Caracas Chronicles

Photo: Daniel Hernández / EFE

“I used to have a normal life with antiretrovirals. When they first went scarce, I was very afraid. I didn’t want my folks, who didn’t know I have HIV, to see me get sick and die. That’s why I chose to leave.”

“José” (he’d rather protect his identity) moved to Spain in 2016, following his physician’s advice. He’s stable over there, and although his family misses him, they never found out about his woes.

Along with him, at least 8,000 Venezuelans that have been diagnosed with HIV-AIDS have emigrated, according to Michael Sidibé, executive director of OnuSida. Eduardo Franco, secretary of Red Venezolana de Gente Positiva, RVG+, says the number is larger than that. He says the number of HIV+ patients that have left is 10,000.

Marked for Life

People with HIV-AIDS don’t have it easy in any corner of the world. Discrimination always appears. But in Venezuela, you also have to deal with the shortages of antiretroviral medicine, the healthcare crisis and the lack of an adequate diet.

At least 8,000 Venezuelans that have been diagnosed with HIV-AIDS have emigrated, according to Michael Sidibé, executive director of OnuSida.

Maybe some managed to stand the discrimination these past few years. They even rode out the way they were mistreated because they were HIV+, even if it’s the medical staff’s duty to safeguard the life of every citizen, no matter how they come into the ER. Before 2014, patients would swallow discrimination, which ended in humiliation many times, because they at least had access to antiretrovirals, handed out for free by the Health Ministry. Since 1998, thanks to a lawsuit introduced by patients and doctors to the Corte Suprema de Justicia (now the Supreme Tribunal of Justice), every citizen carrying the virus has the right to access antiretroviral treatment for free, in authorized institutions across the country.

And that’s how it used to be. They would take their pills and have normal lives, with their partners, children and jobs.

But in 2015 the debacle started. The Venezuelan government didn’t take action in disease prevention and didn’t do the shopping; out of 30 antiretroviral medicines available back then, 14 were already missing. According to Red Venezolana de Gente Positiva, this contributed to the deaths of 6,000 people in 2018. Officially, it was 2,032.

Up to July 30th, 2019, Franco says, the number of deceased in the register of RVC+ is over 3,000.

In Search of Meds

Since November 2018, those with multiple resistances haven’t received some antiretrovirals, so they’re forced to leave the country. In a stampede.

Among them is Vicente. When he moved to Bucaramanga, he’d been without treatment for a year. He, his partner and their cat left Caracas in December. When they arrived to San Cristobal, some National Guards wanted to take the cat, saying it had drugs inside. They had to pay a vacuna in U.S. dollars. When the officers found out that they were a couple, they began to touch and mock them. “In the end, they took more money, like they did with the other passengers. It was a relief when we got to Colombia,” Vicente says.

He was diagnosed in 2016 and received treatment regularly until the end of 2017. Then, because of shortages, his treatment plan was changed, but it didn’t arrive either. In order for him to have a lipoma removed from his back, he had to forge his HIV test, because in the hospital where he was being treated, José Gregorio Hernández de los Magallanes de Catia, they stalled the surgery for over a year because of his HIV infection.

Vicente’s partner did research on the internet for organizations that might be able to help them and he made appointments for two. That kept them on a positive vibe once they left behind the abuse of the Venezuelan military, and they moved forward to Norte de Santander. In Bucaramanga, they were received by the Defensoría del Pueblo (Public Defense) and linked to the Health Secretary and ACNUR, where they began the paperwork to stay legally and have access to the public health system. They’re also helped by the AHF foundation, that takes care of 1,150 HIV+ Venezuelans in Cucuta, providing them with antiretroviral treatment plans, regular checkups and screening for opportunistic diseases. In the entire Colombian healthcare, there are 1,800 HIV+ Venezuelans registered.

Vicente had tuberculosis at the end of January. Without treatment and a low immune system, he quickly got infected by the bacillus. But without having all his tests ready, they gave him the medicines anyway. Between February and July, he lost 12 kilos; he’s had his fourth consultation in Cucuta and his levels are back to normal. In Venezuela, he wouldn’t have access to treatment for TB or the CD4 count and viral load. The fourth generation Elisa tests aren’t available anymore to detect HIV, meanwhile RVG+ estimates that there were over 4,000 new cases in 2018.

According to Red Venezolana de Gente Positiva, medicine shortage contributed to the deaths of 6,000 people in 2018. Officially, it was 2,032.

TB was included in the Master Plan written by the Health Ministry, OnuSida, the Pan American Health Organization, the Red Venezolana de Gente Positiva, and the Sociedad Venezolana de Infectología (Venezuelan Society for Infectious Diseases). The World Fund Against HIV-AIDS, Tuberculosis and Malaria gave $5 million for antiretroviral medication; the Venezuelan government was supposed to contribute with $28 million to fund the rest of the program.  One year later, it hasn’t.

The antiretroviral drugs that Vicente takes in Colombia, are made in Poland and are sent by Brazil as humanitarian aid. “In two months, my virus was undetectable again, the CD4 tripled and the viral load was gone.” In Colombia, all the paperwork he’s done has been free of charge. He only pays the travel fees from Bucaramanga to Cucuta, when he has to go to checkups.

The Double Pressure

Now Vicente prepares himself for work in Bucaramanga, where he says the discrimination and phobia towards HIV isn’t so bad. He plans on heading south, where there are more infected Venezuelans: Eduardo Franco says that in Peru there are 1,456; 892 in Ecuador; over 900 in Chile; Mexico has 872; 625 in Argentina; and 700 in Brazil. He acknowledges that these numbers aren’t official, and he lacks a record for other countries. Many became illegal immigrants or don’t have a passport, so HIV+ patients might be dying without treatment.

OnuSida says that 30% of new infections in Chile have come from migrants, and the Dominican Republic spent $1.5 million on foreign HIV patients in 2016, most of them Haitians and Venezuelans. Panama also has Venezuelans with HIV in their free therapy programs. This exodus is beginning to upset other countries that get help from their governments and organizations like Aid for Aids, AHF and Icaso.

But that’s not enough, especially with things getting worse in Venezuela. Of the 65,855 people with HIV-AIDS, less than 30,000 are taking TLD (Tecnofovir, Lamivudina, Dolutegravir), the new medication that came in with the Master Plan protocol. Of those, 10% can’t go on to the new TLD because they are multiresistant.

If you look closer, things only get worse. In the state of Lara, Acción Ciudadana contra el Sida has just denounced that there are no retroviral drugs or TLD: 2,200 people with HIV are not receiving treatment. The Programa Nacional de Sida (AIDS National Program) didn’t send the medication.

There are also children with HIV that don’t have access to formula since last year, except those coming through private donations, and they haven’t had the necessary medicine, Kaletra, for four months.