Morris Murray knows that without the liver transplant he received in 2012, he would be dead.
At the time, Morris had liver cancer and liver failure due to years of toxic medications that he took as a result of living with HIV and Hepatitis C, which he was diagnosed with in 1987.
“When I was first diagnosed with stage 4 liver disease in 1999, I was shocked. I was still feeling pretty well and very active,” he recalled. “I knew I had been diagnosed with what is now known as Hepatitis C when they started doing testing, but I thought it was dormant. It wasn’t.”
In 2004, he said, he was referred by his doctors at Johns Hopkins to the Thomas E. Starzl Transplantation Institute in Pittsburgh. “At that time, Hopkins did not perform transplants on people with HIV,” he said.
Murray was initially accepted as a candidate there, but was denied coverage for the transplant after his insurer deemed the procedure “experimental.” The insurer eventually approved his coverage, and he was placed on the national transplant waiting list.
“I did not receive an organ at that time, although I was called as the backup patient twice,” he said. “In 2006, Hopkins began doing transplants on people with HIV and I was dual-listed there and also at Pittsburgh.”
Although he was eventually cured of Hepatitis C when a new drug came out in 2011, his liver was severely damaged. When he was diagnosed with liver cancer in 2012, it led to him receiving two transplants — one in 2012 and the second in 2013.
“I never really thought that I would get a transplant. It seemed so foreign to me, to take out my organ and to have someone else’s organ in place of it. It was like talking about something that you know will never happen,” he recalled. “I spent most of those years just looking and hoping for a cure for Hep C. I started going to the transplant conferences, listened to the speakers, and learned more about transplantation and meeting so many providers that genuinely cared. It was then that I believed it was possible.”
He said he also followed the transplant candidate protocol — never missing an appointment and “doing what I needed to do to survive.”
Now 63, Murray considers himself extremely lucky. Back then, his HIV status would have prevented him from receiving a transplant.
But he wound up receiving a liver three years before the HIV Organ Policy Equity (HOPE) Act was enacted in 2013, allowing research into transplanting organs from HIV-positive donors into HIV-positive recipients.
“I think the fact that I made it this far and became a candidate for transplantation can give people hope,” Murray said. “Who you are and who you love doesn’t prevent you from donating or receiving an organ. For those living with HIV, we’ve laid the foundation to make giving life through organ donation a part of our community with the HOPE Act. Now, we just have to utilize it.”
As of this month, the HOPE Act has resulted in 396 lifesaving transplants made possible by 208 HIV+ donors, according to the United Network for Organ Sharing.
But more work needs to be done.
Although more than 150 million Americans are registered as organ donors, more than 100,000 Americans are currently waiting for a lifesaving organ. In Maryland and the metro D.C. area, more than 4,000 people are waiting, according to Infinite Legacy, a nonprofit organ procurement organization serving the greater Washington, D.C., area.
Organs that may be donated include the heart, liver, kidneys, lungs and pancreas, as well as intestines, the group says. So can skin, corneas, bones, veins, connective tissue and heart valves.
As LGBTQ Pride Month ends Friday, Murray wants the public — particularly the LGBTQ+ community and those living with HIV — to be aware of the HOPE Act.
“It is important for everyone to participate in the donation and transplantation process. I know many policies excluded the LGBTQ community for many years, but that is in the past, so a lot of work has to be done to let people know that is in the past,” Murray said. “The future is in their hands.”
The Baltimore Banner recently asked the Locust Point resident a series of questions about The HOPE Act, living with an AIDS diagnosis and the importance of organ donations.
What has it been like to live through the AIDS epidemic?
I started going out to the bars and clubs in 1977, when the drinking legal age was 18 in Maryland. Stonewall (the spontaneous 1969 protests by members of the gay community) was in the rearview mirror and pride celebrations were popping up in cities across the U.S. Disco was at its height and the best music was in the gay clubs, which brought everyone out. I truly felt that progress was being made and acceptance was widespread.
The AIDS pandemic changed all of that progress. We [gay men] were becoming lepers in society and at the same time trying to navigate our own health care with an incurable disease. It was all new and patients and providers were learning together. In the earliest days, 1981-83, living in Baltimore, many of us in the clubs thought as long as we didn’t go to New York or San Francisco, we would avoid it. That didn’t last long. When it began to hit home, there was no test to get, no preventive medicine or any medicine other than to treat the opportunistic infections. Even when a test became available in 1985, there were still no medications to take. After [the HIV antiviral drug] AZT was approved, I [tested positive] in 1987 and sought treatment at what was then the Moore Clinic at the Johns Hopkins Hospital, now the Bartlett Specialty Clinic, where I still receive care. I was on AZT monotherapy for nine years, until the Highly Active Antiretroviral Therapy medications came out in 1996. I have been on multiple medications over the years as the medications improve and currently maintain an undetectable virus status.
How has the HIV Organ Policy Equity Act positively affected the LGBTQ community and those with HIV/AIDS?
The positive impact of the HOPE Act is still in its infancy. There has been huge progress; it is law, and it is actively saving peoples’ lives. But only a fraction of transplant centers in the U.S. right now are licensed for HOPE transplants, so there is certainly more work to be done. We need to raise awareness in the LGBTQ community, so that we increase donors within the community, especially those living with HIV. For true equity, we have to be as equal a partner in organ donorship as society as a whole. For so many years, we had chains holding us back, but now we have the chance to have an organ policy that works for everyone. If more organs are used between a donor and recipient with HIV, then that frees up more organs for others. The way to achieve that is to increase donors.
How were you able to receive a transplant before the passage of the HOPE Act?
Before the HOPE Act, there were some transplant centers that did transplants on people living with HIV from donors without HIV. Johns Hopkins was always my home base and is where I received my regular care for HIV. I had great doctors that kept me informed of clinical trials, new meds, whatever was going on. I was on the waitlist for over seven years, so I got to know the doctors well. I’ve always been both medication- and appointment-compliant, and I think that helped. I was very tenacious too. The first donor on December 31, 2012 was a liver from a 66-year-old man. That organ failed to graft and I was put at the top of the list for another liver, which I received on January 4, 2013. That liver was from a 21-year-old woman. She had passed from an asthma attack, and was an organ donor. I met her family for the first and only time at the Donate Life Family Fun Run last September, that is sponsored by Infinite Legacy.
What do you want this coming generation to know about HIV/AIDS?
If you’re sexually active, either use a condom or PrEP [pre-exposure prophylaxis].
How did the pandemic affect you?
I did all the things that I was supposed to do, but unfortunately caught COVID early on before any vaccines. It was in May of 2020, and I think I was the first Johns Hopkins transplant patient who had gotten it. I had doctors on high alert. Even my transplant surgeon, who practices in Arizona now, called me. I actually recovered pretty quickly and didn’t have any breathing issues. During the pandemic, I would walk my dog to the dog park every day and a group of us dog friends all supported one another and survived together.
What do you want everyone to know about organ donations?
It extends lives. I had stage 4 liver disease, [which] progressed to liver cancer. I would definitely not be here today if not for the generous gift of a donor. It’s been over 10 years and I think of all I have done in those past 10 years. It’s been wonderful.
What can the public do to help with organ donations and HIV/AIDS?
Sign up to be an organ donor at infinitelegacy.org or at your local motor vehicle office. Volunteer for an organization to help sign people up. And talk about both. The most freeing experience for me was when I was 30 and told my HR department about my HIV/AIDS diagnosis and disclosed it to my friends. Not hiding anything lifts a burden off of you.