They Lived to Fight Another Day: Honoring HIV Long-Term Survivors
June 5th marks the day when the first report of what would come to be known as AIDS was published in 1981. That is why we chose it as the day to launch HIV.gov—and it’s also the reason that it was chosen to observe HIV Long-Term Survivors Day. This year, the theme for the observance is “HIV Resilient.”
Early in the history of the epidemic, there were very few long-term survivors. Today, there are many. Most of us are now in our 40s or older, and we are dealing with the long-term effects of HIV on our bodies, the effects of treatment, and the effects of simply getting older (which is challenging enough without adding HIV into the mix!). There is also a cohort of people who were born with HIV, who are now in their 20s and early 30s. Today is a time to recognize and celebrate all of those who lived through the worst years of the epidemic.
I’m grateful to be a member of that group. When I was first diagnosed with HIV on World AIDS Day in 1994, I never thought I would be a long-term survivor. My partner John was a rapid progressor. He died just a few years after he tested positive. My laboratory results showed that I was on that same course. I went from a CD4 cell count of around 450 when I was diagnosed to a count of 201 a year later. That result put me just one CD4 cell away from the CDC’s cut-off for being diagnosed with AIDS.
But the advent of highly active antiretroviral therapy (HAART) in late 1995 changed everything. Finally we had HIV treatment that looked as if it might have the potential to give people back years of their lives that otherwise would have been lost. When I started HAART in 1996, my CD4 count jumped immediately. The power of HAART was seen not only in journal articles but in the lives of people around us, who were able to get up off their deathbeds and start living again.
The excitement about the lifesaving effects of HAART were tempered by the new realities of life in that era. First, there were the side effects. Early HAART included high doses of medications that caused nausea, diarrhea, and other side effects that made people feel sick. Over time, it became clear that early HAART regimens led to other more serious and lasting effects, including increased risk for cardiovascular disease, loss of bone mass, and impaired liver function. Fortunately, today’s medications are more effective and have fewer side effects than those used during the first half of the epidemic.
A second reality was that being alive when you had expected to be dead wasn’t always easy. In the years before HAART, many of us who were diagnosed with HIV were told that we were going to die shortly, and that we should get our affairs in order. So we lived our lives accordingly. People gave up careers and educational opportunities because they didn’t see any point in continuing "normal" life when the end was supposed to be imminent. But, suddenly, we were faced with the possibility that we might have many more years ahead of us and needed to plan accordingly.
A third reality was—and is—common to those who have experienced the effects of war or other mass-casualty events: the mental and emotional fallout. Those who survived the onslaught of AIDS in the 1980s and early 1990s knew many others who did not. We lost friends, partners, and much of our support networks. Some of us had to stop counting those losses, because the number was so huge and horrifying that we couldn't bear to think about them.
And it wasn’t only the deaths that took a toll. It was also the strength and energy it took to care for those who were sick and those who were dying. These experiences took a toll on the mental health of many long-term survivors. Speaking for myself, I know that my experiences during the worst of the epidemic left me damaged. I lost a good deal of my enjoyment of life, and I avoided getting close to people because I couldn’t bear any more losses. Those experiences took something away from me that I’m not sure I will ever regain—but they also made me stronger and helped me keep other problems in perspective.
Thankfully, many more people with HIV are now growing into old age because of the ability to diagnose and treat people with HIV medications that are highly effective and have fewer side effects. But long-term survivors face specific challenges that people who have been diagnosed more recently are less likely to encounter:
They may have developed resistance to multiple antiretroviral drugs and now face limited treatment options.
They may show signs of physical damage from long-term HIV infection and side-effects from early treatments, including neuropathy, liver disease, lipodystrophy, and osteoporosis.
They may be subject to negative interactions between medications needed to control HIV and those needed for diseases associated with normal aging (e.g., heart disease).
They may have been out of the workforce during key periods of their young adult lives, and, as a result, be unemployed or underemployed and facing poverty in retirement.
We need to be mindful of these challenges in developing and implementing our HIV care and treatment programs and in the ways we communicate with long-term survivors.
And that’s where HIV Long-Term Survivors Day and its focus on resilience can help us. Those of us who have survived decades of life with HIV recognize the importance of resilience. For me, resilience is that strength you call up from deep inside yourself—strength that you didn’t know you had. I also see resilience as the feeling that you have a purpose in life and that you are loved, which gives you the persistence you need to push through, even in the darkest times.
But personal resilience isn’t enough. It’s important to recognize that support from family, friends, and communities can strengthen HIV resilience by their support for long-term survivors.
We still have much to learn about the needs and experiences of long-term HIV survivors and to be prepared to care for the needs of an aging population of people living with HIV. I am glad that HIV Long-Term Survivors Day gives us a chance to talk about these experiences, to listen to those who are able and willing to tell their stories, to find some healing for ourselves, and to renew our national commitment to meeting the needs of long-term survivors. They are our witnesses to history, our warriors in the fight against HIV, and our heroes.