Access Routes
Advocate Lailani Muniz Discusses the Impact of HIV on Women and How to Navigate Healthcare Barriers
by Chael Needle
If you look at the health disparities that exist—why Olga in the Bronx does not have the same access to healthcare and its potential positive outcomes as Marsha in Manhattan—you will soon uncover they intersect with and indeed are an effect of a larger engine of disparity: structural gender oppression, racism, transphobia, and economic oppression, among other social and economic harms.
Healthcare obstacles often make it more difficult for individuals to advocate for themselves. And, with less opportunity to stablize your health, it’s harder to thrive and it’s harder to work toward changing what needs to be changed so everyone benefits. That’s why some people living with HIV/AIDS have found power in collective action.
Like Lailani Muniz, a Bronx resident, Amida Care member, and HIV and trans rights advocate She is one of those advocates who has the time, energy, and willpower to speak out and work with others toward positive change. That’s not to say it has been easy to eke out this space; diagnosed as HIV-positive in 2006, she has faced difficulties trying to secure healthcare that works for her rather than against her.
In time for March, National Women and Girls HIV/AIDS Awareness Day, A&U was able to chat via email with Lailani Muniz about healthcare access in New York CIty and transgender rights issues across the nation. But first let’s look at some national statistics about the impact of HIV/AIDS on women.
In the United States, according to HIV.gov, women account for 23.45% of people living with HIV. One in nine women are unaware of their positive serostatus.
According to the Office of Women’s Health, a branch of the U.S. Department of Health & Human Services:
• Black women account for the largest amount of new HIV diagnoses. African-American women made up more than 61% of new HIV infections among women in 2015 but are only 14% of the female population in the United States;
• Hispanic women made up 15% of new HIV infections among women in 2015
HIV.gov reports that an estimated 14% of transgender women are living with HIV. Trans women of color are disproportionately impacted. According to the new National HIV/AIDS Strategy, “an estimated 44% of Black transgender women, 26% of Latina transgender women, and 7% of White transgender women have HIV. Transgender women experience stigma and discrimination and often encounter healthcare providers or clinics lacking knowledge of transgender issues or proper inclusive language. These all pose obstacles to HIV testing, prevention, and care that can be addressed among transgender women.”
Chael Needle:What are your top three issues when you think about women of color and HIV health? What needs to be addressed and why?
Lailani Muniz: The HIV epidemic has taken a disproportionate toll on people of color, particularly cis and trans women of color. In 2020, 95.1% of new HIV diagnoses among cis women in New York City were women of color. Transgender women are also deeply impacted by HIV and are estimated to be forty-nine times more likely to be living with HIV compared to the general population. In 2019, transgender women of color accounted for 91% of new HIV diagnoses among transgender women in New York City.
To address these disparities, we need to address three important issues: a lack of access to culturally competent and gender-affirming care; social determinants of health like poverty, unstable housing and high unemployment; and stigma and discrimination. These factors make it harder for women of color living with HIV to stay engaged in care, and for those who are HIV-negative to access prevention tools like PrEP.
What can organizations or institutions do to support women living with HIV/AIDS or at risk for acquiring HIV?
Organizations need to break down barriers to care. Right now, men in New York City are ten times more likely to take PrEP than women. This shouldn’t be the case. We need to improve outreach directly to underserved communities so more people know about PrEP and how to access it. And for people living with HIV, we need to support their health holistically. That includes addressing non-medical needs like housing, food insecurity, and unemployment, as well as physical and behavioral health services. We also have a lot more work to do to break down stigma and health disparities for trans women in particular. Gender-sensitivity training is an important first step.
What does an organization like Amida Care, which takes a comprehensive, coordinated approach to addressing the disparities that persist for New Yorkers of color, do right when it comes to addressing the healthcare needs of women, and particularly women of trans experience and those who identify as gender nonconforming or nonbinary?
Amida Care is a Medicaid Special Needs Health Plan for people like me who are affected by HIV. Its intensive, integrated model of care is about more than pills and doctors’ visits. This starts with creating a strong sense of belonging as a first step in a true partnership between health plan, provider, and member. They provide integrated services that address the whole health of their members, including primary care, hormone therapy, gender-affirming care, sexual health services, HIV treatment and prevention, substance use treatment, pharmaceutical services, and mental health services. It’s so important for trans New Yorkers to have access to gender-affirming surgeries so that they are living in bodies they feel are worth taking care of. Amida Care specifically tailors its services to the health needs of TGNC New Yorkers so they can live healthy, authentic lives.
Amida Care also advocates that more healthcare providers receive training in culturally competent care, and calls for all health insurance plans to mandate coverage of comprehensive gender-affirming care.
Is there anything we haven’t covered that you would like to cover?
Transgender Americans face systemic discrimination at almost every turn, from family members, at schools and at work, in the justice system, in access to housing, and in the healthcare system. Many trans Americans, myself included, have reported having to teach healthcare professionals, including their medical providers, about transgender care; have been refused treatment due to their gender identity; or have been harassed in a doctor’s office. I hope we can change this so less trans women experience the same trauma that I experienced.
This discrimination has resulted in unconscionable health disparities and destroyed the trust many people of transgender experience have in our healthcare system. It is important that we invest in making quality, whole-person healthcare accessible for people of trans experience, and that we vigilantly advocate for transgender rights, which are shamefully under attack in legislatures throughout the country.
For more infomation about Amida Care, New York’s largest Medicaid Special Needs Health Plan (SNP) that specializes in serving HIV-positive New Yorkers, log on to: amidacareny.org.
Chael Needle interviewed Muwonge Gerald of the Foaster Foundation for Healthcare Uganda for the March issue. Follow him on Twitter @ChaelNeedle.