Getting up to speed on the latest news on HIV

If you care about the health of communities, about social determinants of health, or about health policy, HIV is a treasure trove of story ideas.

In a companion tip sheet, Heather Boerner listed some things she thinks general news coverage about HIV gets wrong, along with how to correct those mistakes.

Here she shares what you need to know getting started covering the new science of HIV.

By Heather Boerner

Update on the science

• Multiple studies — one large randomized controlled trial of heterosexuals, two prospective studies that include both heterosexual and homosexual couples, and epidemiological studies of the impact of wide roll out of HIV drugs to people living with the virus — have found 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 transmissions of 96 percent in the clinical trial and 100 percent (so far — final readouts of these studies will be coming in the next few years) in the prospective studies.
• Widespread viral suppression also correlates to a drop in new HIV diagnoses of 44 percent in one national cohort.
• This is known as treatment prevention in clinical circles. Among the HVI activist community, it’s known as Undetectable=Untransmittable, or U=U (a hashtag you can search).
• Recently, the CDC and HHS have affirmed this science in a Dear Colleague letter.
• The FDA approved a combination HIV treatment pill (emtricitabine/tenofovir, sold under the brand name Truvada by Gilead Sciences) for HIV prevention in a clinical protocol called pre-exposure prophylaxis (PrEP). When taken nearly daily by women and at least four times a week among men, HIV prevention drugs can reduce the risk of acquiring HIV by more than 90 percent, according to the randomized controlled trial iPrEx. Researchers are developing other methods to deliver a variety of other HIV prevention drugs, including vaginal rings, rectal gels, implants and long-acting injections. None of those products are yet approved, but the developers of the vaginal ring have submitted for regulatory approval in Europe.

How to use the numbers

Consider these words from Dr. Robert Grant from University of California, San Francisco, a clinician and lead investigator of the iPrEx trial. This section is taken from a story I did on HIV treatment and prevention in pregnancy at the International AIDS Society Conference on HIV Science in July 2017:

‘That does not mean including “falsely precise numbers” from the HIV Prevention Trials Network (HPTN) 052 treatment-as-prevention trial, which indicate that treatment is 96% effective, or even from iPrEx, which indicate that PrEP is 63% to 75% effective.

‘”If you start talking about numbers, it gets really confusing, really fast,” Dr Grant said. “Patients are going to ask, ‘What happened to the 30% of people using PrEP who got HIV anyway? Or what happened to the 4% of people on ART who transmitted anyway?’”

‘”The answer is that those people don’t exist,” he explained. They are the outcome of study designs that included placebos and datasets that included people who didn’t actually take medication. The only reason that HPTN 052 didn’t come out 100% effective is that one person transmitted HIV before he was virally suppressed. And in the PrEP trials, 30% to 40% of people had no evidence of HIV prevention drugs in their systems.

‘”They’re not PrEP users and they’re not like your patients,” he said. “Can we adopt the U=U concept? It’s clear and evidence-based.”’

The state of the epidemic in the U.S.

• Good news: Rate of new diagnoses is dropping and people living with HIV are living longer (which means that the prevalence of HIV is rising). Source: CDC
• The average life span of people living with HIV in North America and Europe has risen to 73 years old in men and 76 in women. Source: The Lancet HIV
• Disparities: Outcomes continue to be worse for younger people of color, especially young African American men who have sex with men. Source: CDC
• 86 percent of adults with HIV in the U.S. have been diagnosed. 40 percent are engaged in care. 37 percent have been prescribed medication. 30 percent have suppressed viral loads. Source: HIV.gov
• Among adolescents, only 40 percent know their HIV status and only 10 percent have a suppressed viral load. Source: Medscape
• Transgender people, especially transgender women, test positive for HIV three times as often as cisgender people. Source: CDC.
• HIV testing rates among transgender people are among the lowest in the US. Source: CDC
• More context: First Year in Care Critical to Retention, HIV Suppression, Medscape

Policy considerations

• Changes to the ACA and Medicaid stand to disproportionately affect people living with HIV. Source: Kaiser Family Foundation
• Changes to the 340B drug discount program affect AIDS service organizations (ASO). Source: TheBody.com
• There are drug assistance programs in each state that can make HIV medications free for people living with HIV. However benefits vary by state. Check out the AIDS Drug Assistance Program (ADAP) in your state for information. Source: HRSA
• The National HIV/AIDS Strategy has not been renewed under the current administration. Source: Medscape
• Most states have criminal laws on the books that make it illegal for someone living with HIV to have sex without disclosing their status; however the laws are unequally enforced, it’s hard to prove you did disclose, and people are going to prison for allegedly failing to disclose even in the absence of any transmission. Source: The Center for HIV Law and Policy
• HIV organizations have sued health insurers for placing HIV drugs in their most expensive drug formulary tiers to discourage people living with HIV from selecting that plan. Source: Healthline
• Insurers have also changed policy around access to Truvada for HIV prevention. Source: The Daily Beast
• Housing instability impacts access to HIV prevention, diagnosis and treatment. Source: HUD/HOPWA/Community Planning and Development

How to localize

• Another place to look for HIV policy information: the National Association of State and Territorial AIDS Directors (NASTAD), which has its own policy arm and can direct you to the HIV program director in your state.
• People living with HIV and people taking PrEP are your best resource. You can find them on Facebook groups like PrEP Facts (MSM or Women or Trans men), HIVE: a hub of positive reproductive and sexual health, International place for people with HIV/AIDS and the people who love us, and the US Women and PrEP Working Group. You can also get in touch with organizations such as the SERO Project, Lambda Legal, and the Positive Women’s Network-USA.
• Seek out reputable journals: Lancet HIV, the Journal of the International AIDS Society, AIDS, JAMA Infectious Disease, etc.

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.