Sometime in the next few days or weeks — whenever he can adequately gather his thoughts — a Mississippi man plans to sit down and write a very important letter to a family he has never met, but whose legacy he will carry with him for the rest of his life.
The man, who is HIV-positive, is in his 30s and wishes to remain anonymous. He recently became among the first patients in the United States to receive a kidney transplant from an HIV-positive deceased donor. The HIV-positive to HIV-positive transplant happened at the University of Alabama at Birmingham. UAB Hospital is the first in the Deep South to achieve an HIV-positive to HIV-positive transplant, and only the fourth hospital in the country to do so.
These transplants were made possible in part by the HIV Organ Policy Equity (Hope) Act, bipartisan legislation signed by President Barack Obama in 2013 that enabled HIV-positive people to be organ donors upon death.
“The very disease most people consider a death sentence is the same disease that has now given me a second chance at life,” said the UAB transplant recipient. “I want to tell the family of the donor ‘thank you.’ He or she has given me a second chance, and that’s something they didn’t have to do. Without their generosity, I would have been on the waiting list for a long time, and I may never have had a chance at transplant. I am truly grateful.”
The HOPE Act was implemented late in 2015, and the first two transplants performed under the provisions of the act were performed earlier this year. The HOPE Act permits use of organs from HIV-positive donors for transplantation into HIV-positive candidates under approved research protocols designed to evaluate the feasibility, effectiveness and safety of kidney and liver transplants.
UAB is one of 13 centers approved to perform HIV-positive to HIV-positive transplants out of the 272 kidney transplant centers in the United States. UAB joins Johns Hopkins University in Baltimore, Mount Sinai in New York and the University of California-San Francisco as the other transplant centers in the United States to perform HIV-positive kidney or liver transplants.
“This is a great achievement for many reasons, and especially for our patient, who did not have to endure years of dialysis and will now have a chance to live a longer, healthier life,” said Jayme Locke, M.D., surgical director of UAB’s HIV Transplant Program and transplant surgeon on the case. “The HOPE Act helps address the real supply and demand problem we have in transplant. We have many people who need kidneys and not enough donors to meet the demand. The opportunity for HIV-positive individuals to now be organ donors identifies a new source of potential organs, while at the same time freeing up organs for patients who do not have HIV. It’s a tremendous benefit to everyone who is in need of transplant.”
Transplant greater benefit than dialysis
Research shows the opportunity to achieve transplant is especially vital for HIV-positive patients like UAB’s recipient. HIV-positive patients on dialysis have a higher risk of cardiovascular disease, infection complications and mortality, which is 5 to 15 percent for HIV-positive patients, depending on other comorbidities.
“HIV-infected individuals on dialysis are twice as likely to die as compared to their uninfected counterparts,” said Shikha Mehta, M.D., transplant nephrologist in UAB’s School of Medicine and medical director of UAB’s HIV Transplant Program. “Research has shown that kidney transplantation reduces this risk of death by 80 percent as compared to staying on dialysis. Survival benefit is achieved as early as within three months of transplantation. Not only do they gain additional life-years, but their quality of life is exponentially improved.”
UAB’s patient started dialysis treatments for a second time in April 2015; he went on dialysis the first time in 2010 for almost three months after it was discovered he was in kidney failure with only 5 percent kidney function. He saw his condition improve immensely after starting HIV medication then; but the disease ultimately took its toll on the organ, resulting in his second stint on dialysis.
Locke says UAB’s patient would very likely have had to wait nine more years before having a chance at transplant if not for the HOPE Act. HIV-positive transplants were illegal until the HOPE Act was passed. It was illegal even to study whether HIV-positive transplants could be safe and effective.
|“I was fortunate to be at UAB, where the standard of care I received from doctors, nurses and nurses’ assistants was truly second to none. Now, I have an opportunity to share with others living with HIV that there is hope. There is a chance. ”|
The act was passed to reflect the medical advances that had been made in understanding and treating HIV.
“The HOPE Act is going to help thousands of HIV-positive patients like our patient as more and more HIV-positive people register to be donors,” Locke said. “Improving the care for people living with HIV is critical to fighting the epidemic.”
UAB’s patient says his health has improved immeasurably in the few short weeks since his transplant. His feet and knees, which were sore and tender prior to transplant, feel great. His energy has been restored, and he is eager to get back in the gym and lose some of the weight he gained as part of his dialysis treatments.
He is also on track to get his teacher’s license early in 2017 and fulfill his personal goal of becoming an educator. These are all things he says he never gave up on achieving — he worked full time and went to school while undergoing dialysis — despite his declining health. His encouragement to others experiencing organ failure as a result of their HIV is to never give up that hope.
“I never felt like my HIV diagnosis was a death sentence, even after my kidneys failed because of it,” he said. “I was fortunate to have a strong support system in place at home with family who helped me get to my doctor’s appointments. I was fortunate to be at UAB, where the standard of care I received from doctors, nurses and nurses’ assistants was truly second to none. Now, I have an opportunity to share with others living with HIV that there is hope. There is a chance. And to stay positive. I also have a chance to tell others who are living with HIV that they have an amazing opportunity. They have the power to save a life by registering to be an organ donor. Someone saved mine, and it is an incredible blessing.”
Visit www.alabamaorgancenter.org to register as an organ, eye and tissue donor.