Wednesday, November 28, 2012


A Bad Start with a Promising End: HIV and HPTN 052


When growing up, things seemed simple: eat, sleep, chores, play.  There was little to worry about and nothing besides the proverbial here-and-now mattered much.  I started elementary school in Central Florida, in a community that was exposed to HIV in unsettling ways.  At school, I remember playing "tag” during school recesses.  In the late 1980s, “tag” took on a different name.  Inspired by what we constantly saw on evening television, “tag” on the playground became known as the “AIDS game” where being tapped meant one had AIDS.  As children, we knew little about the disease and few parents, including my own, made efforts to further describe it.

People that we knew or “knew about” were gradually disappearing.  I often found myself reading their obituaries in the local newspaper--an odd yet intriguing pastime.   These obituaries revealed a lot about what was happening during this time.  Young faces--ages 16, 22, 24, 30—mostly male, hemophilic, and sometimes gay seemed to die in the same way.  “After a long fight with a terminal disease, he passed away from complications caused by pneumonia.”
 
The rumor mills were in full force to fill the gaps.  Eventually, rumor gave rise to fear and AIDS made its way from the obituaries to the front page.  In 1987, the house of local family with three HIV-positive sons was set ablaze.[1]  The news was shocking: How could anyone do this?  Was AIDS so feared that neighbor could be pitted against neighbor in blind efforts to control it?  The news made many of us doubt if AIDS could ever be viewed in the same light as other diseases as cancer and diabetes.

In 1996, good news came in the form of a group of medications called anti-retroviral therapy (ARVs).  This news gave hope to ending what was then considered the worst disease imaginable.  It gave optimism to people who were otherwise destined to die.  With ARVs, a diagnosis with HIV/AIDS could no longer be viewed as fatal, but rather a manageable, long-lasting illness.

Test and Treat?

Fast forward to May 12, 2011.  On this day, results of the HPTN 052 clinical trial announced that if a heterosexual, HIV-positive person continually takes their ARV medications, the risk of transmitting HIV to their sexual partner could be reduced by 96%.[2]  In other words, HIV-positive people taking ARVs were more than 20 times less likely to infect their partners than untreated people.   The study was groundbreaking.  In the words of UNAIDS executive director, Dr. Michele Sidebe, the HPTN 052 findings were a definite “game changer” in how we thought of HIV prevention.
 

Previously, doctors were reluctant to start people on treatment as soon as they tested positive.  They were often concerned with the costs of doing so and the harms that came with starting early treatment.  This study provided the first evidence from a clinical trial--the gold standard in medical research—that “test and treat” was actually effective in reducing HIV.

In spite of the study’s great news, we still have a long ways to go.   Right now, the money that we currently have for HIV/AIDS programs is very limited.  Many clinics in Sub-Saharan Africa are turning away patients who are not just infected but close to death.  In some states, the money provided by the Ryan White Care Act is running thin leaving poor uninsured people on waiting lists for medications.

The news of HPTN 052 brings new hope in the nearly 30 year fight against HIV.  Now, we can no longer think of AIDS an incurable disease and actually start imagining what an “AIDS free generation” could look like.  Still, we must not disregard the difficult days of 20 years ago.  We should be reminded of the images that plagued our newspapers and news broadcasts—images of young men dying from AIDS-related causes, children thoughtlessly assuming that AIDS was death, and communities turning against each other for fear of the disease.






Ray is a Doctoral Candidate in Health Policy and Management at Emory University.  He has previously worked with several multinational organizations in Zambia and Thailand on programs related to HIV and TB care/treatment.



 [1] "Arson Cause Of Fire At Rays -- Boys Start School Today" Orlando Sentinel, September 23, 1987

http://articles.orlandosentinel.com/1987-09-23/news/0150050182_1_andy-ray-ray-family-varnadore 

[2] “Prevention of HIV-1 infection with early antiretroviral therapy.” http://www.hptn.org/research_studies/hptn052.asp

 

15 comments:

  1. Great post, Ray! I thought that opening with stories from your own experience were totally appropriate for this blog, and they really drew me in as a reader. I also think that you translated complex findings in an understandable way in your results section.

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  2. Great post Ray! Using stories from your personal experience was a great way to make the topic more relevant. This post is especially relevant since World AIDS Day is right around the corner. It may have been interesting to have noted this and to have added links to different World AIDS Day activities. I am actually part of the HPTN, so let me know if you are ever interested in chatting more :)

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  3. Hi Ray,

    I really enjoyed how your post flowed. It felt like reading a well-written story. I agree with the previous comments in that opening with a personal and relevant experience was very effective. I would have replaced HPTN 052 in the title with a more understandable term but otherwise, great post!

