I Know What I Did Last Year: “My Summer of PEP”
Read the story of Bojan Arsenijević’s (NGO Re Generation, Serbia) influencing experience about taking PEP, or post-exposure prophylaxis, which represents a combination of antiretroviral drugs that minimises the possibility of infection after accidental exposure to a potentially infectious material.
Another 1st of December went by, one of just a few days during the year when you can read or hear a story about HIV in Serbia. Every year on this day, data from the Institute of Public Health is released, with this year’s reporting 105 new cases, with a total of 3585 patients that have been affected since the onset of the epidemic in 1985, of which 1884 have AIDS. I am finally using this opportunity to write the article that has been on my mind for more than a year.
Ever since the onset of the HIV epidemic in the early 1980s, people living with HIV have faced various stigmas, including problems, accusations, and rejections, even by professionals from different institutions and NGOs which are supposed to work with people living with HIV.
I like to think of myself as a rather liberal person, with a full understanding and justification for personal actions and decisions of people, however, I often criticised PLHIV for refusing or stopping ARV treatment, as I believe this to be irresponsible towards yourself, to your health, but also to the National Health Insurance Fund that allocates significant amounts of money for medicines.
I considered the stories of adverse side-effects an excuse, justifying the decision for treatment interruption, but I clearly remembered them. And then, last year, a young patient during the medical consultation, stung me with an insulin pen, which she found in the trash. Despite my surprise, concern over the possibility of infection did not cross my mind. Although the majority of people around me were worried, my first and only thought was “Oh no, I’m going to have to take PEP now.”
PEP, or post-exposure prophylaxis, represents a combination of antiretroviral drugs that minimises the possibility of infection after accidental exposure to a potentially infectious material. In the organisation for which I worked at the time, according to the protocol for PEP therapy, a combination of three drugs was taken: Tenofovir, Lamivudine and the combination of Lopinavir/Ritonavir, for a period of twenty-eight days. In addition to my two hypertension medications, this represented a serious pile of medications that I had to take every day. I do not remember the first day, except for headaches. I swallowed the eight tablets I was supposed to take in the morning, and read the declarations of all three drugs with the hope that I would not have many side effects from an enormous list of the most diverse, undesirable effects, and went to work. Of particular concern was that many side effects were common to all three drugs.
The situation worsened the second day. Each meal was followed by nausea and terrible abdominal pain, similar to appendicitis, accompanied by a cold sweat, and after about twenty minutes ended with a diarrhoea. After a few days I just stopped eating. Maybe I would have some soup, but that would be it. Headaches were constant, and I stopped paying attention to them. The greater problem for me was malnutrition, the cause of which is unclear to me now; it was either the medication or the absence of food. Since I did not eat anything, I couldn’t take any of the symptomatic medicines that would make it easier for me. When I was asked how I felt, I would most likely answer “as if I had just survived a deadly illness, and this is the first time I got out of bed,” and that’s how I really felt.
The last ten days of the therapy were easier for me. I probably got used to it, though I ended the therapy twelve pounds lighter on the twenty-eighth day, but also richer for one unexpected experience.
This new experience caused a deep sense of guilt because of my critical attitude, and the need to apologise in a way to all my friends living with HIV.
In order not to write only about my experience, I talked with my colleagues who are also medical workers. Each one of them over a lifetime, one or more times, had some kind of incident with a non-sterile needle, but only three of us, all employees of international medical NGOs, used PEP. One colleague refused therapy, at his own risk. Employees in state institutions still do not have this possibility, that is, therapy is available to them, but they are not covered by the Health Insurance Fund, and they must buy it themselves, which amounts to more than two average nurse’s wages in Serbia and cannot be bought over the counter at the pharmacy. Pharmacists were very helpful when they heard what medicines I was asking, and offered plenty of advice, but it all came down to only a few pharmacies in the city. Some of the colleagues have not even heard of the possibility of using PEP. Even the vaccination against the Hepatitis B virus, until it became mandatory, was rarely represented among medical staff.
In addition to my colleagues, I also talked to some friends who have been taking the therapy successfully for years. Some of them are purchasing it themselves, some through official channels. They generally agree that the condition is much better now – four new drugs have been introduced in the last four years, and through various channels it is possible to obtain most of these drugs, meaning there is the possibility of several different combinations. Emtricitabine/tenofovir alaphenamide (Descovy) is still not available in the market, and nor are any combination of more drugs in one tablet, which is both psychologically and physically much more pleasant for the patient. One of them was quite surprised when he heard about the combination of the drugs I was taking and told me that some of them were out of use and that I should change the therapy. Interested in this story, I looked at the guidelines for taking PEP in both of the organisations where the three of us who were using the PEP worked, because we all used the same therapy. It turns out that this combination of drugs that we were taking does not appear in any official document.
In addition, the absence of PrEP, a pre-exposure prophylaxis most often used in the case of unprotected sexual intercourse with a partner who has HIV, is striking. More precisely, except Vice Serbia, who in two exceptional articles (here, and here) presented the appearance of Truvada and PrEP in Serbia, it is not possible to find even a document in Serbian about PrEP.
In the mentioned text on Vice, about PrEP therapy in Serbia Prim, Dr sci Mila Paunic, epidemiology specialist, Head of the HIV and STI Centre for Prevention of HIV and AIDS, said:
“I cannot say that I am absolutely for this therapy, but I do think that there are absolutely people who need recommendations for PrEP, and there are situations where it is necessary”.
It further expresses the hope that during the development of a new National Strategy against HIV/AIDS, the potential for raising the quality of life for certain categories will be recognised in PrEp, and therefore a part of the funds will be allocated in the budget.
In the consultative meeting organised by the Institute of Public Health in order to develop a proposal for a strategy for responding to HIV infection and AIDS in the Republic of Serbia for the period 2018 – 2025, there was a discussion on proposed availability of PrEP and PEP and key activities listed, but the first and most important step is establishing protocols defining terms of prescribing and use. Of greater concern is the general knowledge and availability of information related to possibilities and availability of PEP and PrEP.
Thirty-two years have passed since the registration of the first patient infected with HIV in Serbia. 1105 patients have died since then, the quality of life of patients who are on ARV treatment is improving, and quality and life expectancy have increased to the point for HIV/AIDS to be considered a chronic disease. More and more quality medicines are available on the market, and over time they are becoming available to the wider population, and improve quality of life of people living with HIV. The biggest obstacle is stigma, fear, mistrust, and prejudice, problems that are not solved by drugs, but problems that we should fight ourselves in our heads.
Bojan Arsenijević, NGO Re Generation
Originally published on Drugreporter: http://drogriporter.hu/en/know-last-year-summer-pep/