1/23/2018 1 Comment
HIV/AIDS is not an easy topic to discuss. Why is that? Why is it so easy to discuss the cold virus or flu virus, but not the human immunodeficiency virus?
Countless numbers of individuals have suffered and passed away because of nothing more than the stigma associated with HIV/AIDS. The same stigma has delayed the cure in more ways than one.
This week Dr. Allison Mathews stops by to share how she got involved in HIV/AIDS research and is now leading the way in her community to link affected individuals and community resources by way of technology. She also reveals how stigma, discrimination and systematic oppression are not only preventing the cure, but complicit in the propagation of the virus.
I'll let Dr. Mathews take it from here.
"To understand how I got into this line of work, you have to understand where I come from. I was born in Dallas, Texas, but a significant amount of my life was also spent with family in large and small southern towns in Texas and Louisiana.
"I grew up in a French Creole family, both sides devout Roman Catholic — we ate chicken and sausage gumbo, fish on Fridays, pralines (pronounced PrAH-Leen-z) and all baked goods from scratch. We planned out every meal for the Christmas season, ate Mame’s Natchitoches meat pies for Christmas morning breakfast, and even had Top Chef cooking competitions. Food was and still is our love language!
I think in many ways, we focused on sharing food because there were so many in my family who couldn’t afford much else. I distinctly remember visiting family members in double-wide trailers, nearly condemned wooden homes, and other destitute conditions. Some even lost their homes in the floods, but they ALWAYS had a plate for us at the door.
These experiences informed my understanding of the importance of community and revealed the spirit and ingenuity people can have even when they have few other resources. I earned my BA in Sociology from THE Howard University, and my MA and PhD in Sociology at UNC Chapel Hill. I currently work as a postdoctoral researcher in the Department of Social Medicine and the Institute for Global Health and Infectious Disease at UNC Chapel Hill.
My experiences growing up informed the research questions I asked about how African Americans managed experiences with stigma and discrimination and how we could harness the ingenuity and sense of community that Black people have despite struggling with mental health challenges, HIV/AIDS, and other health disparities.
It was sort of by accident how I got involved in research on HIV/AIDS and helping to find a cure for HIV/AIDS. For several years, I didn’t have a strong interest in working to combat the HIV/AIDS epidemic. It was difficult for me to see the relevance to my personal life or interests. However, I expanded my perspective when I heard the stories of those directly impacted by HIV. It moved me to do more.
I discovered that HIV/AIDS culminated as an epidemic that impacted stigmatized people from marginalized communities who could not easily access healthcare. HIV/AIDS is a symptom of a larger problem with stigma, discrimination, and systematic oppression. Surprisingly, Durham is the 5th highest county in North Carolina for HIV prevalence and diagnoses and ninth in the country for AIDS related deaths. This is true even though we are the City of Medicine and are home to some of the best hospitals, research institutions and pharmaceutical companies in the world.
The only reason we have these disparities is because people are not able to access the resources available in their city. I just believed that was wrong and I needed to help. Through my work, I pulled from my experiences growing up in Texas and Louisiana to shape the 2BeatHIV project and start my consulting company, Community Expert Solutions.
In 2015, I started 2BeatHIV, which is a research project that examines the use of crowdsourcing to improve HIV cure research engagement. Crowdsourcing is a process where a group, instead of an individual, completes a task, solves a problem, or develops innovative ideas. Since 2015, 2BeatHIV has reached over 350,000 people online and 1000+ people at in-person events in North Carolina. 2BeatHIV is being piloted in South Africa and China.
The next stage in my career will be to focus on building my company, Community Expert Solutions. We use crowdsourcing to identify and develop community-based ideas into revenue generating projects that solve health problems. We host professional development workshops with the public and institutional clients to help people move from big idea to global enterprise. People can visit our website to register for our upcoming “Think Big, Thing Global” workshop on March 3rd, 2018.
Currently, we are developing a software called Digital LinCS, which is an online case management platform that automates the process of determining people’s eligibility for free and reduced cost medications. The platform will serve as a liaison between two users: people seeking services and service providers.
People will be able to join Digital LinCS, complete a brief survey and get matched to eligible services. In exchange, the Digital LinCS platform will complete and submit applications on their behalf and make it easier for service providers to connect with eligible patients and manage case loads.
We are currently fundraising for Digital LinCS. People can buy our “Health is Wealth” t-shirts for $25 to support the development of Digital LinCS.