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  4. Hi Ray,
    Great post! I agree with others, I liked the personal tone of the blog. I also liked the reminder that we can't forget what AIDS looked like 20 years ago. Well done!

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  5. Hi Ray,

    I agree with the other commenters -- your tone is very different from many of the other posts, but just as accessible, and it is of course appropriate to your topic. I also agree with Danielle -- a mention of World AIDS Day would have made your post seem more timely and relevant.

    One small oversight -- you mention the Ryan White Act, but don't explain it fully. It would help to briefly educate your readers who may not know what this is.

    Since you start out so personally, it would be nice to see you conclude in a similar way. Perhaps address your audience, and let them know what test and treat means for them or somebody they care about. How do we continue to fight stigma? How can we lobby to fund ARVs in other countries, or the Ryan White act at home?

    Overall very nice.

    Becca

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  6. I love the organization of your blog! Laying out our pathway of acknowledging and fighting HIV/AIDS starting from telling your personal experience really tells a good story that connects the readers.

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  7. Fantastic post! Your introductory paragraph really wrapped me into it. I love how you tied in personal anecdotes to make your post feel truly palpable.
    Thank you for addressing the caveats of HPTN 052. Many seem to view it as a magic bullet, but the cost implications are real and need to be discussed. I really like how you tied this in.

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  8. Hi, Ray. The intro to your post was a great reminder at how far we've come in the fight against HIV. I also appreciated that you tried to reign in some of the excitement about the results of the trial -- which is something that's been missing from much of the press surrounding the study. Great job!

    Adam

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  9. Nice job, Ray. You did a good job of highlighting the evolution of the epidemic over the past 30 years in the context of exciting new prevention methods.

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  10. Hi Ray,

    Very interesting post, especially in how personal you made something that is often talked about in terms of numbers without faces.

    I agree with the comments above regarding the use of HPTN 052. I think that might be confusing for a lot of folks, so I might just refer to it as a "landmark study" and also leave it out of the title (although it depends on exactly whom your audience is for this post.)

    Last, I would like to see that personal element come back in to the end of the post regarding exactly what your average person should do as a result of this study.

    Overall, really nice work in making this read like a story and sound very accessible!

    Ariela

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    1. Ray, you’re such an amazing story teller! I love the narrative style of your writing; your stories really touch my heart. I feel that I understand you more deeply, your passion and your pride.

      I agree that we should remain cautious optimistic on HPTN 052. It reminds me of what Dr. Pisani said in her Ted Talk, “people do stupid things; that's what spreads HIV.” People’s stupidity, in her context, is manifested not only in the risky behavior of individuals, but also in the irrationality of health policy and the system. New science and technologies are there, but translating them into action to save lives, we do have a long way to go. And as a PhD student in health policy, we surely can think of something to do about it.

      I recently learned that injecting drug users (IDUs) are the only behavioral risk group experiencing a continuous increase in the incidence of HIV during the 21th century. Given your research interest in HIV/AIDS, Zach’s in harm reduction and mine in substance use treatment, let’s try to figure out some research project to which we can bring our expertise together.

      Hefei

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  12. Hefei,

    Big thanks for the comment and I definitely think that working together on something related to harm-reduction/drug dependency/risk-behavior is a great idea. A few years ago, I worked on a project headed by former Mexican President, Ernesto Zedillo, with regards to providing a public-health approach to the 'War on Drugs' and its impact on reducing the demand for illicit substances.

    It was quite interesting to see things through President Zedillo's perspective--he has worked a lot with former presidents of Brazil and Colombia on this issue and has a wealth of knowledge. My work with him really allowed me to have a better understanding of the punitive measures taken towards drugs and drug users in the U.S. and in other parts of the world (most recently Thailand).

    I look forward to discussing more about this issue in the future with you and Zach.

    Thanks again!


    -ray


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  13. This is really well written. I very much appreciate the respectful but intimate tone. Your personal story at the beginning really makes the reader feel like you are speaking to them one-on-one. I remember when AIDS was the scary thing in grade school that no one talked about unless it was to abuse another.

    Though longer than other posts, but I was happy to read to the end. Something short would be a coarse way to end a topic you delicately introduce. So, nice job taking your time to tell a complete story, without giving an exhaustive history of the disease.

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