*** This 2020 “ Global solidarity, shared responsibility” is the motto of World AIDS Day, and this is repeated by three Venezuelans living with HIV to achieve a better quality of life.
Pedro, who wanted to be identified this way to protect his real name, faces several fears: the fear of contracting COVID-19 if he goes to a health center to seek his antiretroviral treatment, the uncertainty of whether he will get it, and facing stigma and discrimination.
This is the story of this Venezuelan, who in the midst of this coronavirus pandemic was trapped in the state of Táchira when the social quarantine was decreed on March 16, 2020.
Like him, some Venezuelans were confined in other states of Venezuela and, since they could not move around due to the lack of transportation, safe-conducts or gasoline, they adapted to the established plans to be able to receive antiretroviral therapy in other pharmacies of the public health system.
For Pedro, fear is constant. He hasn't had his viral load and CD4 count tested in over a year, and he doesn't have the money to pay for them at a private lab.
He is in San Cristóbal, Táchira State, where he has been since January of this year. Pedro is from Carabobo State and used to cross the border every 15 days to get to Cúcuta to pick up merchandise and then sell it in Valencia.
In the middle of one of these trips, he was stranded in San Cristóbal, when the restriction on movement was decreed.
He spent what little money he had on food and a room, where he stayed for three months, thinking he would return at the end of June. But things got complicated; now he needed dollars or Colombian pesos to pay someone to take him back to his home state of Carabobo. He heard about the truck drivers or vegetable vendors who leave the highlands every week and travel to the central and eastern parts of the country.
He was told that some of these vegetable truck drivers charged approximately $40 to take a passenger; but he had no money, no safe-conduct pass, and no PCR test to rule out coronavirus; one of the requirements to avoid complications at the countless checkpoints.
Furthermore, they told him he could expect to receive around $200 if any problems arose during his journey to Valencia. But he didn't get any of that.
Pedro was diagnosed with HIV in 2008 and has since undergone several antiretroviral treatment protocols. He commented that the quarantine destabilized him physically, emotionally, and in terms of his income, making it difficult for him to survive. Since January 2020, he has been taking a new medication containing tenofovir, lamivudine, and dolutegravir, or TLD. He noted that this regimen has not failed him so far.
Until 2017, his viral load and CD4 count were measured, thanks to the help of a Foundation in Valencia, Carabobo state; at that time it was undetectable.
He worked until October 2018 at a private insurance company as a systems analyst, but due to the economic crisis his salary was no longer enough to support himself, so he decided to dedicate himself to selling clothes.
Stranded in San Cristóbal with only 15 days' worth of medication, he became desperate. Setting aside the stigma still faced by some HIV-positive individuals, he mustered his courage and asked on the street where the STI/HIV-AIDS Program office was located. In San Cristóbal, it's housed in the Corposalud Táchira Health Unit. There, amidst his fear, he managed to obtain a three-month supply of medication.
He met one of the people receiving antiretrovirals at this pharmacy in San Cristóbal, where, after telling his story, he was kindly offered shelter and food.
—Thank God and the solidarity of another Venezuelan, who lives with this condition, for helping me. We both went through the same uncertainty about whether or not the medications would arrive. Thankfully, we are not alone and can support each other—
However, questions he asked me in the interview keep echoing in his head.
"How long will I receive treatment here? When will I be able to get tested to find out my viral load?"
He is plagued by more fears, including the possibility of returning to this health center and contracting COVID-19. Many are the fears that afflict a person living with HIV in Venezuela.
Like Pedro, in Caracas Miguel (not his real name) commented that he has been diagnosed with HIV since 2016 and until 2018 he took Atripla or Viraday, a compound of efavirenz, emtricitabine and tenofovir and now receives the new combined antiretroviral known by its acronym TLD.
He indicated that at Vargas Hospital, where he is a patient, he has received his treatment regularly without any problems, adhering to the biosafety protocols for the coronavirus. He told me that at this health center, they have designated two days a week for picking up his medication.
Miguel is afraid of getting coronavirus, and every time he has to go to pick up his antiretroviral therapy he gets very nervous.
–I feel afraid, especially because of my HIV-positive status, which makes us vulnerable to any situation and requires us to be very careful. I also don't know what my viral load might be, since the last time I was tested was a year ago, and I've heard that in a private lab the test could cost around $80 to $100–.
According to UNAIDS, as of December 2019, 38 million people worldwide were living with HIV, of whom 25.4 million had access to antiretroviral therapy.
Alexander (not his real name), an engineer by profession, has been living with HIV since 2016 and resides in Barquisimeto, Lara state. He recounted that 2018 was a very difficult year due to the shortage of antiretroviral drugs. He went eight months without receiving his Viraday medication, which led him to consider leaving the country at that time.
— I started thinking about what to do, since in March 2018 no more Viraday arrived and I only had a reserve until September 2018 of some bottles of pills that I managed to get through donations from friends and foundations — , he said.
In 2018 alone, more than 7,700 Venezuelans living with HIV/AIDS were outside their country and required antiretroviral treatment, according to UNAIDS. However, their website does not show updated figures for the latest Venezuelan migrants with HIV/AIDS who have left Venezuela during this coronavirus pandemic.
It's unclear where a person with HIV from Venezuela could emigrate to. Alexander, who has sought information on various websites and even asked others who have emigrated, explained that because his health condition is not public knowledge and he keeps it secret, facing society has been difficult for him: “It hasn't been easy for me. My family doesn't know I have HIV, nor do my friends; I have many questions that I would like help answering , ” Alexander said.
According to Master Plan for strengthening the response to HIV, tuberculosis and malaria, published in July 2018 by the Pan American Health Organization (PAHO) and UNAIDS with the endorsement of the Ministry of Health, until 2016 in Venezuela there was an estimated 120,000 people living with HIV, registering 6,500 new infections that year and 2,500 AIDS-related deaths.
The number of diagnosed cases in Venezuela increased, according to Global AIDS Monitoring, which indicated that as of December 31, 2018, a total of 164,605 people had been diagnosed.
According to monitoring carried out by Citizen Action Against AIDS (ACCSI) and the Venezuelan Network of Positive People (RVG+), a total of 1,406 people were diagnosed with HIV between January and July 2020, of which 1,310 were prescribed TLD by their treating physicians as initial treatment (first line of treatment), following the recommendations of the WHO, the Ministry of Health and the Venezuelan Society of Infectology, with technical advice from UNAIDS and PAHO.
It is worth noting that this year's motto for World AIDS Day on December 1, 2020 is "Global solidarity, shared responsibility," a message that is extremely necessary for those living with HIV in Venezuela to achieve greater commitment.
Among the conclusions of this Monitoring and navigation of access to HIV care and treatment / January – July 2020, it notes that a new batch of the antiretroviral TLD is expected, along with two alternative antiretroviral treatment regimens for those people with HIV who cannot take TLD, and 33,000 reagents for the viral load test to cover fewer than 50,500 people with HIV for one year, which have been acquired with the second extraordinary grant from the Global Fund for an amount of 6 million US dollars awarded at the end of 2019.
According to PAHO and UNAIDS, these medicines and reagents have already been manufactured and are on a waiting list to be transferred to Venezuela, once a plane can be found to help people with HIV in Venezuela.
Meanwhile, Pedro, Miguel, and Alexander, who share the same health condition, hope that the fear of living in Venezuela will end, with the uncertainty of not knowing if they will have access to antiretroviral treatment, be able to get viral load and CD4 tests, and find income to cover their basic needs amid the coronavirus pandemic.
Writing and interviews: Jorge Labrador