A year ago, specifically on April 6, 2019, I made the controversial decision to publish my drug holiday. I’ve been on medications since 5 months old, never stopped until 2015, when I was 19 years old. That means, 18.5 years consistently medicated. I say controversial, because it is a topic that even within the activist community is still a taboo, hence I received some negative reactions from various activists about how it was possible for me to promote abandoning the medication, there were also many friends who spoke to my mom and ask her about my health, which I really appreciate. However, my real surprise was the empathy by people with HIV, whether they were born with it or not, was much bigger than I expected. The conclusion that I reached with the reaction of the voluntary drug holiday is not so much rebellion, nor lack of information, but rather pure exhaustion.
Reciting the story that my mother always tells, when I was 6 years old, I had trouble swallowing the pills so I started taking Kaletra oral solution, the liquid form. One day when I was getting my daily dose, I flatly refused to take it saying “I don't want to take this anymore because it tastes horrible! My tongue gets numb after!” Crying rebelliously denying I would ever take it again. My mother, to make me take the liquid medication, brought the spoon with the liquid to her mouth and appeared to take it with a “Hmmm, it's delicious Keren!”, While I looked at her with my arms around my waist with a serious look and asked her “Does it taste good mommy?”, To which she replied “yes my love, it’s delicious”, so I challenged her by saying "Take it all then, I want to see it." So, my mother in disbelief put a spoon full of liquid medication into her mouth in front of me, immediately after, she ran to the kitchen to spit it out in the sink. To this day she continues to say that it is the most horrifying thing she has ever tasted. If an adult still keeps saying that, can you imagine a 6-year-old girl?
After all these years, I’m not alone on the exhaustion of waiting for something better, we are tired of the same daily routine, tired of our quality of life being controlled by something so tiny as a 20 mm pill, tired of fighting for the same thing for so many years and always hearing the same answer " We don't know yet. " We recognize the great advances that have been made in science regarding ART, PrEP, PEP and vaccines, these are very big steps, but we are not satisfied. And even years later I keep asking myself: When will the cure come out? Or else, will the cure ever come out?
I reiterate, the cure is a clinical, social and political demand. It frees us from the possible advanced development of HIV and at the same time from stigma, fear, discrimination, criminalization, taboos and pressure. But above all, political so that Governments do not make us invisible. Once someone said to me, "I question the vaunted concept of adherence when our health systems and policies are the first to break it", how can we know that our quality of life is assured when the COVID-19 pandemic highlighted the emergency of inequalities in an already precarious health system? Over the next 12 months, deaths from HIV, TB and malaria could almost double as health systems are overwhelmed, treatment and prevention programs are disrupted, and resources are diverted[1], it's a very scary information to read and everything that has been advanced in HIV political activism could go backwards.
The new normality that the pandemic establishes made us rethink the strategies, the responses, the financing, the participation and even the cure for HIV. We cannot wait for the cure to be ready in the coming years when there are still serious concerns about a shortage of drugs, 73 countries have warned that they run out of stocks of antiretroviral drugs[2]. Ultimately, progress towards global goals is stagnating.
Earlier this month, July 2020, halfway through the expected COVID-19 vaccine, the news of the Sao Paulo Patient, the third person cured of HIV, came to light, but unlike the first two, this did not require a bone-morrow transplant.[3] When the case was in the media, there were numerous people in my messages asking me with enthusiasm if the cure had already come out, unfortunately I had to switch off their emotion saying that it’s only results of a study and that there is nothing confirmed, just good speculations. The uneasiness for the cure is noticeable, heard, felt, fought, but for how much longer?
More time was added to the clock due to the economic, psychological and political depression that we are going through, with a very uncertain path and planning strategic actions becomes more complicated. How can we plan if we are paralyzed and when we can move, do we do it the other way around? But we are sure of something, we must not forget to put the cure on our political agenda. That cry is never going to stop, we no longer want to live on medications, not knowing the long-term effects, nor do we want the claim to be forgotten because ARTs it’s not enough.
As for myself, I returned to the medication in November 2019, my adherence has been constant for the last 8 months, but I have not been able to do viral load and CD4 test due to the pandemic blowing on the health system. Hopefully, I will reach undetectability once again, although I won't know until another year, for now I will continue demanding the cure.
[1] Global Fund COVID-19 Report: Deaths from HIV, TB and Malaria Could Almost Double in 12 Months Unless Urgent Action is Taken, 24 June 2020 [2] WHO: Access to HIV drugs severely affected by COVID-19 and AIDS response stagnates, 6 july 2020 [3] Patient Is Reported Free of H.I.V., but Scientists Urge Caution, The New York Times, 7 July 2020
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