If you looked up with the word 'intrepid' in the dictionary, you would probably find a picture of George Martinez, complete with his ever-present smile.
If told they had hepatitis B or HIV/AIDS, a lot of people would probably withdraw from life altogether. However, Martinez—who has lived with both—is facing adversity head on, becoming a tireless advocate for patient rights and organ donation. As an activist, he has constantly worked to educate others about issues ranging from organ failure to the difficulties of living with liver disease. Along the way, Martinez has been involved in many organizations, including the AIDS Foundation of Chicago ( AFC ) , the North Side HIV/AIDS Health Coalition, World AIDS Day steering committees and Test Positive Aware Network.
Martinez's efforts have not gone unnoticed. This year alone, he has received the Westside HIV/AIDS Regional Planning Council's Bennett Williams Award as well as the AFC's Mary Dixon Award for Advocacy, of which he is the first recipient. Recently, Martinez was also recognized by the American Liver Foundation and Northwestern Memorial Hospital as a 2005 Patient Honoree.
Martinez—who has lived with hepatitis B for 36 years and HIV for 18 years—talked with Windy City Times/Identity about living with the diseases as well as his plans.
Windy City Times: Was hearing that you had one particular disease harder than hearing about the other?
George Martinez: Living with hepatitis [ involved ] living with shame and a stigma. While I had it I knew that I could never donate blood, so whenever campaigns at work would come around for donations I would quickly hide. I didn't want people to know that I couldn't give blood—and why I couldn't. At the same time, some family members felt scared or alienated. It took time for my family to accept my status.
As the disease progressed, I developed chronic hepatitis [ in the '80s ] . Then, in 1987, I was diagnosed with HIV—and that was devastating. Again, I started wondering who I would tell—and then there was the stigma: Who'd want to have sex with you? Then I again went through shame and alienation. In 1999, I was diagnosed with end-stage liver disease, which is the stage before [ organ ] transplantation—or death. That [ bit of news ] was the hardest to hear.
That is what's happening today, Andrew. More people are dying of HIV through organ failure ( liver and kidney disease ) than they are dying of HIV [ itself ] .
WCT: When did you become a patient-rights advocate?
GM: In 2000, I heard of [ activist ] Larry Kramer's story. He was the first HIV-positive person to undergo a liver transplant. I read his story and thought that maybe I had hope. [ Note: Kramer underwent liver transplant surgery Dec. 21, 2001, at the University of Pittsburgh Medical Center. Kramer needed the life-saving transplant because of end-stage liver failure caused by hepatitis B. ]
Between 2000-2002, things were very hard for me. I had encephalopathy, which is confusion of the brain. I became like a child. The simplest things, like dialing a telephone or flushing a toilet, became challenging; I would be scared to be in my own home. I also suffered from internal bleeding ( because of the cirrhosis of the liver ) as well as water retention. At the hospital, they also had [ to deal ] with esophageal varices ( enlarged blood vessels ) .
I became an activist in 2003, I would say. In 2002, I was placed on a transplant list and [ the impact hit me ] . I tried to get some support and find others I could talk to. I had started searching CBOs ( community-based organizations ) to see if they had support groups for people who were colon-infected; no one did. It wasn't until I spoke with [ the late TPAN executive director ] Charles Clifton that a group started. It's hard to start a support group for hepatitis; no one speaks about the disease. It's a silent killer.
I was also introduced to [ the late activist ] Gigi Nicks. She said 'George, you've got a story to tell. I want you to come to a meeting.' She introduced me to the Chicago-area HIV/AIDS caucus EASE [ Empowerment, Advocacy, Support and Education ] . So that started my advocacy.
WCT: Now tell me about the HIV organ donation law.
GM: The law, which Illinois passed last year, was a major effort. I was instrumental in getting it passed. The Illinois House Bill 3857 was passed a year ago in May and was signed into law by Gov. Blagojevich July 15, 2004.
The law is in place. However, the transplant surgeons in the state's centers cannot use that law because federal law ( National Organ Transplantation Act—NOTA ) prohibits the use of organs from an HIV-positive recipient. This was because of the outbreak of hepatitis C, going back to 1992. So we need to change federal law and that is what I'm advocating. I have confidence that it will be changed.
Right now, there's a National Institutes of Health multi-site study that's called 'Solid Organ Transplantation in HIV.' This study will end in about a couple more years, but patients are needed—and they have to meet certain criteria. We need to focus on this study and get HIV-positive patients who [ also ] have liver disease. [ So far, ] the results are looking good.
WCT: If people are interested in being in this study, what can they do?
GM: Two medical centers here in Chicago are participating in this study: Rush University and the University of Chicago. Also, Northwestern Memorial Hospital—which is not part of the study—also does transplantation and HIV. We're very fortunate in Chicago to have three transplant centers available. The word needs to get out to the medical community, [ including ] primary care physicians, that people with HIV and liver or kidney disease may have options for transplantation. Providers need to be informed.
WCT: And the public needs to know that these centers are around.
GM: Exactly. The public needs to know that there are centers for patients to be evaluated.
WCT: You recently received a couple of awards. Are getting them bittersweet experiences for you?
GM: It does feel bittersweet. I decided after six months of recovery—which are [ the most ] critical during transplantation—to take [ the crusade regarding the bill ] to a national level. Last year, I put my face with that bill.
I've been given the opportunity to continue my life. I want others to have that same opportunity.
When you're in that state of mind when you don't know if you're going to live or die, what are you options? Not very many. So I took a risk and got a transplant [ on May 14, 2004 ] —but it was one I had to take. So far, there have been no complications.
WCT: Did you want to add anything?
GM: Yes. We need to integrate hepatitis into HIV awareness, education and prevention programs. However, more people are getting hepatitis C than B [ which, along with hepatitis A, is vaccine-preventable ] .
Also, those with colon infections may face the decision of organ failure—so they need to address their illness in time.
See www.hivandhepatitis.com .