However, if the donor is deceased, time constraints may not allow for these tests. Furthermore, it is still unclear how antiretroviral drugs will react with medications given during transplant. They may increase the risk of rejection, pushing doctors to administer extremely high, possibly toxic, levels of immunosuppressant medications to HIV-positive organ recipients.
Despite these scientific concerns, Segev remains optimistic: “I’m sure that, given the huge volume of transplants in the United States, we will have the opportunity to learn a tremendous amount about how to optimize the outcomes of these transplants.” Keep an eye on the positive-to-positive movement. It is sure to significantly impact the progress of organ donation within the United States and, with forward-thinking surgeons like Segev, cutting edge changes in the field are likely to occur right here in Baltimore at Johns Hopkins Hospital.
