Five takeaways: Ending the HIV epidemic requires changes both large and small

Scientific advances in recent years makes an end to the HIV epidemic a real possibility.  

As 2020 ended, three communities from Ohio completed plans to do just that. The goal of the plans is aggressive: reduce new HIV infections by at least 90 percent by 2030. Cuyahoga, Franklin (Central Ohio) and Hamilton counties were identified for early planning as part of national Ending the HIV Epidemic (EHE) efforts, because those three counties account for more than half of new HIV infections in Ohio each year.

 The goal of the plans is aggressive: reduce new HIV infections by at least 90 percent by 2030.

The Center for Community Solutions was engaged by the Ohio Department of Health to facilitate separate but concurrent planning processes and to compile EHE plans which were submitted to the Centers for Disease Control and Prevention. Submitted plans are available on Community Solutions’ website. Planning was driven by data, and each community quickly identified priority populations based on the characteristics of people testing positive for HIV. There was a lot of overlap among the three counties, and I was honored to lead a stellar team of colleagues across the three jurisdictions. Below are five things that stood out to me.

1. Younger people view HIV differently than long-term survivors.In the 1980s and 1990s, contracting HIV was, often correctly, viewed as a death sentence. Long-term HIV survivors and allies spoke passionately about losing loved ones in the early days of the epidemic. Today, treatment advances mean that people can live with the disease for decades.  

More recently, in each of the three counties, people between the ages of 20 and 34 accounted for more infections than any other age group. Several stakeholders, including people who were recently diagnosed with HIV, explained a feeling in parts of the community that HIV is no longer a big problem. If you contract the virus, you just take a pill and it’s fine. This attitude, coupled with a lack of education, makes prevention efforts more difficult. Many people in the community have outdated views about the populations in which HIV is spreading. Some aren’t worried enough about the disease to take even simple steps to avoid infection, such as consistently using condoms.

 In each of the three counties, people between the ages of 20 and 34 accounted for more infections than any other age group.

The fact that HIV has become a manageable chronic disease is enormously beneficial to those already living with HIV. The tragedy is that HIV infection is completely preventable.

1. Education is critical to end the HIV epidemic.Ohio is the only state in the country that lacks health education standards for K-12 students. While students must complete 60 hours of health class to graduate, there is no statewide guidance on what children and teens should learn about nutrition, drugs, mental health and sex. Instead, curriculum is left to individual school districts. Very few schools use sexual health education curriculum which is medically accurate or evidence-based, and even fewer programs are inclusive of LGBTQ+. Parents often expect their children to receive this instruction in schools. They aren’t. And that lack of basic knowledge contributes to the HIV epidemic.

 Very few schools use sexual health education curriculum which is medically accurate or evidence-based, and even fewer programs are inclusive of LGBTQ+.

Service providers in the community work to provide sex-ed information, but it is not reaching nearly enough people. Both experts and community members identified public and health education as a serious problem that must be addressed if we are to reduce new HIV infections. They pointed to an urgent need to raise awareness about existing programs and resources; improving general understanding about preventing and treating HIV; and working to reduce stigma.

1. Ohio’s outdated HIV laws make it more difficult to reduce new infections. Many community stakeholders pointed to Ohio’s draconian laws that criminalize HIV as a major driver of HIV stigma. In Ohio, a person living with HIV can go to prison for EIGHT YEARS for not disclosing their status to a sexual partner, even if there was no result of harm or even risk of HIV transmission. It is a felony and according to the Positive Justice Program, “This is a more severe punishment than for reckless homicide, sexual battery or arson.” From a criminal justice perspective, it is better for people to be ignorant of their HIV status so they cannot be charged – which is in direct opposition to what is needed from a public health and disease prevention perspective. People from each county can advocate for state laws to be modernized, but making the change requires state legislation and is outside the purview of local groups.  

Stigma has been shown to lead to a reluctance to seek help or care. The need to keep people living with HIV in care is critical to end the HIV epidemic. HIV treatments, used consistently, can reduce viral loads so much that the amount of virus in someone’s blood is undetectable. When that happens, they no longer pass the HIV virus to others. This is called U=U, or Undetectable = Untransmittable. The outdated HIV laws are a significant barrier to identifying people living with HIV and helping them get care and treatment.

 Stigma has been shown to lead to a reluctance to seek help or care.

1. Racism is a real and urgent problem. There are serious racial disparities in new HIV infections. The rate of new diagnoses among people who are Black or African-American was more than six times higher than that of whites in Cuyahoga County and five times higher than whites in Franklin County. Closing the racial gap would go a long way toward meeting the goal of a 90 percent reduction in HIV infection. On the other hand, everyone acknowledged that addressing racism is a long-term undertaking.  

In the early days, HIV impacted mostly white gay men. Today it’s much more widespread. Yet Black voices are often left out of conversations about the disease and how to end it. EHE planning processes were more inclusive than some past undertakings, but there’s plenty of room for improvement.  

The EHE plans in each county include real solutions to begin to tackle racism as it relates to HIV. Key to those efforts is improving the ethnic and racial diversity of providers at all levels. There are few physicians in these counties who specialize in the care and treatment of HIV and even fewer who are from communities of color.

1. We know what we need to do to end the HIV epidemic. EHE plans were built on four pillars: diagnose, treat, prevent and respond. Everyone who is at risk for contracting or spreading HIV needs to be aware of their status. Those who are living with HIV need to receive consistent care. Harm reduction efforts like needle exchanges and condom promotion should be easy to access. Everyone needs to know how HIV is transmitted and how to reduce their risk of infection. Communities need to be able to quickly identify HIV outbreaks and respond rapidly.

 Just because we know how to end the HIV epidemic does not mean that it will be easy.

Just because we know how to end the HIV epidemic does not mean that it will be easy. Yet all three Ohio communities identified clear steps to make progress on each of the four interconnected pillars. As one advisory committee member pointed out, although the communities are different, the virus behaves the same. After months of meetings, listening to hundreds of stakeholders and identifying dozens of strategies, it became increasingly clear that we know what needs to be done to turn the dream of an end to HIV into reality. The EHE plans give us a roadmap of places to start.