OPINION: ‘Berlin Patient’ Timothy Ray Brown was an HIV hero

The Berlin Patient, Timothy Ray Brown – Image: theguardian.com

The ‘Berlin Patient’ Timothy Ray Brown, the first person known to have been cured of HIV, has died at the age of 54, from a recurrence of the cancer that prompted his historic treatment.

In 1995, Brown, an American, was diagnosed with HIV. Ten years later, he was found to separately have acute myeloid leukaemia (AML).

Dr Gero Huetter, a blood cancer expert at the University of Berlin, believed that a bone marrow transplant was Brown’s best chance of beating the leukemia. He also had a theoretical hunch that it may eradicate HIV too. It proved to be very smart.

The treatment involved the destruction of Brown’s diseased immune system with chemotherapy and radiation. Next, he had stem cells transplanted from a specially identified donor with a rare gene mutation called CCR5 Delta 32, which resists HIV. The hope was the stem cells would develop into a new immune system for Brown.

Brown’s first transplant in 2007 showed that the HIV seemed to be gone. But his leukemia was not. He had a second transplant from the same donor the following year that worked.

During the treatment, Brown, who became known as the ‘Berlin Patient’, nearly went blind. He became delirious and was almost paralysed. It took him 6 years to learn to walk again. He also took the risk of going off anti-retroviral treatment, to determine if he was indeed cured of HIV.

The treatment was also expensive, complex, and highly risky, thus not making it a possible viable cure for everyone with HIV.

After going through so much, Brown still came forward two years later because, as he said:

“I don’t want to be the only one to be cured.”

By doing so, he raised awareness of the advancements made in treating HIV, and brought hope to tens of millions of people worldwide living with the virus. We now truly believe HIV will, one day, be cured, and AIDS will end.

Over the last 40 years, we have so successfully demonised HIV that it has been hard to make a shift away from the idea that the 37.9 million people living with HIV are contagious, and that HIV leads to AIDS, which equals death.

Actually, modern medicine means that people with HIV can live long, healthy lives. But the world has nonetheless failed to unite to end AIDS, in the way that it is currently fighting to end COVID-19.

Almost 16 million people living with HIV, some of the most marginalised people in the world, cannot access life-saving medication. The world can do much more to stop them dying – but that requires urgency.

Meanwhile, stigma dehumanises those of us living with HIV. We are seen as damaged, as lesser, as lacking value. This stigma directly leads to mental heath issues. And it causes unnecessary deaths, as people do not access treatment, governments ignore the issue, and too many commit suicide or give up on treatment.

So the world must push forward towards a cure. Only then will millions be able to live their lives with full dignity.

Brown, who remained HIV-free until the end, can inspire us in this effort. A German/English translator, who founded his own charity in 2012 to work on cures for HIV, he spoke publicly about his experience, using his platform to raise awareness of HIV stigma, and to bring hope to millions.

Brown, who is survived by his partner, Timothy Hoeffgen, also encouraged generations of HIV doctors to fight on towards an endpoint.

He is a hero.

 

-Ash Kotak | AID:Tech

 

All views are the writer’s own. (Via Thomson Reuters Foundation)

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