HIV Prevention Activists Urge U.S. Officials to Seize the Moment
An alliance of prominent HIV activist groups released a public statement this week urging the U.S. Centers for Disease Control and Prevention (CDC) to "change the way it conducts HIV prevention." The six-page, recommendation-laden paper was presented to top CDC officials on the opening day of the 2014 STD Prevention Conference in Atlanta, Georgia.
ACT UP New York, the primary organization behind the statement, titled it "The Atlanta Principles" in honor of the 1983 Denver Principles that launched the empowerment movement of people living with HIV. The name also references the city in which 12% of young black gay men become HIV positive every year, according to the Emory School of Public Health. Atlanta is also the location of the CDC's headquarters.
Jim Eigo, a representative of ACT UP New York who participated in the meeting with CDC officials, said that the CDC welcomed the input. However, he expressed concern that there is "not the urgency we want to see" on the part of health officials in the U.S. "Unless there is an enormous, concentrated effort and cooperation of healthcare bureaucracy in this country, we are not going to get there. It's like the bureaucracy is quite content to manage the epidemic we've got. We can't have curators of an epidemic. It's not acceptable. This epidemic has to end," he said.
"We've got this moment here -- ACA, expanded Medicaid," Eigo continued. "We understand treatment more than we did, that treatment for people with HIV is so much better for them and for the community. We have PEP, we have PrEP. But we don't have the political will."
The Atlanta Principles note that the participation of communities in HIV prevention research has paid off with data confirming the multi-faceted role of HIV treatment in prevention. But without rapid and large-scale translation of the research into programs and policies, it warns, communities will not be relieved of the "massive burden of disease into the forseeable future."
"It's clearer to me than ever that it's going to take an earthquake to move on this," Eigo said. "The lift is tremendous."
Excerpts of the recommendations contained within the Atlanta Principles:
Sexually Frank HIV Prevention Messaging
- CDC must rewrite content guidelines to allow the production and promotion of sexually explicit materials in the interest of public health. It must collaborate with the communities most affected by HIV to design those materials.
Treatment as Prevention (TasP)
- CDC has to aid local health departments in exploiting the Affordable Care Act (ACA) and expanded Medicaid to plug leaks in the treatment cascade so that more people living with HIV can live better and achieve undetectability.
- CDC should collaborate with the communities with the highest HIV prevalence to design a national information campaign about the prevention benefits of HIV treatment. The campaign should target both HIV(+) and HIV(-) individuals and include social media channels.
- CDC should design and deliver a national TasP information campaign for the general population to de-stigmatize HIV by dispelling misinformation about its transmission.
Pharmaceutical Prophylaxes: PrEP and PEP
- CDC should expand the PEP and PrEP information it offers, collaborating with community members in designing campaigns that target the populations where HIV incidence remains highest and using the traditional and social media these populations use in their everyday lives.
- CDC should tailor PEP and PrEP information for subpopulations historically at risk for HIV, such as injection drug users (IDUs) and women at particular risk because of homelessness or partner abuse.
- CDC should host a series of seminars, webinars, workshops and conferences that train medical providers about PEP and PrEP guidelines and their implementation in clinical settings -- including how to bill third-party payers.
- CDC needs to let medical practitioners know: Truvada as PrEP is approved prophylaxis for individuals at risk for HIV. Responsible practitioners should prescribe pharmaceutical HIV prophylaxis accordingly.
Funding HIV Prevention: Targeting Populations at Highest Risk, Funding New Prevention Efforts and Older Ones, Funding That Rewards Success
- CDC must target prevention funding to populations at highest risk.
- CDC has to fund new prevention efforts that exploit TasP, PEP, and PrEP and reach out to people at risk who have been newly enrolled into healthcare by the Affordable Care Act (ACA) and expanded Medicaid.
- CDC should continue to fund older prevention efforts that make sense, such as condom availability in bars, sex spaces and places where key populations gather. At the same time, it should support research into new ways of behavioral prevention.
- Before cutting funding, CDC must allow local officials and community members to defend the success of programs that have contributed to lowering the number of new infections in states that have invested in prevention efforts.
HIV Testing and Identifying Acute HIV Infection (Seroconversion Illness)
- CDC should consider expanding testing sites beyond traditional points of care, to dental offices and mental health settings, and beyond medical settings to places where key populations gather in their everyday lives.
- CDC must promptly revise HIV testing guidelines for key populations.
- CDC must grant CLIA waivers right away for HIV diagnostics that bring the most sensitive testing to the point of care.
- CDC and its local partners must train practitioners about how to screen for and detect acute HIV infection, as well as educate communities at risk.
Need for More Sensitive HIV Epidemiology
- CDC has to disaggregate HIV incidence data for transgender women from data it collects for gay and bisexual men so it can make separate incidence estimates.
- CDC needs to collect data specific enough for tailoring prevention to the sexual networks of a full range of gay and bisexual men.
- CDC has to collect data that will facilitate our understanding of HIV risk for transgender men and for sex workers.
- CDC must be careful to monitor HIV incidence for the new wave of young IDUs and for women at particular risk.
Reforming National HIV Behavioral Surveillance (NHBS)
- CDC should introduce real-time PCR sampling of NHBS subjects who report an unknown serostatus to determine incidence of acute infection.
- CDC should take the viral load of a subsample of NHBS subjects to help estimate community viral load.
- To ensure that NHBS participants who report an unknown serostatus are not simply reluctant to share personal information, CDC should test a subsample for antiretroviral drugs in the blood.
- CDC could use NHBS to help discover possible behavioral and biomedical correlates of HIV infection in high-incidence subpopulations.
CDC and Sex Education
- CDC should issue basic sexual education guidelines, free of prejudice, that normalize sex as part of a healthy life: What do students need to know in order to maintain sexual health? Sex education has to speak openly about heterosexual sex and the full range of queer sex -- gay, lesbian, bisexual, and transgender -- without stigmatizing language.
- CDC should work with local officials to develop or improve a local HIV curriculum that educates students about HIV, its treatment and prevention, behavioral and pharmaceutical, and works to counter HIV fear and stigma. CDC should survey students to help ensure the curriculum's effectiveness.
- Fear-based HIV prevention messages only feed stigma: CDC has to abandon them.
The Lives of People With HIV Inform Clinical Practice
- CDC must focus surveillance of subpopulations living with HIV, including seniors and women, so that the information gathered will improve care.
- If CDC believes that the Social Security Administration's proposed revisions of AIDS criteria jeopardize women's health by curtailing their access to healthcare, CDC has an obligation to oppose these changes and make its opposition known.
CDC's Ongoing Partnership With HIV-Affected Communities
- CDC must partner with communities most affected by HIV and nurture their organizations so they can be full partners in preventing new HIV infection and connecting people to care and wider services.
Julie "JD" Davids is the managing editor for TheBody.com and TheBodyPRO.com.