It Could Have Been Me: World AIDS Day

Happy World AIDS Day!

24.9% of Lesotho’s population currently is infected with HIV. Think about that for a moment.

It is absolutely mind blowing to look around yourself at a meeting, party, football match, or funeral and think that statistically one-quarter of the people you are looking at have HIV.

Somehow, as I consider this, it does not shock me then that in one of my four years in Lesotho I had a possible HIV exposure.

Within minutes of my potential exposure to HIV, I was desperately trying to control the runaway adrenaline in my body as it caused my legs to twitch while rationally reminding myself through Google and memories from Peace Corps trainings that I still had ways to protect myself from the virus.

As I researched PEP-Post Exposure Prophylaxis, I struggled to contain my panic. Everything I read warned that PEP is difficult and has many side effects. There were many reports noting permanent liver or kidney damage. There were even more highlighting that patients were unable to complete PEP due to side effects and therefore would still end up HIV positive. Reading these reports, I was terrified and furious at the series of events that put me in this position.

PEP is actually one of two options available to prevent HIV infection. PEP typically consists of taking Antiretroviral (ART) medications for 28-30 days, depending on the type of medications taken, after a single incident of possible exposure.  The simplest explanation of how it works is that the ART medications prevent HIV replication in the body until all cells that may have been exposed die off.

The alternate option is for people at consistently high-risk exposure to HIV. This is called PrEP or Pre-Exposure Prophylaxis and consists of ART taken throughout the period of high-risk (e.g. having a long-term sexual partner who is HIV-positive). Scientifically, it works the same way that PEP does, however, the person must continue to take it correctly until a month after exposure risk ends.

Within nine hours, I was with the Peace Corps Medical Officer discussing PEP. We did baseline blood work centered around my liver functionality and current HIV status, which I already knew to be negative as I test regularly. Peace Corps Lesotho uses two medications for PEP, both prescribed for thirty days. 

Our Peace Corps Doctor’s no-nonsense approach to the situation and reassurance really calmed me down. She assured me that the medication is effective and that the side effects would not be too bothersome. Because Peace Corps Lesotho prescribes a combination of medication not used for HIV treatment in Lesotho, the likelihood of me having had contact with a strain of HIV resistant to the medication was virtually non-existent. I reminded myself of this rational explanation many times in the ensuing three and half months.  As I left the medical office, I mentally committed to being the best PEP patient possible. I set alarms on my Fitbit to ensure I took my medication on time, every time.  I cancelled all plans to drink over the thirty days to increase the efficacy of my medication and to decrease the risk of liver complications. This was atypically difficult as I had plans with fellow Peace Corps Volunteers and colleagues alike. Cancelling them meant admitting I was on medication, which I managed to do without letting people know what the medication was for.

Seventeen hours after my possible exposure, I began my post-exposure prophylactic ART regimen: Isentress and Truvada at 7pm with dinner and Isentress again at 7am with breakfast.

Over the next few days, I vacillated wildly between completely at ease with my newfound uncertainty and being a hypochondriac on the lookout for the terrible side effects the internet warned about.  I attended a workshop at a higher elevation than my usual activities. As my ankles and feet swelled, I convinced myself I was suffering from kidney failure and would need to switch medications, possibly decreasing the effectiveness of PEP.  Every time I thought something wrong with me was a dangerous side effect, I returned to the internet and scared myself some more.

On Day 21, I reached into my pocket to take my morning dose of Issentress and it was gone! I checked everywhere around me and the path I had taken, but it had disappeared. I returned to my room (I was at another workshop, this being the story of my professional life this year) and took a pill. I then spoke with both of Peace Corps’ doctors in person, over the phone, and via email, convinced that having one less pill at the end of the month would put me at greater risk of becoming HIV positive. They were prepared to open a new package of medication just to replace my pill, however, it turns out that the 30-day cycle is overly protective, and 28 days is the time needed for effective PEP. As a result, my 29.5-day course of medication would be sufficient. My focus at the workshop that day, however, was challenging while I awaited this information.

After I finished my medication regimen without real side effects, the waiting period began. HIV has a window period of up to three months before it will appear in a test. During this time, if present, the virus is replicating nonstop and literally taking over the body. The immune system cannot detect that the virus is present and therefore neither can HIV tests.

Despite knowing this, I was eager to test as often as I could. I was tested six weeks after my potential exposure through both a rapid test and a lab test. Both came back negative.  

