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Pride and Ending the HIV Epidemic in New York This Year


pride epidemic

June is Pride month (photo: Michael Appleton/Mayoral Photography Office)


Octavia Leona Kohner is a former sex worker and a survivor of sexual assault. As a woman of transgender experience, she’s 49 times more likely than the general population to be HIV positive. But Octavia is HIV negative. She’s an example of the tremendous progress we’ve made in our effort to end the HIV/AIDS epidemic in New York State -- an epidemic that has disproportionately impacted the LGBTQ community and communities of color.

Six years ago, New York set out to end HIV by 2020, and thanks to Governor Cuomo’s leadership, we are on the verge of becoming the first state in the country to do so, 10 years before the national goal of ending the epidemic by 2030. The most recent data from the New York City Department of Health and Mental Hygiene shows that in the first half of 2019, 876 New Yorkers were newly diagnosed with HIV, down from 984 for the same time period the previous year. That’s progress we can be proud of, and Pride month is a time to celebrate our successes. But there is still more work to do.

As with COVID-19, communities of color are the hardest hit by HIV. Institutional racism and social, economic, and educational inequities lead to stark health disparities. In the first half of 2019, Black (45.8%) and Latino (37.4%) people still represent a disproportionate share of new diagnoses in New York City. And transgender people were one of the only groups to see a slight increase in new HIV diagnoses in New York City from 2017 to 2018. Most new diagnoses come from zip codes with above average levels of poverty.

The HIV and COVID-19 crises reaffirm the vital importance of fighting for health-care access,  racial justice, and health equity. For example, pre-exposure prophylaxis (PrEP) is a medication that is 99% effective in preventing HIV transmission, yet it isn’t reaching many who need it most. Medicaid Special Needs Health Plans are specifically designed to provide care to people who live with or are placed at elevated risk for HIV. Octavia is a member of Amida Care, New York’s largest Special Needs Health Plan, which connects HIV-negative members like Octavia to PrEP.

When Octavia started on PrEP, she spoke with an Amida Care pharmacist who helped dispel misinformation about the treatment and answer her questions. Some trans people fear that PrEP may interfere with or interact poorly with their hormone therapy, so having a trusted, readily available resource for accurate information is critical. Amida Care’s pharmacy team follows up regularly with Octavia to make sure she’s adhering to her treatment and responding well. She has also accessed mental health services through Amida Care.

Amida Care works closely with members to create personalized care plans based on each individual’s unique needs, connect them with culturally competent providers, and support them to stay in care and take their medications. Amida Care’s Live Your Life wellness program gives members access to free events to feel good in their own body.

Thanks to medical advancements, HIV can now be treated with just one pill a day, but many people living with HIV today are taking additional medication to manage other chronic conditions including hypertension, diabetes, depression, and addiction. Special Needs Health Plans like Amida Care provide wraparound care to ensure members get the medications they are prescribed and adhere to their personalized care plan. Amida Care also checks that there are no adverse side effects or potentially bad interactions of multiple prescribed medications, and helps to streamline administrative processes for providers.

Pharmacy care management is critical to improving health outcomes, avoiding costly hospitalizations and reducing the number of new HIV diagnoses. As a result, many people living with HIV have become healthier and virally suppressed, which means they are unable to sexually transmit HIV to others. The viral load suppression rate among Amida Care members in 2005 was 60% -- today it’s 80%.

Octavia has not only remained HIV negative, but she works to encourage others to consider PrEP and take control of their sexual health. She’s found a community that supports her in living her most authentic life, and she works to support others as a gender and sexuality consultant. 

We have made great progress toward reaching our goal of ending the HIV epidemic in New York. Special Needs Health Plans will continue to do our part - through the end of 2020 and beyond - by working in the hardest hit communities and improving health outcomes for all. 

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Doug Wirth is the President and CEO of Amida Care. On Twitter @AmidaCareNY.

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Tags: HIV/AIDSLGBTQpublic healthPride