This week marks the beginning of an historic event – thousands of AIDS workers, researchers and activists arrived in Washington, D.C. for the International AIDS conference. The event is historic in part because it is the first time the conference has been held in the U.S. since 1990 because the Obama administration lifted the ban on people with HIV traveling to the U.S. It is both significant and poignant that the conference is being hosted in the nation’s capital as it is the epicenter of the continuing AIDS epidemic in the U.S. which has becme a health emergency for Black America.
This week, PBS Frontline presented an amazing documentary, Endgame: AIDS in Black America,. It is must see viewing for anyone who wants to understand the continuing AIDS crisis right here in the United States. As described by PBS:
The film traces the history of the epidemic through the experiences of extraordinary individuals who tell their stories: people like Nel, a 63-year-old grandmother who married a deacon in her church and later found an HIV diagnosis tucked into his Bible; Tom and Keith, survivors who were children born with the virus in the early 1990s; and Jovanté, a high school football player who didn’t realize what HIV meant until it was too late. From Magic Johnson to civil rights pioneer Julian Bond, from pastors to health workers, people on the front lines tell moving stories of the battle to contain the spread of the virus, and the opportunity to finally turn the tide of the epidemic.
I found the stories presented by the documentary powerful and moving, they reminded me of the incredible depth of love that people are capable of even under the most trying circumstances, as well as the increasing ability of science to combat disease and prolong life. Despite these fine qualities, I admit to feeling a certain amount of unease about some aspects of the film – it addresses certain issues considered controversial – like homophobia among African-American clergy and the impact of men living secret or double lives – as well as the relationship between substance abuse, drug policies and the HIV/AIDS crisis in Black America. However, it also deftly avoided certain issues that demand greater examination. In this column I want to use my story and stories from the film to raise some of the issues that contribute to the crisis but remain substantively unaddressed.
Nel, a 63-year-old grandmother is a sweet and beautiful woman who had a tragic experience – she married a man she met in her church, whom she loved and trusted only to find out after the marriage that he had failed to disclose his HIV positive status and had passed the virus on to her. You can’t help but feel great sympathy for her, more so upon learning that she still loves her husband despite his betrayal though she is no longer with him. What saddens me most is that she had no awareness of the need to protect her sexual health and despite extensive pre-marriage counseling by her pastor – no one thought to bring up the issue of STDs. It used to be you needed a blood test to get a marriage certificate – what happened to that? Even without the legal requirement – shouldn’t checking out the health of your partner be part of preparing for marriage?
In 1992, I fell in love with a man who is HIV positive. At the time, we were co-workers whose close friendship developed into deep love. He disclosed his status shortly before he he asked me to marry him and I wrestled with what marriage to him would mean for my life, my health and my future. At the time I didn’t know a lot about HIV and AIDS, I remember I spent one weekend all alone reading everything I could find about the disease and possible treatment – what I found was not encouraging. In the fall of 1992, the news around AIDS was still pretty grim and most doctors believed it was a death sentence – the only question was how long?
Before we decided to get married we sought medical counseling – we wanted to learn more about his prognosis as well as what we should do to maintain my HIV negative status. The first doctor we consulted told us my fiancé had about five years before his health would begin to decline and that it was “unethical” for us to marry. We found another doctor. She counseled us extensively on methods to have safe sex and encouraged us to experiment until we found the ones that worked for us.
I feel the need to share this story because too often we only hear about Black HIV+ men who infect women who have no idea their partner has the virus. We rarely if ever hear about Black HIV+ men who are honest about their status and responsible in protecting the health of their sexual partners. My husband and I were married for ten years and had a normal sex life – we did however, scrupulously practice safe sex – not an always easy task.
Which brings me to the story about Jovanté, the high school football player who fell in love with another Black gay teen who happened to be HIV+. Within a year of their relationship Jovanté had acquired the virus, his partner admitted he had failed to be disciplined about safe sex practices. My problem with the presentation of this story is the implication the result was inevitable – especially when juxtaposed with the subsequent story of Keith – born with HIV – who is dating a young woman who is also HIV+. One is left with the impression HIV discordance in a couple is a health disaster waiting to happen. To be clear, I’m not faulting Jovanté or his partner for what happened to them, I’m criticizing the failure of many health care providers and counselors to acknowledge the difficulties in adhering to safe sex practices, particularly with someone you love and particularly when you are young. People need support in developing consistent practices around sexual expression and health. An HIV diagnosis is thankfully no longer a death sentence – access to anti-retroviral drugs has extended the life span of tens of thousands and turned living with the virus into a long-term disability instead of a life-threatening disease. But it’s not enough to provide medical treatment to extend life, we need policies and practices that improve the quality of life as well as its length. Having healthy and fulfilling sexual relationships is an important aspect of one’s quality of life – no less so for people living with HIV than the rest of us. The fact that people with HIV are living longer means there will be more HIV discordant couples – we need to lift up more examples of successful HIV discordant relationships.
