A Different Point of View

The Drug Dilemma

Mixed within the walls of HIV treatment is the concept of public healtb. The term public health refers to the activities, programs, and policies of both public and private organizations aimed at preventing disease in people and promoting good health within communities (Frieden et al, 2021). The primary focus of public health is to increase and protect community health and well-being, with an emphasis on preventing disease and improving the quality of life among a population of people (ibid). A public health crisis is a difficult and complex public health threat that has the potential to overwhelm the community capabilities that are designed to address the problem (Nelson et al, 2007). There have been several public health threats that fit this description in my lifetime, including COVID-19 and HIV/AIDS. In fact, as amazing as it might sound, the AIDS epidemic began more than forty years ago. I was eleven years old when the first case was discovered in 1980. I remember being aware of it in my early teen years, but I didn't really understand it until Rock Hudson died. His death got a lot of attention, which put the topic of HIV/AIDS securely in the public discourse. Despite this, it was still viewed by many, including many government leaders, as a gay disease, and our government's public health response was lackluster, at best. It wasn't until straight people started getting sick from it that it got the attention it really needed, the kind of attention that got things done. The first drug approved to treat HIV in the United States was AZT. That was in 1987, and HIV medical treatment has come a very long way since then. When AZT hit the market, there were more than sixteen-thousand people living with the disease in the United States, and there were just as many who had already died (Maenza and Chaisson, 2016). AZT was somewhat effective at slowing the progression of the disease, which allowed people to live longer, but the side effects were so debilitating it prevented them from enjoying the life they were taking the drug to live. Today, the medication used to treat HIV is so effective it basically reduces the disease to a chronic condition, and it reduces the amount of virus in the body to an undetectable level, a level so low the virus cannot be passed from one person to another during sex. Because of this, it is recommended for everyone with HIV, regardless of their current health. This medication is not a cure. It does not kill the virus. It simply keeps it in check and prevents it from replicating, a necessary function for it to be able to attack the immune system. Unless a cure is found, those who use the medication will need to use it for the rest of their lives. Like any other life-long endeavor, the decision to begin taking this medication should not be taken lightly. The current approach for HIV treatment, give it to everyone whether they are healthy or not, is a one-size-fits-all solution that does not consider the gravity of this decision. It also does not consider the future health of some people living with the virus. In fact, for those people, it doesn't consider their health at all, and this is not the first time the HIV medical community has put forth a falsehood about HIV and the best way to deal with it.

What am I talking about?

The best way for me to explain it to you so that you will understand the full situation is to tell you a story about what I experienced that made me understand the full situation.

Turning Points

When I became HIV+ in 1996, the world was a much different place. There was no social media, no cell phones, no Internet. If you wanted to socialize, you had to do it in real time, which back then was just called real life. The world had been dealing with the AIDS crisis for fifteen years, and there was still no end in sight. The only medication used to treat the virus was AZT, and the quality of life of most HIV+ people was very low. When I tested positive, I did not have high hopes for a long and prosperous future. In fact, I silently began to prepare myself for the inevitable end result. At the time, I did not know I'd become a long-term nonprogressor. Wanting my quality of life to last as long as possible, I decided to wait until my health started to deteriorate before using AZT. I'm sure glad I did because the following year, HIV medication reached a major turning point. That's when a new class of antiretroviral drugs began to be used in combination with the drugs that had already entered the market. This combination of drugs became known as HIV drug cocktails, and they ushered in a new era of HIV, marking the unofficial end of the AIDS crisis and the unofficial beginning of the AIDS epidemic. Several similar turning points have been reached since then, leading to the current state of HIV medical treatment. Through all of these turning points, I have remained steadfast in my decision to wait before starting treatment until my body needs the medication to fight the virus. This seems to me a very reasonable thing to do.

I am very lucky to be a long-term nonprogressor, and I never forget how lucky I am. I have extensive blood tests done at least twice a year that allow my doctor to determine what the virus is doing inside my body. After 25 years, the virus has caused no measurable damage to my immune system or anywhere else in my body. I carry a viral load, but it is exceptionally low, hovering just above an undetectable level. My CD4 count is always higher than that of a healthy HIV- person. When AZT was the only drug available, long-term nonprogressors were not encouraged to use it unless their immune system showed signs that their HIV was progressing toward AIDS. In other words, they didn't use the medication unless their health required it. That makes sense, right?! Why would anyone use medication unless they needed it for their health? Since 1997, it has been much debated whether HIV medication provides a measurable benefit to long-term nonprogressors. There have been many studies, but none have conclusively shown that such a benefit exists. There is some indication that the medication can be successful in reducing the type of inflammation that could lead to cardiovascular problems, but there is no evidence that a person with HIV will necessarily develop those cardiovascular problems with or without the inflammation. The long-term use of any drug can have a negative impact on the functioning of the liver. It can actually cause liver damage. Because current HIV medication is so new, its long-term effects are not known. It is believed that they will not cause any long-term damage, but at this point, nobody can say that for certain. When Truvada hit the market, it was believed to be completely safe, but as time went by, it became clear that, for some people, it isn't safe. For someone whose health is deteriorating or would deteriorate without the medication, it is worth the risk, but for a long-term nonprogressor, it is not so black and white.

