Seattle Community Conversation Series
Community Conversation resumes in early september 2017
Sero-segregation: access and equity in hiv prevention and treatment
May 30 2017
Facilitated by brian minalga, office of HIV/AIDS network Coordination@ fred hutchinson cancer research center
Reflection by Jen Wroblewski
It has been more than 35 years since the human immunodeficiency virus (HIV) was identified. Hard won, grassroots community activism led to formal research efforts to treat and prevent HIV/AIDS. Anti-retroviral therapies have saved millions of lives and the drug Truvada, a Pre-Exposure Prophylaxix (PrEP) medication, has begun to curb the spread of the virus as well. Approximately 100,000 Americans have used Truvada to prevent HIV since its approval in 2012. In late 2016, King County was the first in the nation to achieve the UNAIDS and World Health Organization’s 90-90-90 goal whereby in year 2020,
- · 90% of people living with HIV (PLWH) will be diagnosed
- · 90% of diagnosed PLWH will be engaged in care and
- · 90% of PLWH engaged in care will reach viral suppression (viral suppression means the person is healthy and cannot transmit HIV).
While this accomplishment is incredible, these efforts still have a long way to go, even in King County, among people of color.
Tuesday night during our discussion about access to HIV prevention and treatment, I was surprised and upset to learn that there is a significant lag for people of color—namely African American, Native American, Latinx, and Asian folks--when compared to people who are white. Access to these life-saving medications is not as simple as obtaining and filling a prescription from a doctor. Most of the issues revolve around where you live. Prevention, diagnosis and treatment services increase when trained providers offer HIV testing regardless of whether someone appears “at risk.” Access and engagement also increases if a person identifies with, and is connected with, a LGBTQ community that helps support and educate about providers who are knowledgeable, on clinics that are welcoming and about prescription assistance.
During our discussion, people were most interested in the reasons why PrEP is not widely used. Truvada is the only drug currently available for PrEP. It consists of one pill taken once per day. Adherence to this regimen reduces the risk of HIV acquisition by greater than 96%.. Again, this is an incredible medication developed through biomedical research and through volunteers willing to participate in clinical trials. So why aren’t all folks at increased risk of contracting HIV taking Truvada? I learned on Tuesday that the answer to this question is complex. Truvada costs anywhere between $0 and $1500per month depending on a variety of factors. In theory, people who are insured and meet certain “high-risk” criteria determined by the CDC can access Truvada at no cost to them. However, both consumer and provider awareness of Truvada as PrEP can be a barrier to access. Not all people at higher risk know that PrEP is available or if they do, may not feel comfortable asking for a prescription for PrEP. People at higher risk for contracting HIV may be fatalistic about getting HIV because of the kinds of messages they have received, and may have already “thrown in the towel,” assuming they will become HIV positive no matter what. Policy also plays a role; Washington is the first and only state with a PrEP Drug Assistance Program for those whose insurance does not fully cover Truvada.
We also discussed the role of biomedical research to reduce the access gap to HIV prevention and treatment. A piece of the answer is through trustworthy, just actions to repair historical mistrust by people of color and the Research Practice. In all, people at the table want to see people of color benefit from biomedical research, especially if they are the ones recruited for clinical research and asked to bear the burden of risk from participating in trials. For example, some clinical research run at the Fred Hutchinson Cancer Research Center by a Conversation participant known as “W,” ensures that research participants and their communities benefit from research outcomes by designating a portion of grant funding for post-study follow up and engaged care.
Another role biomedical research can take is thinking outside the box to create devices and medications that are well-adopted by people at high risk for HIV transmission. Discussion participants suggested building more relationships with people of color in the LGBTQ community and learning about which interventions would be acceptable, and maybe even “sexy,” as suggested by our facilitator.
HIV prevention and treatment has come a long way…..and can be improved even more. 90-90-90.
When: We begin the 2017-2018 Season in early September, TBD
Where: 415 Westlake Ave N. at Kakao Chocolate+Coffee
Cost: $5 students and NWABR members; $10 general admission; in advance or at the door
Includes discussion, significant appetizers, espresso and one pint or glass of wine if 21+
Contact: Jen Wroblewski, email@example.com