One of the big stories of the week is about a two-year-old girl from Mississippi who has, according to researchers, gone from being HIV-positive to not HIV-positive. If this finding is confirmed by further analysis, this would be only the second time HIV has been eradicated from a person’s body.
There are some scientific questions about the details of this case and whether the success could be replicated on a large scale. But an equally important question, in my mind, is whether we do more harm than good when we bandy about the word “cure” in a case like this.
The first time HIV was apparently eradicated from a person’s body was in the case of Timothy Brown, an American living in Germany who received a bone-marrow transplant as a treatment for leukemia. The blood cancer expert who was working on his case searched for a donor with a rare genetic mutation that is resistant to HIV. This mutation is present in about one percent of Caucasians. The mutation apparently prevented the return of infection after the bone marrow transplant. Though researchers in California have found trace amounts of HIV in his tissues, Brown and his doctors say he remains HIV-free and that “any remnants of the virus still in his body are dead and can’t replicate.”
In the more recent case, doctors began intensive drug therapy on an infant born to an HIV-positive mother within 30 hours of birth. The mother had received no prenatal care and therefore had not received the drug therapies she would have needed to prevent mother-to-child transmission of the virus. The baby’s physicians decided to start her immediately on a combination of three anti-retroviral drugs. The baby remained on this triple therapy for about 18 months and then disappeared from the system when her mother stopped going to the clinic. When the baby returned at the age of 23 months, she had no detectable virus in her blood stream, despite having been off of the medication for five months.
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How Big a Breakthrough Is This?
There are a few questions remaining about this case. Some scientists have questioned whether the toddler really was HIV-positive as an infant or if, instead, “the positive tests simply registered small amounts of the virus that had spilled over from the mother’s bloodstream during delivery.” If that is the case, this would not be a cure, but a successful case of post-exposure prophylaxis—a great outcome for this child, but not a new development. Her doctors have rejected that possibility, saying that special tests done days after her birth show that she had replicating virus in her bloodstream. The tests cannot be repeated as confirmation, however, because her doctors, who didn’t realize what would happen in the case, did not store the blood.
The doctors believe that by starting intensive drug therapies early, they were able to prevent the formation of so-called viral reservoirs—memory T cells where HIV “takes up residence” and can hide for decades. Eradicating HIV from these memory T cells has been the stumbling block to curing most infected individuals; Brown’s is the only other known case in which this has occurred.
If the treatment used on the toddler can be replicated, it may only work on infants, as it seems that treatment needs to be started immediately after birth. Still, there may be some hope for adult patients. Steven Deeks, an AIDS researcher at the University of California explains that “[t]he treatment of the Mississippi girl appears to have threaded the needle between bloodstream infection and permanent seeding of the memory T cells. Achieving that in adults, most of whom acquire HIV through sexual contact without knowing it, is exceedingly difficult. But it may not be impossible.”
In many ways, science has already solved the issue of mother-to-child transmission of HIV. Women who are known to be HIV-positive during pregnancy are given drug therapies that reduce the chance of infection in the infant from 30 percent to one percent. Most HIV-positive pregnant women in the United States receive this therapy, and only about 200 HIV-positive babies are born each year in the country. This case was a bit of an outlier, because the infant’s mother did not receive any prenatal care. (See Jim Merrel’s recent Rewire article for more on that part of the story.)
Worldwide, the numbers are different: Only about 60 percent of pregnant women receive the drug therapies they need, and approximately 330,000 babies are born each year with HIV, 91 percent of them in sub-Saharan Africa. While the Mississippi case provides a testable hypothesis for treating HIV-positive infants, it’s unclear whether this treatment would make much of a difference on a global level. Luiz Loures, deputy director for science at the Joint United Nations Programme on HIV/AIDS (UNAIDS), explained that it wouldn’t be hard to design a clinical trial to test the treatment used in Mississippi, but that “implementing it on a large scale is another matter. That would require laboratory equipment that detects the virus, which is not available in many rural settings in the developing world.”
Is “Cure” the Right Word?
The first time I heard the word “cure” associated with an HIV-positive individual, the headlines were about Earvin “Magic” Johnson, the basketball star who revealed he had the virus in 1991. By coming forward with his diagnosis when he did, Johnson helped bring greater awareness to the fact that it is important for everyone to prevent transmission and get tested for HIV.