Good Doctor, Bad Doctor

Except for a few months in 2015, I've had the same doctor for more than twenty years. I got very lucky when I found this doctor. I had just moved to San Francisco, and my decision to add him as my doctor was like a shot in the dark. There is a large number of doctors who specialize in HIV care in San Francisco, but the care you receive can vary quite a lot depending on the clinic. Choosing an unknown doctor from this list of doctors can end up being a courageous act. I've heard horror stories about the behavior of many of these doctors. My doctor is friendly, down-to-earth, and open minded, and he genuinely cares about his patients. He gave me his home phone number not long after I became his patient. Apparently, he gives it to all of his patients in case there is some emergency and they need to contact him at an off hour. I've never had the occasion to call him at home, but I could if I needed to. Every appointment I've had with him has gone roughly the same way. He goes over my lab results, then we discuss HIV medication which is really a discussion about the many studies conducted to answer the question of whether or not a long-term nonprogressor really benefits from it. He has always recommended that I begin antiretroviral therapy, but he has also always understood my decision to wait. In the end, I was always healthy when I went to see him. On many occasions, he told me that I was his healthiest patient and to "keep on doing whatever you're doing because it seems to be working for you".

In 2015, I had to seek medical care elsewhere because of an insurance issue. I was very upset about leaving my doctor but remained optimistic about my medical care because I was able to go to Ward 86. During the AIDS crisis, Ward 86 was the first dedicated HIV clinic in the country, and today it remains a world-leading AIDS research institute. This clinic is infamous, known around the world as a top tier HIV/AIDS care unit. My first appointment was an intake appointment in which I discussed my medical history with a medical assistant who compared my goals with the goals of their doctors and suggested possible matches. When I told her I was a long-term nonprogressor who had never used HIV medication, she instantly suggested a doctor for me...but not just any doctor. She paired me up with one of the lead doctors at Ward 86, one of the most influential HIV researchers in the world. I knew who he was because he is an infamous doctor at an infamous clinic. He didn't usually accept new patients because most of his time was devoted to research, but she was certain he'd be interested in meeting me. I felt really good about being under his care and was very excited when my first appointment with him happened.

The intake lady had definitely been right about his interest in me. During my first appointment, he told me he had already contacted several of his colleagues around the world, and they were all very eager to examine my blood. He told me I needed to donate blood for them to do this. I think I could have said no, but he seemed so eager that I consented without really thinking about it. Then he asked me why I had never used medication. I explained my reasoning to him, the same reasoning I had explained to my previous doctor more times than I could count. I expected a reaction that was similar to the one I always got from my previous doctor, but that's not what I got. No, that's not what I got at all. When I finished my explanation, without even pausing to think about what I had told him, he said, "I know your previous doctor very well. We've worked together for many years. And I know without a doubt that he knows better than to allow someone to go so long without treatment."
.....Taken aback a bit, I had to think about how to respond. After very careful consideration, I said to him, "Huh?!"
....."It's time for you to begin treatment."
....."How do you know that? You haven't even looked at my medical history." I had to get my previous medical history printed on paper from my previous doctor and take it to my new doctor to be manually entered into their database. I had just handed him the documents.
....."Let's get you to the blood draw, and we can talk about this next time." I followed him down two flights of stairs to his research lab where a very friendly medical assistant took a huge amount of blood from me. She even had to change veins halfway through because the first one stopped giving a steady flow.
.....My second appointment was about a month later, and I was certain he'd have a different opinion once he reviewed my full medical history . He acknowledged that the tests done using the blood draw from my first appointment with him showed that I was healthy and that the medical history I'd given him showed that those results were very typical for me. In other words, he said I was right. But he didn't say he was wrong. In fact, he went right into a discussion about me beginning treatment. He already had his prescription pad and was writing a prescription. Maybe it was already written before my appointment. I asked him to explain his reasoning to me. Why did he feel I needed to start treatment so quickly? I got only a vague response that didn't really answer the question. It was clear to me that he was not comfortable with a patient questioning his medical advice. I was certainly not comfortable with a doctor not addressing my concerns.
.....My third appointment with him was a few months later. The primary purpose of that appointment was to assess how well the medication was working. I didn't start the medication, didn't even fill the prescription.
.....Shortly after the second appointment, I ran across an online article about HIV prevention that included a quote from my new doctor. In this article, he said. "We are at the point in the epidemic where there should not be any new infections because the current HIV medication prevents transmission of the virus." He then mentioned a program he was sponsoring called Getting to Zero, which had a single goal: to make San Francisco the first city in the world to achieve zero new HIV infections. Suddenly, it all made sense. He didn't want me to use the medication for my health. He wanted me to use it for public health. Or, more specifically, to make himself look better. To him, my refusal to use the medication was a threat to the goal of his coveted public health program.
.....I get that, from a public health perspective, it makes sense to encourage everyone who is HIV+ to use medication that prevents the virus from spreading. I also get that HIV- negative people can take the same medication and that it doesn't matter who takes it for it to prevent transmission of the virus and that it makes much more sense for HIV- people to use the medication seeing that it protects their health more than it does for an HIV+ person to use it if his health does not require it.
.....At my third appointment, I told him about the article I had read online, and I asked him point blank whether his insistence on me starting treatment was because of my health or public health. "Do you want me to use the medication because I need it to stay healthy or because it aligns with the goal of your program?" He completely avoided the question, became abrupt with me, and left after telling me not to bother making another appointment with him unless I start using the medication.
.....I never went back to see him because, as luck would have it, a couple of weeks later, my insurance issue was resolved, and I went back to my original doctor.