During the next two months, I was busier than usual, sleep-deprived, and traveling constantly. As a result, I had a long-lasting mild cold. I tried not to let myself dwell on this as a symptom of decreased immune function as I waited for my next opportunity to test.  Every time I saw my own blood, I couldn’t help but wonder if it was dangerous to others.

Finally, three and a half months after my possible exposure, it was time to test again.

My doctor decided to skip the rapid test and only do a laboratory test. Although this meant I had to wait another day for the results, it also was more likely to be accurate. It also made receiving my results via email the next morning thrilling as 

My emailed test results. The Peace Corps Medical Officer was as excited about my results as I was!

Whew! What a relief!

From the time of my potential exposure, I could not help but think about how I might react if I had contracted HIV.

Prior to receiving my results, I rationalized myself to a place of acceptance. I had taken ART successfully for a month. If I was HIV positive, it would mean taking different medications as it would demonstrate that the HIV was resistant to Isentress and Truvada. At the same time, other than committing to taking medication daily for the remainder of my life, it would not need to lead to other major life changes.

Fellow PCV Danielle and I show off our HIV
Rapid Test results at Camp BRO.

Since 2014, I have been working diligently to teach people about HIV prevention, HIV transmission, and how to live a long and healthy life if one has HIV. At a BRO Camp in 2016, I publicly shared the results of my HIV test with the young men in attendance and was challenged by one of them; “Would you share those results if you were HIV positive.” My answer at the time was that I would share it with them, but even as I spoke, I knew that there were a lot of people I would not share such results with.

I believe that if I were HIV positive, I would feel confident sharing that status here in Lesotho. Stigma is still a problem here. It is a barrier to testing and to treatment. At the same time, everyone in this country has been affected by HIV. Despite stigma and discrimination being present, it is different that the stigma faced by those with HIV in the United States.

Before my time in Lesotho, I was ignorant of the dramatic improvements in HIV treatment and prevention. Thanks to ART, it is possible for people to be HIV positive and live long, healthy, productive lives. HIV positive women can give birth to babies who are HIV negative. Couples in which one partner is negative can conceive a child without the HIV-negative partner contracting HIV.

So, I believe that even if the ending were different, I would be sharing this story and this experience.  Although doing so with Americans would be a scary undertaking because popular culture and many politicians would have us believe that if someone contracts HIV, it is probably because they were engaging in “sins” such as unprotected sex or recreational drug use. We will politely ignore that one in five women in America experiences non-consensual sex during their lifetime.

This restricted view on HIV impacts access to health services for HIV. People with decent health insurance can typically add HIV testing to blood work being done. People without such coverage, however, can only access affordable testing services in limited locales and often testing services are at cost if available. In 2015, a small town in Indiana found themselves at epidemic transmission levels for HIV thanks to lack of access to testing services and opiate addictions among young people. Even in places with access to testing, many Americans do not bother to test for HIV. A recent report from the CDC noted that most Americans with HIV have the virus for an average of three years before learning their status. 

Treatment affordability is another issue. ART—Antiretroviral Therapy—is daily medication that suppresses HIV in the body. It not only has the ability to give an HIV-positive person better quality of life and a normal lifespan, but also to suppress the virus to the point that they no longer transmit the virus. The catch is that the HIV-positive person must adhere faithfully to their medication to ensure that the virus does not become resistant to the drug(s). These medications, unfortunately, are not inexpensive and affording treatment-especially for the underinsured and uninsured-is not possible on middle or low incomes. Not surprisingly, once present, HIV is a pre-existing condition, so without government protections, HIV-positive people really cannot afford insurance.

The theme of 2018 World AIDS Day is “My Health, My Right.”

With that in mind, I want to challenge readers to recognize their right and the rights of their countrymen to HIV prevention education and skills training, their right to confidential HIV testing services, and their right to treatment for HIV and HIV-related illnesses. It is deplorable that so many in the United States do not have access to these things and that even more take their right to health access for granted simply because the HIV prevalence rate is low.

Please, get educated. If you have a potential exposure-whether through blood, sexual fluids, or breast milk-you need to know to ask for PEP, not allow ignorance to put you in jeopardy.  Do not avoid testing because “ignorance is bliss”. While learning a positive status is obviously difficult, starting ART as soon as possible is the best way to ensure a long and healthy life despite the presence of HIV. HIV positive people taking ART also dramatically reduce the likelihood they can pass the virus on to others. 

Also, consider taking twenty minutes to enjoy this Moth podcast featuring a story of an American woman with HIV and a story from a Mosotho man taking an HIV test. It's worth the time!