From a mysterious disease to a global threat

The first AIDS diseases were diagnosed more than 40 years ago – then there was neither the name AIDS nor precise knowledge about the cause of the immunodeficiency disease.

The pathogen, later named HIV, was discovered in 1983. To date, 40.1 million people have died from AIDS worldwide, but significant progress has also been made in fighting the disease.

On June 5, 1981, the US CDC reported a rare form of pneumonia in young homosexuals in California. It is the first official warning of AIDS – but at the time no one knew it was a new disease. In late 1981, health officials found the same infections in drug users, in mid-1982 in hemophiliacs receiving blood transfusions, and in Haitians who immigrated to the United States.

Accordingly, the “4H” disease is first spoken of, which stands for homosexuals, heroin addicts, Haitians and “hemophiles”, ie hemophiliacs. The name AIDS was coined in 1982 and is short for “acquired immune deficiency syndrome”.

In January 1983 at the Pasteur Institute in Paris, researcher Françoise Barré-Sinoussi and her colleague Jean-Claude Chermann, led by Luc Montagnier, isolated a new virus they call LAV, which they believe “could be involved” in AIDS. Their discovery will be published May 20 in the journal Science.

Barré-Sinoussi was experiencing a medical turning point at that time. The discovery of the life-threatening virus in 1983 led to a “race against time,” Barré-Sinoussi said in an interview with AFP news agency. “From that moment on we had a huge construction site”, because many open questions about the AIDS pathogen had to be investigated at the same time.

Given the many AIDS infections and deaths worldwide, there was little time to develop an AIDS test and find effective therapies for the immune deficiency disease. She and her colleagues should therefore have brought on board researchers from other disciplines and affected patients.

On April 23, 1984, the US announced that American virologist Robert Gallo had found the “probable” AIDS pathogen, a virus called HTLV-III. LAV and HTLV-III eventually turn out to be the same pathogen, which was named Human Immunodeficiency Virus, HIV for short, in 1986.

On March 20, 1987, the first antiretroviral therapy, zidovudine (AZT), was approved in the US. It is expensive and causes significant side effects.

On March 31, France and the United States sign an agreement to settle their dispute over the discovery of the HI virus. Gallo and Montagnier are called “co-discoverers”. However, the 2008 Nobel Prize in Medicine for the discovery only goes to Montagnier and Barré-Sinoussi.

American actor Rock Hudson became the first star to die of AIDS in October 1985. Queen frontman Freddie Mercury followed in November 1991 and ballet star Rudolf Nureyev in January 1993.

In 1994, AIDS became the leading cause of death among people ages 25 to 44 in the United States.

In 1995 and 1996, the introduction of two types of drugs marked a turning point in AIDS therapy: protease inhibitors and reverse transcriptase inhibitors (RTIs). This is the beginning of combination antiretroviral therapies, which have proven to be highly effective against HIV. In 1996, the number of AIDS victims in the US fell for the first time. Today, an HIV-infected person who starts antiretroviral therapy early has a life expectancy comparable to that of the rest of the population.

After the UN AIDS Program (UNAIDS) and five pharmaceutical giants signed an agreement in 2000 to distribute affordable AIDS drugs in poor countries, a compromise was reached in the World Trade Organization (WTO) the following year. Developing countries are now allowed to produce cheap imitations of AIDS drugs, the so-called generics.

American-born Timothy Brown has been cured of HIV after receiving a bone marrow transplant from a person who is genetically immune to HIV due to leukemia. After the case of the so-called Berlin patient, more such cures followed, but it was initially not possible to develop a regular HIV therapy as a result.

On July 16, 2012, the first preventive treatment against HIV was approved in the US. Administering an antiretroviral drug cocktail in the form of a tablet is a proven effective form of prevention for people at high risk of HIV infection.

In 2017, for the first time, more than half of the carriers of the HI virus received antiretroviral treatment. To date, according to UN information, the proportion has risen to about three quarters: according to UN estimates, 28.7 million of the 38.4 million infected people worldwide received appropriate therapy by 2021.

Due to the global spread of the coronavirus and the resulting restrictions, the number of new HIV infections and AIDS deaths in 2021 will exceed UNAIDS targets. Nevertheless, the UN organization maintains its goal of ending AIDS as a threat to public health by 2030.

