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HIV-positive people still live with fear and stigma

An HIV diagnosis is still a shock for many people affected. Thanks to medication, a halfway normal life is now possible. But the fear of exclusion makes life difficult for many.

Geneva (dpa) – When visitors are in the house, hide the medication. Making excuses to colleagues about regular check-ups with the doctor. In the parking lot in front of the HIV clinic, making sure no one sees you. This is the life of Anja, who learned in 2014 that she is HIV-positive.

“It’s like a double life,” the 41-year-old tells Deutsche Presse-Agentur. Exactly 40 years ago, on June 5, 1981, the U.S. Centers for Disease Control (CDC) first reported the mysterious new disease. Too little has changed in the discrimination that many sufferers have faced thereafter.

Fear of negative reactions

The mother of two small children from Hesse calls herself Anja. Only her husband, who is also HIV-positive, knows about her infection. She wants to remain anonymous. She is afraid of reactions, like the other day in the hospital, when she was brought in by ambulance with a broken bone and the paramedic yelled at her in the emergency room, where she stated that she was infected, saying that she should have said so immediately. She doesn’t have to, Anja knows. If the HIV infection is treated well, the viral load is so low that it is no longer detectable. This means that HIV-positive people cannot infect others.

According to a new survey by the German Aids Federation, a good half of HIV-positive people still experience discrimination. Just under 100,000 people were living with HIV/Aids in Germany at the end of 2019, with just under 11,000 of them unaware of it, according to estimates by the Robert Koch Institute. If an HIV infection is not treated, the virus weakens the immune system to such an extent that life-threatening diseases occur. This is known as AIDS (acquired immune deficiency syndrome).

Illness is often concealed

“People living with HIV are confronted with this problem every day: “Do I tell my employer, my friends, do I hide the medication from my children? What if I meet someone, should I tell them right away?” says Annette Haberl of the German AIDS Society. Prejudices also persist in the medical field, she said. “Finding a dentist can be difficult. And there is always the fear of rejection that accompanies people.”

Anja sometimes thinks about talking openly about her infection. “But when you’re treated as if you have the plague? If the children are then treated like lepers? For someone who has to fight such fears, that’s hard,” she says. “You’re so mentally unstable that that would be an imposition.” Despite the good medication, there is still the fear that the disease could break out.

Taboo makes it difficult to combat HIV

“Stigma and discrimination are one of the reasons why the HIV pandemic has not yet ended worldwide after 40 years,” virologist and AIDS researcher Hendrik Streeck, who most recently made a name for himself as a Corona expert, tells dpa. He speaks of a sad milestone. “We could contain the pandemic much better than we have.” In many countries, people infected with HIV or at increased risk of infection would have to live in hiding.

Many do not get tested out of fear and concern about the consequences, or there are few testing options, he said. “Thus, there are currently still too many infected people who can pass on the virus.” In Eastern Europe and in countries such as Egypt, South Sudan and Pakistan or in West Africa, the number of new infections continues to rise, he said. Particular risk factors include unprotected sex and sharing injecting equipment when using drugs.

Corona could facilitate HIV spread

The impact of the Corona pandemic on HIV infections is yet to be seen, Streeck said. In many places, he said, fewer people had gotten tested, and many had stopped getting their medications regularly. That could lead to many new infections, he said, and many people could become seriously ill.

How is it that vaccines against coronavirus have been developed so quickly, but not against HIV in 40 years? Different types of viruses are involved, says virologist Josef Eberle of the Max von Pettenkofer Institute for Hygiene and Medical Microbiology in Munich.

The coronavirus also changes relatively slowly, he adds, while the HI virus changes very quickly. “Already in four to six weeks, as many variants develop in a single HIV-infected person as in the coronavirus worldwide not in a whole year,” says Eberle. On the other hand, in the case of the coronavirus, antibodies can be “stuck” like stickers on the virus’ key to the cell, which prevents penetration. “With HIV, on the other hand, the surface proteins on the viruses are well hidden,” Eberle says.

Drugs can’t cure HIV

Once HIV is in the body, you can’t get it out – even if it can be well suppressed with drugs, the expert explains. The blueprint of the virus remains in long-lived cells. The coronavirus is different, he says: “It has to reproduce constantly, otherwise it dies out.”

Eberle doubts whether there will ever be HIV vaccines. Streeck is more confident. There are some HIV vaccine trials underway. “Of course, the HIV pandemic is better contained if we have a cure or a vaccine,” Streeck says. “But both are still a long way off.”

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