We're advancing to a cure after 30 years of HIV/AIDS treatment

Freddie Mercury wouldn’t die of AIDS now and neither would Ryan White. But quite possibly Nkosi Johnson would.

When Dec. 1 was declared World AIDS Day 30 years ago, the era of effective treatment was just beginning. Since then, HIV has come to be a chronic disease rather than a fatal one and largely preventable at that.

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If that’s true, why might Nkosi Johnson, the 11-year-old South African keynote speaker with AIDS at the 2000 International AIDS Conference in Durban, still die?

His fate may be different than that of Freddie Mercury, the exuberant and talented lead singer of Queen, immortalized in the global movie blockbuster, “Bohemian Rhapsody,” as well as Ryan White, the child for whom the American AIDS treatment program is named.

Asking this question squarely is critical to reaching the ambitious UNAIDS goal of ending HIV worldwide by 2030.

The brief answer is that in both prevention and treatment, people in Nkosi Johnson’s situation have been left behind.

To understand, it is important to see how Mercury, White and Johnson each contracted HIV and what they might have been able to hope for them in 2018.

Mercury is believed to have become infected through unprotected sex. He reportedly tested positive in 1987, acknowledging his illness only one day before his 1991 death at age 45. 

Were he alive today, although Mercury’s chance of avoiding infection in 2018 would not be zero, it would be much lower than in the past and definitely lower than in the 1980s. His improved odds would be partly because of increased knowledge about safe sex, but also because gay men in the United Kingdom (where Mercury lived) are now likely to be receiving effective treatment.

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When the virus is suppressed, transmission to sex partners is far less likely. Of course it’s not guaranteed that today Mercury would avoid the disease — in the more affluent countries of Europe and North America, 57 percent of those newly infected in 2017 were men who have sex with men.

White had hemophilia and contracted HIV from a tainted blood product. Diagnosed in 1984 and expected to live only six months, he went to court over his exclusion from school. He died at 18 in 1990, shortly before his high school graduation. If he were alive today, there is really no chance that Ryan would have acquire HIV now.

Around the time he became infected, 70-90 percent of patients with the most severe form of hemophilia acquired HIV from their treatments with blood products. Blood donations in the U.S. have been screened for HIV since 1985 and are considered entirely safe. 

Johnson was already infected at his birth in 1989 and, like White, faced prejudice and discrimination and had to fight for the right to attend school until his death in 2001. Today, in developed countries, just as HIV is not transmitted through blood products, it is also not transmitted from mother to child.

Pediatric AIDS is a problem of poor countries, not more affluent ones. To be sure, there has been some progress — although young women in Sub-Saharan Africa become infected at nearly three times the rate of young men, they are likely to be tested in pregnancy and offered treatment to prevent transmission. So Johnson’s odds of being born uninfected are better than in 1989, but he would not be home free.

Once infected, survival depends on the odds of treatment. And here again, Johnson would be disadvantaged. In 1990 and 1991 when White and Mercury died, antiretroviral therapy was in its infancy. Yet both lived in countries where the best treatment was available and both had people helping them secure newly-available drugs. What was then available was not enough to save them, but now, excellent treatment would be available to them and almost certainly their lifespans would not be shortened by HIV.

But what about Johnson? By 2001 when he died, effective treatments were understood and widely available; doctors had known for five years that only a cocktail of antiretrovirals could forestall death.

At the time, though, many South Africans were barred from treatment because of their government’s denial of the relationship between HIV (the virus) and AIDS (the disease). Indeed then-President Thabo Mbeki walked out of the AIDS conference during Nkosi’s speech.

But even today, in poor countries children like Johnson fare poorly compared with adults. In 10 Sub-Saharan African countries, more than half of HIV positive adults received treatment. Yet in only one country were more than half of children receiving treatment. In South Africa, for instance, although 45 percent of HIV infected children receive treatment, less than half of them are treated effectively enough to be virally suppressed.

Children in poor countries fare worse compared with other groups generally because pharmaceuticals are developed for and tested in adults before becoming available to children.

Adult AIDS patients in poor countries can benefit from research programs designed by and for people in rich countries, but because pediatric AIDS is a poor-country phenomenon. Children like Johnson have no rich-country counterparts.

In addition, consent protocols for both treatment and research were designed for adults and do not translate well to the uncertain custody arrangements of often-orphaned children with a stigmatized disease.

Finally, information about how to treat pediatric AIDS diffuses especially slowly because it is done only in poor countries where researchers often lack the resources to produce data up to the standards of mainline journals.

In my team’s research at Northwestern University, both Thai and Ugandan doctors studying pediatric AIDS complained that journals were either uninterested in their findings or rejected their papers because they had been unable to measure expensive viral loads, the journals’ preferred indicator.

Without adequate medical research and donor support, children like Johnson will continue to die.

In his eloquent plea to the world on behalf of children with AIDS, Johnson said: “Care for us and accept us — we are all human beings. We are normal. We have hands. We have feet. We can walk, we can talk, we have needs just like everyone else — don't be afraid of us — we are all the same!”

Carol A. Heimer is a professor of sociology at Northwestern University and research professor at the American Bar Foundation and a Public Voices Fellow of The OpEd Project. She is a sociologist with expertise on the global HIV epidemic.