Ending the Epidemic in Women and Girls

By Johanne Morne March 29, 2018

New York State is committed to ending the epidemic in all populations.  Cisgender and transgender women and girls are among the key populations that are at risk and most affected by contextual factors and health disparities. 

Prioritizing interventions towards cisgender and transgender women and girls is vital to ending the epidemic (ETE). Through utilization of a combination of New York State (NYS), HRSA Ryan White Part B, and Centers for Disease Control (CDC) Cooperative Agreement funding, we are seeing significant reductions in HIV diagnoses.  The number of people newly diagnosed with HIV in NYS has fallen to historic lows, proving that efforts to End the Epidemic are making a significant impact.  In 2016, for the first time, fewer than 3,000 people were diagnosed.  This represents a nine percent decrease from 2015 -- more than double what was seen in the five years leading up to the Ending the Epidemic initiative.  

The 2016 data show a 16 percent decrease compared to 2014, the year the plan to End the Epidemic was announced.  Notably, groups that have historically been disproportionately impacted by HIV all experienced decreases in new infections. For example, notwithstanding the disparity noted in the graph above, the number of new HIV diagnoses among women decreased 25% from 2012 to 2016.   The number of new diagnoses among non-Hispanic Black women decreased 27%.  This decrease exceeds the decrease observed among men during this timeframe, which was 21%.  
To address the specific needs of women, the NYS Family Focused HIV Health Care for Women initiative integrates and coordinates women’s and children’s services and emphasizes early treatment, continuous care, and support for family issues.  The Maternal/Pediatric HIV Prevention and Care Program ensures appropriate care for pregnant women to prevent transmission to their infants.  The State’s Uninsured HIV Care Programs provided health care, medications, and insurance coverage for almost 6,000 women in 2017.  Through AIDS Institute service contracts, about 35,000 females were served in 2017, with about 9,000 under the age of 24.  In 2016, more than 2,000 transgender women were served through NYS AIDS Institute contracts.  ETE funding has supported the implementation of health care programs specifically for transgender persons.  NYS just issued a procurement that includes funding for comprehensive prevention and related services for women and young women, including transgender and gender non-conforming persons, in communities of color.  The procurement incorporates the recommendations in the ETE Blueprint.

One of the most significant accomplishments in NYS is the prevention of perinatal transmission. For the first time since the beginning of the epidemic, there were no cases of HIV transmission from mother to child in New York State for an 18-month period between 2014 and 2016.  In addition, there were no cases of HIV transmission from mother to child reported for a 13-month period between October 2016 and December 2017, when there was one transmission.  Elimination of mother-to-child transmission is not a one-time achievement.  To sustain this trend, we must continue to prioritize the resources and collaborations that support our efforts.   

Although tremendous strides have been made, there is much work to be done.  More emphasis is needed on increasing utilization of prevention medications among women.  Last June, the NYS AIDS Institute coordinated the PrEP for Women Forum, which convened stakeholders from across the state to discuss the unique issues associated with engaging women in PrEP.  Among the goals of the forum were disbanding misconceptions, while focusing on increasing awareness of, changing attitudes toward, and expanding access to PrEP.  Reframing the conversation and altering preconceived notions can assist women and girls who are vulnerable to HIV transmission to understand their options.  The NYS AI Women’s Prevention Initiative supports activities designed to increase HIV/STD/HCV testing, increase access to and use of PrEP and PEP, and improve the quality of women’s lives through a comprehensive prevention approach. In April 2018, the NYS AIDS Institute will facilitate a similar dialogue at the PrEP for Transgender Women: Successes, Challenges & Opportunities forum. Stakeholders will come together to discuss and respond to the identified barriers for transgender women and PrEP.  

A necessary step towards ending the epidemic in women and girls is the reduction of stigma.  At our December 2017 ETE Summit, I issued a call to action, which was subsequently widely distributed via a “Dear Colleague” letter.  The call to action includes a charge to take steps to eliminate the long-standing problem of stigma.  Our quality of care program has engaged clinical sites in employing quality improvement practices to address stigma, and in September 2017, the NYS Department of Health (DOH) endorsed the Prevention Access Campaign’s consensus statement on Undetectable=Untransmittable (U=U).  U=U represents a powerful platform for conveying the importance of HIV treatment and removing internalized stigma.  The NYS AI has issued a stigma survey, which is currently being administered to health care staff to measure levels of HIV-related and key population-related stigma in the health care practice setting.  The prioritized populations include cisgender and transgender women. 

The ETE initiative in NYS was driven by the community, and partnerships with consumers, providers, community leaders, advocacy groups, and other key stakeholders have been relied upon to inform the design of ETE policies and programs.  Realistically, to succeed in ending the epidemic in women and girls, New York needs the input and feedback of cisgender and transgender women and girls to best meet their needs and allocate resources properly.  An ETE Women’s Advisory Group convened in 2017 informed the state and recommended implementation strategies in support of the ETE Blueprint. The Advisory Group report includes strategies speaking to systemic improvements, service integration, addressing violence against women, PrEP and PEP access, correctional settings, and much more.  In addition, the NYS AIDS Institute convened a group of transgender and gender non-conforming (TGNC) persons that was diverse in geographic location, age, gender identity, gender expression, race and ethnicity. The purpose of the TGNC Advisory Group was to advise the AIDS Institute on specific actions it should take to address HIV disparities in TGNC communities in order to fulfill the broad recommendations outlined in the ETE Blueprint. 

The theme of NYS’s 2017 ETE Summit was “No Population Left Behind.”  To achieve that goal, we must continue to tailor services to ensure they are culturally appropriate and responsive to the needs of all.