Worth the Risk

Because current HIV medication prevents transmission of the virus, it is marketed and prescribed as both (1) treatment for HIV+ people and (2) prevention for HIV- people. It is just as effective at preventing transmission when an HIV+ person uses it as it is when an HIV- person uses it. For most people who are HIV+, the drug has a very beneficial purpose. It keeps the virus in check so they remain healthy. For someone who is HIV-, the drug has a very beneficial purpose. It prevents them from becoming HIV+. Although the side effects of this medication are less severe and occur less often than previous medication used to treat HIV, approximately 10% of those who use it experience side effects that are so severe they have to stop using it, making these side effects the most common reason for stopping treatment (Home et al, 2018). Many more people experience side effects but not to the level that makes them stop using the medication. In addition to the side effects that manifest visibly, there are also side effects that don't manifest visibly, such as liver toxicity. My point is that, although the medication does miraculous things, it doesn't come without a physical cost. For someone who benefits from its use, it's worth the risk. For someone who does not benefit from its use, its value is not so clear. Current HIV medical guidelines calling for all HIV+ people to be placed on an antiretroviral treatment plan ignores the fact that long term nonprogressors don't need the medication for their own health, and its insistence on treating everyone the same, essentially calls for long term nonprogressors to use the drug not for their health but for someone else's health. When, in history, has there ever been a situation in which a certain part of a population were asked to use medication in order to keep a different part of the population healthy? It's un-American. The people putting forth these guidelines know it's not right. Consider how the doctor tried to keep from me his real motivation, beig vague and avoiding the subject to keep me from understanding his reasoning.

So, finally, I get to ask my question. Would you take a drug you don't need in order for the people you have sex with to be able to fuck without a condom when they can just as easily take that same drug?

Works Cited

Frieden, T. R., Rajkumar, R., & Mostashari, F. (2021). We Must Fix US Health and Public Health Policy. American Journal of Public Health, 111(4), 623–627. https://doi.org/10.2105/AJPH.2020.306125

Horne, Rob; Chapman, Sarah; Glendinning, Elizabeth; Date, Heather Leake; Guitart, Jordi; & Cooper, Vanessa. (2018). Mind Matters: Treatment Concerns Predict the Emergence of Antiretroviral Therapy Side Effects in People with HIV. AIDS & Behavior. 23(2), 489-498. DOI: 10.1007/s10461-018-2239-6.

Kuller, L., & Kingsley, L. (1986). The Epidemic of AIDS: A Failure of Public Health Policy. The Milbank Quarterly, 64, 56-78. doi:10.2307/3350041

Maenza, J. R. & Chaisson, R. E. (2016). HIV disease and its treatment: A Historical Perspective and Future Prospects. International Review of Psychiatry, 8(23), 167. https://doi.org/10.3109/09540269609046301

Nelson C, Lurie N, Wasserman J, Zakowski S. (2007). Conceptualizing and defining public health emergency preparedness. Am J Public Health. 97(1), S9-S11. doi:10.2105/AJPH.2007.114496

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