How to Survive a Miracle

This week, a baby from Mississippi was “functionally cured” of HIV after doctors treated her aggressively from the time of her birth with anti-retroviral medications. It's the first time a patient’s system has been cleared of the disease with a regular HIV treatment regimen designed to disrupt the ability of the virus to replicate itself. It opens the door for new research that could, theoretically, lead to a cure for AIDS. But while the breakthrough  illustrates how far we’ve come in treating the virus since it was first identified three decades ago, it's also a stark reminder of how little progress we’ve made in fighting the spread of the disease.

In the dark days of the 1980s, AIDS patients often found themselves turned away from emergency rooms by fearful hospital administrators, and politicians debated putting HIV-positive people into permanent quarantine.

The Oscar-nominated documentary “How to Survive a Plague,” which has recently been optioned by ABC for a mini-series, shows how advancements weren’t just the results of scientific research, but from the hard work of dedicated activists who pushed for drugs to be developed faster and distributed fairly. Instead of sitting back and letting scientists, drug companies, and government agencies control the agenda when it came to developing new and better drugs to combat HIV, activists made the relatively unusual demand of incorporating citizens with a direct interest—usually because they themselves had HIV—to be part of the decision-making process.

Without their activism, the disease, which affected largely marginalized populations like gay men and poor women, might have continued to endure mind-bogglingly high death rates that threatened to destroy their communities completely. As a senior editor at The Atlantic and former ACT UP activist Garance Franke-Ruta (who can be seen as a young woman in the documentary) explained recently, AIDS activists “helped change the drug approval and research process in this country, giving the entire world medicines that have saved millions of lives years before they might otherwise have been available or discovered.” She credits their success in no small part to the fact that HIV activism grew directly out of the already organized gay-rights movement, which was used to operating outside the American mainstream.

The first anti-viral medication to fight HIV, AZT, was approved in the U.S. in March of 1987. This helped, but it didn’t really do enough to reduce the symptoms or the amount of the virus in the bloodstreams, and its side effects made it unusable for many. The activist community kept the pressure up, and drugs were developed and approved at a relatively quick pace. Demands of AIDS activists grew more prominent as the virus started spreading through straight populations in a way it hadn’t before. The revelation that Magic Johnson, whose heterosexuality and athletic fame contrasted with the marginalized identities of most HIV patients, was not only HIV positive but was willing to fight with AIDS activists, was a huge symbolic breakthrough in helping push the issue forward in the days when it seemed good drugs might never come.   

The big breakthrough year was 1995, when the first protease inhibitor, a drug that squelches an enzyme HIV needs to reproduce, was introduced. When used in conjunction with other anti-viral meds that slowed viral replication, protease inhibitors helped millions of people who would have otherwise died rapidly go on to live full, healthy lives. Now, the typical treatment is to give a patient a cocktail of drugs that attack HIV replication by suppressing different enzymes. It’s so effective that it’s been known to bring people on the brink of death back to health.

The effects were dramatic. In 1995, the number of people who died of AIDS was around 50,000, up from around 7,000 a decade before. The very next year, AIDS fell from its perch as the biggest killer of Americans ages 25-44. In 1997, there was a 47 percent drop in the number of AIDS-related deaths from the year before. In 2010, nearly three decades after the “gay cancer” epidemic began, the death rate from AIDS was 15,529 people out of more than a million Americans infected with HIV, a 70-percent drop from 1995. It’s common for the amount of virus in people taking the cocktail to be so low that it doesn’t show up in tests. Before the cocktail was developed, a pregnant woman with HIV had a 25 percent chance of passing along the virus. Now only 2 percent of HIV-positive mothers do. A patient on medicine is less likely to transmit the virus to his or her partner. While there’s still no substitute for prevention, one HIV drug, Truvada, is even being prescribed to HIV-negative people who are at risk of transmission to reduce their chances of becoming HIV-positive.

Lack of access to these expensive drugs means that the rest of the world still lags behind the United States, but even in the countries where AIDS was most endemic, infection rates have fallen.  Worldwide, AIDS deaths peaked in 2005, at 2.3 millon a year, but are now down to 1.7 million a year and falling. President George W. Bush deserves much of the credit, having started a massive anti-HIV initiative called PEPFAR, the President's Emergency Plan For AIDS Relief, which started distributing HIV medications in 2003. The Mississippi baby isn’t event he first to be “cured:” Timothy Ray Brown, a German patient who got HIV in 1995, got there first, with a bone-marrow-transplant treatment that would be impossible to replicate on a large scale but nonetheless provides a possible path toward future treatment. Two more men are undergoing the same treatment with hopeful results.

But all this great news doesn’t mask an underlying reality: HIV has not gone anywhere, and it still alters the lives of the marginalized, the impoverished, and the abandoned. It’s not a surprise that the miracle baby comes from rural Mississippi. As this map demonstrates, the worst HIV transmission rates are heavily concentrated in the South.

The reasons for this are complex but not obscure: Poor sex education plus anti-sex hysteria leads to a culture where condoms aren’t used as much as they should be. Poverty and lack of access to decent health care means that less-healthy patients have trouble fighting off infection after an initial exposure. Infections are most common among populations that are marginalized, especially in the South. Statistics from the Centers for Disease Control show that  men who have sex with men are only about 4 percent of the population, but are the largest group of new HIV cases—78 percent, for a total of 29,800 new cases in 2010. Even though black people are only 12 percent of the overall U.S. population, they make up 44 percent of the people living with HIV, and that percentage is likely climbing. A black man in the United States has a 1 in 16 chance of being infected with HIV during his lifetime.

We don’t know much about the baby in Mississippi. We don’t know her race, her family’s income level, or much about her mother. But we do know that her mother didn’t get prenatal health care and that she disappeared after bringing her baby in for regular check-ups after 18 months. We also know that, for many of her fellow residents of Mississippi, not getting necessary health care is a result of poverty. While HIV-positive people with access to health care are getting drugs to extend their lives, others do not know they have the virus, do not get access to treatment, and can be spreading it to partners and children.

The AIDS activists who pushed for more and better HIV medications also demanded an end to the social and economic disparities that give the virus a chance to spread. They knew that it would take more than drugs to end HIV. They knew truly ending AIDS meant health care must be a right for every person, improve sex education must be improved, and above all, the country  needed to stop shoving some Americans to the margins, a place where HIV thrives. While everyone marvels at the miracle of a baby cured, it’s important to remember that it’s only because of our country’s failures that we still have infants with HIV to begin with.