It seems like our only image of a HIV discordant couple is Magic Johnson and his wife Cookie. Magic Johnson has become the face of HIV/AIDS in Black America – for many he represents triumph over the disease. He’s been living with HIV for more than 20 years and has developed a successful business career and appears to have a stable and loving family life. Magic Johnson talks publicly about the need to be tested for HIV and the importance of adherence to one’s treatment regimen but not much about the personal challenges of living with the virus in intimate relationship with people who do not have it. One important aspect of his story is that his wife Cookie was pregnant at the time he was diagnosed with HIV, fortunately she was not infected with the virus and they had a healthy child. Magic and his wife were extremely lucky – he’s been able to enjoy longer life with his family – something we all want. How does Magic feel about that? What advice would he give to other discordant couples who desire to have a child? I’m not saying Magic Johnson owes us this information or has any obligation to talk about it – I’m saying Black America needs more examples of people negotiating this delicate relationship who are willing to share what they’ve learned with others.
I learned the highest expression of love is a partner committed to protecting your health as if HIS life depended on it.
Five years into our marriage it became clear that the medical predictions were inaccurate – my husband remained asymptomatic and healthy with little sign of disease progression. He was then in his mid-30s and wanted very much to become a father. We sought medical advice – they had none to offer. Researcher that I am, I decided to do a little study on my own and learned that doctors in Milan, Italy had perfected the practice of sperm-washing and artificial insemination to enable HIV discordant couples to conceive a child. By the mid 90s hundreds of children had been conceived in Italy by this method with no incidence of seroconversion by any of the mothers. I was elated – a simple and relatively inexpensive answer to our problem. I took the information to my doctor and was told that such a procedure was not available in a clinical setting in the U.S. I inquired why and was told there was a policy against artificial insemination involving HIV+ subjects following some high profile incidents in the 1980s where women seroconverted after being inseminated with sperm from men who turned out to have HIV.
My response – that was then – what about now? I was told that the policy was unchanged and there was little pressure or incentive for the group representing obstetricians and gynecologists that initiated the policy to change it. Our willingness to sign any waiver of liability and pay the full costs for the procedure was irrelevant – the answer was still no. I asked if there was any other treatment or procedure available that would enable us to conceive a child and protect my HIV negative status. The answer was no. I remember saying to my doctor in real shock – let me be clear, if I came to you as a pregnant HIV+ woman you would offer all types of medical interventions to insure I had a healthy HIV negative child but you refuse to provide me with any medical intervention to facilitate pregnancy and healthy birth as an HIV negative woman in a discordant relationship? Sadly, she replied that is the case.
That was 1997, not a lot has changed in the intervening years. Reproductive technology is still not available to the vast majority of HIV discordant couples. According to the Centers for Disease Control women account for about 25 percent of new HIV/AIDS cases in the U.S. – of those, two out of three are African-American women. In 2009, Black women accounted for 30% of the estimated new HIV infections among all Blacks. Most Black women (85%) with HIV acquired it through heterosexual sex. The estimated rate of new HIV infections for Black women was more than 15 times as high as the rate for white women, and more than three times as high as that of Latina women. These statistics cry out the need for strategies that empower Black women to consistently negotiate safe sex practices. Success requires an equal commitment by men to make practicing safe sex a contribution to themselves and others – not a burden to be avoided if possible. I’ve often wondered how many women have contracted HIV in the course of trying to have children with their HIV+ partners. Having a potentially fatal illness does not obviate the desire for children – in many people it makes it more acute – to the degree possible we should affirm and support people’s ability to fulfill that natural desire.
I want to end by applauding the filmmakers who produced Endgame: AIDS in Black America and all the many committed activists that were featured. I want to give a special shout out to the needle exchange activists that were featured in the film who are literally a lifeline to thousands of poor drug users who continue to be victimized by a system that treats them like criminals instead of people with a disease. Because we refuse to acknowledge the disease of addiction, we make drug users more vulnerable to other diseases like HIV and Hepatitis C by denying them access to clean needles. In many states needle exchange is against the law and the people who distribute clean needles to addicts are often subject to criminal prosecution despite their nonprofit life saving activity. These unsung heroes are deserving of special praise and acknowledgement.
Finally, I want to lift up the memory of my friend and mentor, the late Keith Cylar, a proud Black HIV+ gay man who was a defiant and active drug user. He and his partner Charles King, co-founded Housing Works to provide housing and services to HIV+ drug users and others excluded from the system of health care. They grew the organization to a multi-million dollar operation that in addition to providing housing and services also provides employment at their thrift stores, book shops and catering services, all while continuing to successfully advocate on behalf of those living with HIV and AIDS who remain marginalized, stigmatized and underresourced………. Keith, I still miss you, now more than ever……………
HIV is this unbelievable little string that is wrapping itself around all the issues we have missed and it’s saying, look over here!, Look over Here!, LOOK OVER HERE!!!