By Heather Boerner
This primer on covering HIV was first published in 2017. Heather Boerner has updated it with scientific breakthroughs from the past two years.
Cure! But not for all and be careful in your reporting.
The big news this year is the potential of a cure for HIV. In March, researchers published a paper in Nature announcing that it had cleared a second person – an anonymous patient in London – of all his HIV.
If the man’s remission – that is, elimination of HIV without treatment – holds, he would join Timothy Ray Brown, known as the “Berlin Patient,” in being the second person cured of HIV. Both the new patient and Brown received stem cell transplants that led to remission.
But hold it right there.
Many publications ran with this news with splashy headlines claiming a cure – not a remission – and not explaining the stem cell transplants that cleared these patients’ HIV was aimed at curing their cancer. Clearing HIV from the patients’ body was a side effect of receiving stem cells from people who happened to carry a genetic mutation that leads to HIV immunity.
Running headlines that HIV has been cured can lead to false hope, as two doctors noted.
Melanie Thompson, an HIV physician in Atlanta, tweeted that a patient came in to her clinic with this expectation: “I thought I was coming in today to get my stem cells to cure my HIV.”
Another physician, Dr. Kate McManus replied to Thompson’s tweet saying she’d gotten questions like that in her clinic, too.
That’s a problem because stem cell treatments are dangerous and costly.
Anthony Fauci, M.D., director of the National Institutes of Allergy and Infectious Diseases called a stem cell transplant to eliminate HIV “Draconian” and the approach “is not scalable under any circumstances.”
So before reporting cure news with a sense of awe, stop. Sit on your hands. Talk with your editor and the headline writer so you aren’t stirring up hope that an HIV cure is around the corner. Talk your editors down as well. The Associated Press’s Carla Johnson did a great job mediating the excitement and the facts for a broader audience.
Covering the plan to end HIV in the U.S.
What is important to report on right now is the huge racial and economic gap between those diagnosed with HIV who are getting treatment and those who are not. For those who are getting treatment, existing drugs can suppress the virus to the point where it is undetectable in the blood. But too many people are not getting treatment. The facts here tell the story of HIV disparity.
- Black Americans make up 44% of the 1.1 million people at high risk for HIV, but only 1% of people prescribed a pill to prevent HIV (known as pre-exposure prophylaxis, or PrEP).
- New HIV diagnoses in 2017 was 38,739. This is almost unchanged from the previous five years. New diagnoses dropped by 14% among white gay and bisexual men; fell 8% among heterosexuals; fell 17% among all people who inject drugs and 12% among gay and bisexual men who inject drugs.
- In contrast, rates for Black gay and bisexual men held steady and rose 12% among Latino gay and bisexual men.
- The number of people who’ve achieved viral suppression – that is, have a virus that’s so well controlled that it’s undetectable – has tripled since 1997, when the first HIV medications became available.
- In contrast, only 36% of young black men have achieved viral suppression.
- While new diagnoses are dropping in many areas, 48 US counties accounted for nearly half of all new HIV cases in 2016 and 2017.
Policy
The other big story to emerge is a federal plan, announced by President Trump in his 2019 State of the Union, to end the HIV epidemic by 2030. In a February editorial in JAMA, NIAID’s Fauci details a strategy to target $291 million to 19 states, Washington, D.C., and Puerto Rico.
Following up on that strategy and getting in touch with local people in the targeted areas who are doing the work will be key to covering this story in the coming year. Especially pay attention to telemedicine, syringe-access programs, and get in touch with local AIDS service organizations (ASOs), especially in rural areas. Call the clinics that get funded and learn how well they do serving people now.
Update on the treatment as prevention science
2019 update:
There’s more evidence, both clinical and epidemiological, to build on previous studies showing that taking HIV drugs (antiretroviral therapy, or ART) consistently can lower presence of HIV in the body to undetectable levels. This undetectability correlates to a drop in HIV transmission, leading activists to coin the hashtag #U=U, that is, Undetectable equals Untransmittable.
New research to corroborate that:
- PARTNER2: Out of 77,000 condomless sex acts between men, there were no new linked HIV infections. PARTNER2 researcher, Alison Rodgers, MD of University College London, told the audience at AIDS2018, “If you’re on suppressive ART, you are sexually non-infectious. The risk is zero.” (Source: Medscape Medical News, AIDS 2018.)
The best way to describe the result of these studies is: “HIV treatment has become so effective that it reduces the amount of virus in a person’s system so much that doctors can’t even find it in their blood. While people on treatment are not cured, suppression of the virus is so complete that they actually don’t have enough virus in their system to pass on to anyone else.”
Also new is data about where new HIV cases are coming from:
- CDC’s Morbidity and Mortality Weekly Vital Signs: In a modeling study published in March, CDC researchers the vast majority of new HIV cases – 80.2% – came from people who either don’t know that they have HIV, or are diagnosed but not yet engaged in care. Some people, including CDC chief Robert R. Redfield, have said that the data is an argument for getting more people into care and helping them stay in care. (Source: Medscape Medical News, MMWR)
HIV prevention interventions
Emtracitabine/tenofovir is an antiretroviral combination pill sold by Gilead Sciences as Truvada. It has been found effective in clinical trials and in the real world to prevent HIV.
2019 update
- Pay attention to what is happening with Gilead Sciences. The company is seeking regulatory approval for a new version of tenofovir/emtracitabine for HIV prevention. If approved, it will be the second pill available for HIV prevention. The new formulation uses a variant of Truvada, using tenofovir alafenamid fumarate (TAF) instead of regular tenofovir. This new formulation is marketed as Descovy (it’s already in use as a treatment for HIV, not for prevention) and has fewer side effects. TAF doesn’t risk affecting kidneys and bone mineral density the way Truvada does. This move comes as the price of Truvada remains high, and consumers are fighting back with a campaign called “break the patent” on Truvada. Everyone will be watching closely to see how approval of Descovy for PrEP could impact both use of PrEP overall and how it will impact the cost of healthcare.
Heather Boerner is a Pittsburgh-based health care journalist. Her work has appeared on PBS NewsHour’s website, The Atlantic, The Washington Post, and the San Francisco Chronicle, among other places. She covers HIV for Medscape and is a contributing editor to TheBody.com, one of the largest HIV websites in the world. In addition, she writes about health care policy, health care access and other topics for a variety of publications.
