June 27 is National HIV Testing Day, a day to raise awareness about the importance of HIV testing and early diagnosis. This year, the theme issued by the Centers for Disease Control and Prevention (CDC) is “the power of knowing: knowing your HIV status, knowing your risk, knowing your prevention options, and knowing your treatment options.” With an estimated 1.1 million people in the United States living with HIV, and approximately one in seven left undiagnosed, education on the disease and access to resources is often inaccessible to those at greatest risk.
Today we interview Valerie Betley, IMPAQ Research Associate and HIV subject matter expert, who has dedicated her career to exploring issues of HIV prevention and treatment access. In addition to a Master’s of Public Health degree in Epidemiology with a focus on infectious diseases, Valerie has more than 15 years of domestic and international experience focusing on HIV program and service evaluation and capacity building. At IMPAQ, Valerie leads a team working on several HIV-related projects for the CDC, which help ensure HIV program and service provision to the most at-risk populations in the United States.
What type of work do you and your team at IMPAQ do in the areas of HIV testing and treatment?
Valerie: IMPAQ has supported CDC for over seven years on nine projects that use qualitative research methods to identify and understand barriers and facilitators to HIV prevention, care, and treatment in areas of the United States with the greatest HIV burden. All studies were conducted in the south and southeastern US.
IMPAQ’s research in HIV contributes to CDC’s understanding of health disparities and best practices for HIV prevention, treatment, and care, especially for “hard-to-reach” populations (men who have sex with men (MSM), transgender people, and injection drug users) and those that work with them. Through our work on the CDC studies, we have demonstrated experience and expertise in working with health departments, community-based organizations (CBOs), AIDS Service Organizations (ASOs), federally qualified health centers (FQHCs), and other providers within a variety of clinical and non-clinical settings to recruit and interview HIV-negative individuals and people with HIV.
Through these semi-structured interviews, we are able to gain insights into people’s perspectives on and experiences with HIV services and any challenges accessing care. This qualitative approach yields details and nuances that may not be possible to gather through quantitative data collection methods. Valuing the experiences of the clients is central to the qualitative data collection design.
In addition to recruitment and conducting in-depth interviews, IMPAQ has developed study protocols, study instruments, and regulatory approval packages, overseen all project coding activities, and developed and maintained a study data enclave.
What are some of the greatest challenges that providers and clients currently face in ensuring adequate access to HIV services?
Valerie: There are numerous challenges. Here are some challenges based on our findings from a few of our CDC projects:
- Chronic stigma which can negatively affect the health and wellbeing of people living with HIV by discouraging them from learning their HIV status, accessing treatment, or staying in care.
- Insufficient HIV education, coupled with misinformation.
- Social determinants as barriers to service access (housing, employment, mental health, food security).
- Misalignment between the needs of the client and availability of services.
- Linking anyone who tests positive for HIV to care in as little time as possible.
- A shortage of supportive providers who are culturally sensitive and knowledgeable about specific health issues, for example trans-friendly providers.
For years, the approach to HIV care has been a siloed one, meaning care has been based on HIV status. HIV prevention and care requires taking a holistic approach, to focus on access to essential social services and general medical care regardless of HIV status. More and more jurisdictions are transitioning to this approach as there is evidence-based research to support its success.
How is your work at IMPAQ addressing those challenges?
Valerie: The results of these project can affect change at the policy or program implementation levels and ensure that resources and services are made available to the appropriate local jurisdictions.
The study findings are disseminated to project-specific stakeholders and partnering organizations, as well as other public health personnel at CDC in the form of reports. We have published scientific papers and disseminated findings at multiple conferences. This ensures broad reach of the findings so that the practical insights or implications of the study may yield additional and useful scientific and programmatic applications. The sample size of the studies are too small to be generalizable or to represent the entire study population, however, the results from these studies may be helpful for new or existing programs elsewhere.
For example, transportation is a major barrier to accessing care, especially for clients that live in rural areas. To ensure that clients make it to their appointments, many community-based organizations now have dedicated funds to pay for ride-sharing services like Uber or Lyft, have vans that pick up and drop off clients, or provide public transportation cards. We’ve also heard of staff members using their own cars to pick up clients for appointments.
What is the current focus of non-clinical HIV research?
Valerie: Current research focuses on HIV prevention and alternatives to the delivery of PrEP (pre-exposure prophylaxis), which is currently administered in a daily pill to prevent HIV in high-risk individuals. It became available in 2012 and despite its benefits, the uptake has been relatively slow in clinics, health departments, and community practice settings. Medication adherence, availability, and cost are a few of the contributing factors driving PrEP acceptance and uptake.
We're currently supporting CDC on two projects that are exploring the different methods for delivering PrEP and examining the acceptability and adoptability of biomedical HIV prevention technologies in African American women and MSM in the southern United States. There are innovative methods that are at different stages of clinical trials and the results from these studies may be relevant to the development or testing of biomedical interventions for HIV prevention among at-risk populations.
What makes you passionate about working on HIV issues?
Valerie: From an early age, I was interested in HIV. I remember watching the Ryan White movie in grade school, about a young teen infected with HIV through a blood injection, and it had a great impact on me. I read books and watched movies and documentaries until I was able to study HIV and infectious diseases in college.
In undergrad and grad school, I took every possible course on HIV, STDs, and infectious diseases. I volunteered as a sexual health peer educator during college and worked with people living with HIV, providing information to adolescents and young adults. After graduate school, I eventually lived in Zambia, Africa for a few years working for a nonprofit. I thought if I truly wanted to do HIV work I had to work in one of the regions hit hardest by the disease. I traveled around the country to evaluate the Early Infant Diagnosis Program, which focused on testing babies for HIV as early as four weeks old.
I knew from an early age that I wanted to focus on HIV and work with vulnerable populations to improve their quality of life. I have spent the past 15 years fortunate enough to do just that, across multiple countries and contexts. My wish is that there will be a HIV vaccine in my lifetime and I hope for a day when I'm no longer needed to do this work.