In 2008, Montagnier and Barré-Sinoussi received the Nobel Prize in Medicine for their discovery. Researching the HI virus Barré-Sinoussi also changed his life in other ways. “In my early days I was a researcher who never left her lab,” she told AFP.

Later, however, she worked intensively with AIDS patients and experienced things “that I would not have thought possible – such as the public’s lack of tolerance towards certain population groups”.

“At that time, the sick were stigmatized by their families, their friends, sometimes even by health professionals,” the Frenchwoman recalls of the first years of the AIDS epidemic. “Some lost their homes, their jobs.” Through contact with AIDS patients, she “learned an enormous amount about inequalities, which have unfortunately become worse in today’s wealthy countries”.

Even after the AIDS pathogen was long proven, conspiracy theories persisted: the Soviet secret service, in its “Infection” operation, tried to make people believe that the pathogen was developed in a secret laboratory in the US. And the then South African president, Thabo Mbeki, at the turn of the millennium still claimed that poverty, not HIV, was the cause of AIDS – and denied the population access to medicines.

In the 1980s, a diagnosis of HIV was considered a death sentence. The first AIDS drugs had terrible side effects and those infected were stigmatized and marginalized. Advances in treatment make living with HIV possible today. On the occasion of the 40th anniversary of the discovery of the AIDS virus, AFP news agency spoke with four long-term survivors.

Paul Kidd actually wanted to get tested for HIV in 1986. But his doctor advised against the test “because there were no treatment options at the time and the political climate for people living with HIV was very bad,” says the 59-year-old lawyer and activist, who lives near Melbourne, Australia. It wasn’t until five years later that Kidd discovered he was infected. “It wasn’t surprising, since my ex-partner had died of AIDS in 1988. Still, the diagnosis was hard to accept,” Kidd recalls. “A lot of people I knew and loved died.”

Kidd was treated with AZT, the first HIV drug. “The side effects of AZT made me very sick,” says Kidd. But he owes his life to the pills. Now he only needs one tablet a day, which he tolerates well. “One thing that hasn’t changed much is the stigma around HIV, especially in certain regions,” he says. “Uganda and Ghana are headed in a terrible direction, and HIV-infected people in Russia and Eastern Europe are living much more difficult lives than I’ve ever had.”

Frenchwoman Pascale Lassus contracted the disease from her then-boyfriend in 1984. But she only learned about her infection by accident ten years later. “I was stunned,” says the 62-year-old retiree from Bayonne. “I had been leading a normal life – until my immune system went haywire.” The test was also positive for the six-year-old daughter. “The doctor told me she wouldn’t survive puberty. I was devastated.”

AZT was also the only available therapy for both of them – with terrible side effects. But things got better in 1995 when treatment switched to a combination of three drugs. “Today my daughter is 35 years old,” says Lassus. “And she could have a child who is HIV negative. A small miracle!”

Grissel Granados has lived with HIV all her life. Her mother became infected through a blood transfusion while giving birth to her daughter in Mexico in 1986. “She breastfed me and infected me like that,” says the 36-year-old, who now works for a women’s organization in Los Angeles. The family did not learn of the infection until five years later, when the father fell ill and died of AIDS soon after.

Her mother was pregnant at the time and was advised not to breastfeed at the time. “Fortunately, my sister is HIV negative,” says Granados. At the age of ten, she fell ill with cancer, but she considers her life “very healthy”. Granados criticizes that people who have been infected since childhood are too often forgotten or ignored when it comes to HIV.

Joël Vermont, from a suburb of Paris, discovered in 1992 that he had HIV. “I was 27. It felt like a building fell on me,” he says. During treatment with AZT, he lost almost 30 kilos. The new therapy with three preparations did not work for him. “Then I switched to alcohol,” says the 58-year-old.

“My viral load exploded. I developed lung disease and cancer, ended up in the hospital and was in a coma for 45 days. When I woke up again, I could no longer walk and one arm was paralyzed,” he describes his suffering story. “For years I heard that I was going to die. Then all of a sudden I was told I was going to live after all,” says Vermont. “I needed psychological help to accept that.”

(t-online/dsc)