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Dominick Shattuck, PhD, is a social and behavioral health scientist at FHI 360. Dominick has previously shared his reflection on Magic’s HIV announcement on FHI 360’s “Degrees” blog.
Recently, I was reminded that my research on HIV started 20 years ago and at the time, I didn’t know it. November 7th, 1991 was the day that Magic Johnson announced that he is HIV-positive.
That afternoon, my five roommates and I, all college athletes, huddled around the TV watching ESPN in disbelief. Magic was the main combatant to our beloved Larry Bird, but respected as a basketball icon with a warm smile and an undeniably great personality. We hated what he did to our Celtics, but nobody could hate Magic Johnson. As we sat in the dorm and listened to Magic tell us that he was HIV-positive, a strange discomfort set in among us that was based in a few different things: 1) our ignorance of HIV, 2) our denial that this could happen to someone we knew (because a young person’s attachment to an icon is real), and 3) our misunderstanding that being HIV-positive meant almost immediate death.
In the weeks that followed, Magic’s announcement was a part of our conversations. We discussed the reports of his numerous sexual partners, the stigma he faced from other players (i.e., Karl Malone) and all the pills he needed to stay alive. Later, we watched in awe as he played basketball again at the highest level and on more than one occasion forced governments (such as Taiwan) to make an exception to their visa policies. At the same time, our dormitory brought in HIV-positive speakers, young people, our age who contracted the infection through sex or drug use. Many of the speakers were far less healthy than Magic Johnson. And condoms became part of our regular conversation about sex. After Magic’s announcement, we talked about using them, in our own way, for more than pregnancy avoidance.
Today I thought I would take a few minutes to remind folks of this event because I feel it’s relevant to our work and likely a relative experience that we all shared in different contexts. If you’re less familiar with how newsworthy Magic’s HIV status announcement was, you can read this ESPN article or watch the documentary, “The Announcement.” The article provides the following quote, which gives a small glimpse of the impact Magic’s HIV positive status had on our country in 1991, “It’s the first time I’ve ever seen reporters crying.”
Twenty years later, Magic is alive and doing well thanks to his drugs, great medical care, healthy lifestyle and a positive attitude. Although the focus of our work does not target celebrity athletes with worldwide appeal, those things that keep Magic alive and the impact of his announcement are relevant to our work. They also reflect changes in attitudes and behaviors toward HIV that many people never imagined could happen.
Greg Louganis is a gold-medal-winning Olympic diver and author. He tested positive for HIV in 1988 and has become a prominent and inspirational activist.
It has been almost 25 years since I was diagnosed with HIV. At the time the only drug we had available for treatment was AZT. The prescription for AZT was two pills every four hours around the clock. It’s a bit of an understatement to say this was not conducive to a good night’s rest while I was in training for a challenge of a lifetime, the Olympics.
Dealing with HIV was, on a daily basis, a physical and emotional challenge. The fear, the shame, the pain were, at times, almost more than I could bear. But then, it’s not really in my makeup to give up.
Ten years after I was diagnosed, I thought I would have to say good-bye to my friends and family. I was wasting away to almost nothing. Alone, I boarded a plane and flew thousands of miles from my home, where I checked into a hospital under an assumed name. To my good fortune, my doctors found the treatment to address the fungal infection in my colon and I recovered! But the next issue to face was how the heck to pay those enormous bills?! I didn’t claim it on my insurance as I was afraid of anyone finding out about my diagnoses.
I also survived the Protease Inhibitors treatment – not an easy ride! But it gave hope to many who were failing on other medications.
Now today, holy moly. I can’t believe I’m here. And the longer I live the more exciting my life becomes. So many new adventures before me and I am looking ahead fearlessly!
While it is comforting to know HIV is no longer necessarily a death sentence, I would be negligent if I did not address prevention. I wouldn’t wish my drug regimen on anyone… the side effects, not to mention the cost. Thankfully, the treatments are MUCH more tolerable and there are choices now.
I have spoken with quite a number of young, newly diagnosed men, and the first questions they are plagued by are “Why?” and “How?” Accidents happen. In the long run, does it really help to let yourself go there? It just “is.”
