HIV/AIDS: The Struggle to End the Illness Isn’t Over
In the article “America’s Hidden HIV Epidemic”, the New York Times explored the insidious ways HIV continues to affect communities 36 years after it entered the scene as a public health crisis of unimaginable magnitude. And while antiretroviral treatments are more accessible than ever before and PrEP and PEP (pre- and post-exposure prevention treatments for HIV) have reduced the rate of new infections, the illness continues to take lives.
The truth is, despite significant declines in HIV/AIDS-related deaths since the early 1990s, we aren’t living in a post-HIV era. The United States remains engulfed in a full-blown battle with this disease, and our most under-resourced individuals are most often on the front lines.
Our newest Health Educator, Nickolas Sumpter, M.P.H., CHES, has been working on the Oakland Health Men’s Disparities Project, a collaborative between the Stanford University School of Medicine and Bridge Clinical Research to improve health outcomes amongst African American males. We sat down with Nickolas to learn about what he’s uncovered in his research, how HIV/AIDS is impacting youth today, and how comprehensive sex education can help achieve an HIV/AIDS-free future.
HC: Can you tell us about the project you’re working on with the Stanford University School of Medicine and Bridge Clinical Research?
NS: Sure, the Oakland Health Men’s Disparities Project is a collaboration between the Stanford University School of Medicine and Bridge Clinical Research that aims to understand and redress the health inequities among African American men in Oakland, CA. The project is a scale up of a pilot study conducted back in 2016. During the 2016 pilot we found that African American males weren’t using the preventive healthcare services - including HIV testing - they were eligible for. Why? Two potential explanations are lack of insurance and a mistrust of healthcare providers and medical professionals. In this study, we want to look more closely at why people in these communities aren’t seeking the care they qualify for and how providers’ race and age could possibly influence patients’ likelihood of seeking care.
My role is to oversee a team responsible for recruiting eligible Black male research participants who provide us feedback on their health care experiences, specifically in the Oakland.
HC: You hold a Master of Public Health degree and have focused on HIV/AIDS for several years. In your opinion, what is the state of the illness today?
NS: The United States has done well in terms of focusing on prevention. Annual diagnoses of HIV infections are declining, due in no small part to the increased availability of testing. Community clinics, mobile testing units, hospitals and even at home tests offer people more access to know their HIV status.
However, progress has been uneven. People of color, the LGBTQ+ community, and those facing economic adversity – the homeless and those in poverty, bear the heaviest burden. Here are a few statistics to help you understand the disparities a bit more:
Black and Latino gay and bisexual men account for about 70 percent of new HIV infections annually.
Young people are most likely to be unaware of their infection; at the end of 2015 1 in 2 youth did not know they were living with HIV.
The CDC estimates that African Americans represent more than one-third of people living with HIV, despite making up only about 12 percent of the general population.
Hispanics/Latinos represent about 18 percent of the population, but accounted for 25 percent of HIV diagnoses in 2015.
HIV diagnoses are not evenly distributed geographically either, with rates being disproportionately higher in the South.
We have focused a great deal of effort toward reducing HIV infections among women and folks in heterosexual relationships – and we’ve made significant gains. But what this narrow focus has inadvertently done is stigmatize HIV as being an illness that affects low-income, queer, people of color. The danger in that myth is that people feel a false sense of safety, and don’t always take the correct precautions with a partner. People will tell themselves, “I can’t get it”, but thinking in such a narrow way is a dangerous narrative.
HC: Why should we still be concerned with HIV today? The rates have decreased greatly since the early 1990s at the height of the crisis.
NS: HIV/AIDS has not gone away. Discriminated and stigmatized groups are affected at alarming rates despite our advances in medicine since the onset of the epidemic. Low-income, queer folks of color bear the greatest burden for a multitude of reasons - fears about confidentiality, social stigma, lack of insurance, lack of transportation, or competing priorities like food and shelter - all play a role. For instance, in the LGBTQ+ community, negative social biases can discourage testing and treatment for fear of harassment, including from physicians.
Young people between 20-29 have the highest infection rate. An estimated 1.1 million adults and adolescents were living with HIV at the end of 2015. Yet, only about half are seeking continuous care or have reached a level of viral suppression.
Ultimately, we have a responsibility to protect the health of our most vulnerable community members. This isn’t something that can be overlooked simply because it’s may not be in “your backyard.”
HC: What barriers still exist in eradicating HIV?
NS: Consistent preventive education is sorely lacking. Even in states like California that are considered “progressive” and do implement sex ed in pockets, it can be inconsistent across regions. This is a topic that needs to be tackled from all angles. Consistency is one of many reasons the California Healthy Youth Act is so revolutionary and critical.
Educating youth about HIV and other sexually transmitted infections, starting at an early age is the most effective intervention. It’s getting to the root of the problem by addressing misinformation and arming young people with the medically accurate information they need well before they become sexually active. In the absence of credible sex education, youth end up with a void often filled by the media.
HC: What do people need to know about HIV that is overlooked?
NS: Even in 9th and 10th grades, when I would have hoped that students would know the basics about HIV/AIDS transmission, I see youth adhering to dangerous myths about the disease. The media have a powerful impact on how youth understand sexuality, including HIV. In the absence of a trusted source of information, like a parent or a school-based sex education program, students will look to the internet or another source, which are often inaccurate. But, in terms of working toward a solution, teens must have a common understanding of the illness. They must learn how to discuss it with a partner, how to prevent it, and how to manage it if someone is infected - or we will never realize meaningful progress toward eradication. But these aren’t innate skills, they are learned.
HC: What can individuals do to help the stop of HIV/AIDS within their communities?
NS: Talk to your children about sexuality. When we are open about the topic, we can dispel the myths that stigmatize and perpetuate the illness. We have a responsibility to our young people – and to all people – to thoroughly and accurately educate them so they can care for their bodies throughout their lives.
Health Connected’s “values” activity illustrates this so clearly. Students overwhelmingly agree - across age groups, gender, and socioeconomics - that parents should talk to their kids about sexual health at home. The truth is, parents are and will always be, a huge influence on their kids’ lives. The more we can connect with, teach, and support our children when it comes to sexuality, the more prepared they’ll be and the more opportunities parents will have to know and see our kids on an even deeper level.