In 1997, media outlets started to report that Johnson had been “cured” of HIV. His doctors quickly clarified that though he had undetectable levels of the virus in his blood, the virus was still in his body. “[W]e must emphasize that ‘undetectable’ doesn’t equal ‘absent.’ It would be premature and incorrect to say Earvin is ‘virus-free,'” said two of Johnson’s doctors in a statement at the time. Despite this explanation, the idea that Magic Johnson was “cured” of HIV has persisted—some websites even sell “cures” that Magic supposedly used.
In reality, Johnson represented an early success with Highly Active Anti-Retroviral Therapy (HAART). These drug cocktails were a major breakthrough in treating HIV and often have allowed HIV-positive individuals to live long and healthy lives. With the introduction of these therapies, HIV became a manageable disease for many individuals, rather than the death sentence it had once been.
The flip-side of this progress, however, is that many people become lax about HIV prevention and testing. This is exactly what AIDS activists feared when news of Magic Johnson’s “cure” came out 16 years ago. Lee Klosinsky, who was the director of education at the AIDS Project of Los Angeles at the time, told the LA Times, “My concern is that people are going to think that … he’s cured, that there’s a cure for AIDS, therefore, I don’t have to worry about being infected.”
Individuals working today in the fields of HIV treatment and prevention have similar fears about the recent HIV “cure” stories making headlines. Joan Garrity, an HIV educator and trainer, explained to Rewire that messaging can be tricky in these cases. “I do wish they would stop using the work ‘cure’ for these individual cases. They could certainly refer to them as encouraging news, boosts to research, promising developments,” she said. “For the long-term survivors, they have heard this tempting term used so many times that it is almost meaningless, or feels like a set-up for disappointment. For those newly diagnosed it is probably somewhat encouraging. For the population of people we are trying to reach with prevention messages, it’s just not helpful. ”
Garrity reached out to a group of colleagues and people living with the disease to see how they felt about the use of the word “cure.” (They all asked to remain anonymous.) “I am a more than 30-year survivor of HIV, and am so tired of hearing about HIV/AIDS ‘cures,'” one HIV-positive individual said. “There is nothing so disheartening as to have your hope built up and then shot down. I prefer to think of these as potential advances in HIV treatment …. It also seems that people would be less likely to fund HIV-prevention programs if they thought there was a cure.”
Another person disagreed: “I have no problem with the use of the word ‘cure,’ if it can be proven. I pray that one day there will be a cure for all persons living with HIV/AIDS as well as all other ‘incurable’ diseases. So I am hopeful, and it is encouraging news.”
Still, there was agreement among many individuals she heard from that this could make prevention messaging harder. As Garrity pointed out, “Ever since the development of effective treatment to slow the progression of HIV, there’s been a struggle between how to convey the message that this is something to seriously avoid, and still give the newly infected the hope they need and even promises of the likelihood of a long lifespan.”
A colleague of Garrity’s put it this way: “I think it further lulls people into a sense of ‘by the time I would get sick they’ll have figured this out,’ and makes them less inclined to make protective sacrifices in the short run.”
Julie Davids, director of the HIV Prevention Justice Alliance, remembers being curious about the impact on prevention messages when Brown’s story became public a few years ago, but in retrospect feels that the attention it drew to HIV was a good thing. “It gave us an opportunity to talk about HIV and AIDS again and to remind people that it was still a big issue,” Davids told Rewire. She is not as worried this time. “If people come away thinking there’s a way for infants not to get HIV from their mothers, that’s okay, because it’s true,” she said. “I doubt this story will make any pregnant women decide to forgo prenatal care in favor of treating the baby this way. We can use it as an opportunity to remind people that mother-to-infant transmission is preventable.”
In the end, stories like this are an opportunity. For scientists, they are an opportunity to learn more about how this very complicated virus works, how to treat it, and ultimately how to find a real cure that works for everyone. They are also an opportunity for advocates and educators to remind the public that HIV remains a real concern; progress is being made, and there is hope, but in the meantime prevention, testing, and treatment remain vital. Ultimately, maybe all news really is good news when battling public complacency around the HIV epidemic. Still, the word “cure” should not be thrown around too lightly or too often.