On a practical note, the one thing my HIV has taught me is the importance of exercise to help me tolerate my meds. I think my workouts are as important as the meds themselves. Also, I alleviate stress in my life; stress kills! I also spend time trying to tweak my thinking, looking at – and accepting – what I can change and what I cannot. It’s simple enough and it becomes easier the more I practice it!
The fact is I live with a virus called HIV; it is a part of me, like an old friend. At times we challenge each other. But it’s clear to me now that those questions “How?” and “Why?” are irrelevant. They do not support my constitution; they inhibit my growth as a human being.
Though it may be cliché, I actually am thankful to my HIV; it has given me perspective and pushed me to pursue my passions because I don’t know how much time I have left on this earth. I have truly learned to appreciate every day. While I was expecting to be gone within 5 years of my diagnoses, it has now been 25 years and the light of my life has never been brighter. I have someone with whom to share my adventures, and amazing opportunities for the future!
I have been incredibly blessed to have had such strong support and understanding as I’ve told the world about my HIV. Yes, I have my haters, but I give as little energy to those people as I possibly can. And I practice choosing words that are supportive to myself and others. I do my best not to participate in gossip and trash talk because I am sure it affects my T-cells. It’s easy to spin in other people’s stories, but it’s also pointless. And, it’s exhausting!
That’s not to say all stress is bad…. I am a bit of an adrenaline junky. Now in my 50s, I’ve taken up trapeze, and next year, I’m looking forward to an incredible SCUBA diving trip and a sky dive!
Awareness is my path. Do the people around me make me feel good? They can stay! Those who seem like a black hole and bring me down, I let them go. It’s been a long road to get here, but now that I’m here, I’ve chosen a joyous and happy life!
No one knows how long we have, so all we can do is be at peace with ourselves and make the most of our opportunities. I never thought I would have such a wonderful impact…to be able to try to make everywhere I go better because I was there… to have a purpose! Actually, don’t ask what my purpose is, because it shifts as events present themselves. But right now, it has to do with living outside of myself and being in service to others.
It’s been 25 long years filled with trials, adventures, lessons, and ultimately – at last – love. I love my life so in turn, I love my HIV; it is a part of me but doesn’t define me.
Robyn Dayton is a technical officer at FHI where she works on the research utilization portfolio of youth reproductive and sexual health activities.
The findings of HPTN 052, that “men and women infected with HIV reduced the risk of transmitting the virus to their sexual partners by 96 percent through early initiation of oral antiretroviral therapy” (see full story here), give the HIV prevention community a new and potentially highly effective tool in its efforts to reduce the spread of HIV.
Simply put, starting antiretroviral therapy (ART) before it’s required for one’s own health can substantially decrease the risk that a person living with HIV will pass the virus on to his or her sexual partners—a discovery that could be an incredible boon for young people, the group that has the most new HIV infections per capita. (Every day, some 2,500 young people acquire HIV, and young people accounted for 41% of new infections in those over 15 in 2009.)
However, there are two clear prerequisites to realizing the promise of this approach for youth, and neither one of them is all that likely to be met. First and foremost, in order to start ART, a young person has to know his or her status—most young people infected with HIV don’t. (After all, if a young person can’t admit that she’s sexually active, she certainly doesn’t want to go seeking evidence, in the form of a positive HIV test, that this is the case.) Second, it’s often an older person who infects a younger one—especially older men having sex with young women—so young people knowing their status isn’t enough. Older people who have sex with young people need to not only know their status, but also care enough about their young partners to begin taking ARVs before it is necessary for the maintenance of their own health. But in societies where women have little value and young women need to seek out older partners in order to meet their financial needs, the power differential in this type of partnership doesn’t lend itself to both partners’ health having equal value.
So how likely are young people to benefit from this new finding?
If this sounds cynical, it isn’t meant to be. HPTN 052 offers hope for a number of people worldwide and is an incredible step forward in HIV prevention. However, it is important to think about whether those who most need a cutting edge HIV prevention strategy (youth) will have the opportunity to benefit from it. And if the answer is no, it’s up to the people who care about youth to work toward a world in which that opportunity is created.