Journey Story

Making HIV Medication Affordable For All

by Sean R. Glenn

When it was evening, the disciples came to Jesus and said, “This is a deserted place, and the hour is now late; send the crowds away so that they may go into the villages and buy food for themselves.” Jesus said to them, “They need not go away; you give them something to eat.”––Matthew 14: 15-16

When I first moved to Boston in September of 2011, some nine months after my diagnosis with HIV, I was not yet on anti-retroviral medication. To be quite candid, I was afraid to start treatment.

Despite the incredible reduction of side-effects caused by anti-retroviral treatment, I was weary of the cost. 

Starting an HIV medication can be something of a life-long commitment; in order for it to work the most effectively, total (or near total) adherence is requisite, which means taking medication every day, as prescribed. Ceasing treatment often runs the risk of viral mutation and, therefore, resistance to medications. This was a proverbial plunge for which I was not yet ready.

Once established with a local HIV specialist, however, medication was prescribed to me. My previous doctor in New York City had leaned on an older model of care. His stance was to wait to begin an anti-retroviral regimen until a patient’s CD4 (or T-cell) count had dropped below about 300 (a count of 200 or fewer usually indicates the onset of AIDS). This meant that, in theory, I could have gone many, many years without beginning medication, depending on my body’s ability to handle the virus.

My provider in Boston, however, introduced me to the notion of “Treatment as Prevention,” a now-standard approach to HIV care. Treatment as Prevention relies on the now clinically verifiable notion that, in order to slow or even prevent the spread of HIV, a patient who is seropositive should adhere to medication so that the patient’s viral load is suppressed to undetectable levels, which is called an “undetectable viral load.”

Studies have shown that HIV-positive patients who adhere to medication and maintain an undetectable viral load are exponentially less likely to transmit the virus.

One researcher has even been quoted saying that the chances are reduced to near zero percent). With this knowledge in hand, I accepted my provider’s orders and began treatment. The results were almost instantaneous: within a month, my viral load was reduced from 20,000 copies per unit to completely undetectable levels. As a result, my CD4 count rose, and my last blood panel showed them hovering just over 850––a high, healthy CD4 count for anyone, positive or negative.

I, like so many others, now live with the reassurance that it is almost impossible for me to transmit the virus, especially when other precautions are taken. My adherence to anti-retroviral treatment is a safe-guard to the community, as well as myself.

This was the good news. The bad news, however, revealed itself when I needed to find a way to pay for treatment. When I started taking medication in October of 2011, I had to rely on student insurance. While I am now fortunate enough to have coverage through MassHealth, the Commonwealth of Massachusetts public insurance, I did not qualify for it in 2011 because the university had enrolled me with Aetna.

My insurance coverage through Aetna presented some major problems.

Not only did Aetna fail to adequately cover my doctor visits and blood work, they maintained a $2,000 yearly cap for medications. That might sound like a reasonable cap, but a 30-day supply of Atripla (the anti-retroviral medication prescribed to me) costs just over $2,000.

I’ll repeat that: a 30-day supply of Atripla costs just over $2,000. I was (and continue to be) fortunate enough to live in an area of the U.S. where there are many resources for someone living with HIV. Although it was, by no means, an easy feat to get my medication covered during the first year, thanks to the incredible medical social workers in Boston, I now have full coverage. This, however, is not the case universally, neither at home nor abroad.

Treatment can be hard to come by, and this often prevents those living with HIV from receiving adequate access to medicine–medicine which not only allows patient to live longer, but also prevents the spread of HIV.

We will never live in a post-HIV/AIDS epoch unless these life-saving medications become affordable.

Until there is a vaccine or a cure, Treatment as Prevention is the only sustainable model that benefits both the HIV-positive and HIV-negative communities. At a certain point, we have to ask ourselves (especially as communities of faith) how much longer we can allow the corporate profit made off of those living with HIV to outweigh the imperative that anti-retroviral therapy be made readily and affordably available to all, for the sake of all.

Medications do not simply save individual lives; they save communities. The Gospel pericope cited in the introduction serves as a cornerstone of this imperative. In this enacted parable, when faced with the hunger of 5,000 people, Jesus gives his disciples a command––he gives us a command: “You go and feed them.”

The responsibility here is not Jesus’; it is ours. The necessary resources are already abundant by God’s good grace, and we simply have to recognize that. But, in recognizing this abundance, we are also forced to ask where this abundance frequently ends up. Does our abundance serve the good of the community, or does it end up in the hands of a few?

The responsibility to care for our community is ours.

Let’s take Jesus at his word in this parable: “You go and feed them.”

Image via Mary Button’s Stations of the Cross: The Struggle for LGBT Equality