amfAR, The Foundation for AIDS Research

America Without HIV/AIDS in Women: A Wish for This National Women and Girls HIV/AIDS Awareness Day

By Susan Blumenthal, M.D., amfAR Senior Policy and Medical Advisor
Written in collaboration with Negar Avaregan, M.P.H.

Originally appeared as a post on The Huffington Post Impact Blog 

National Women and Girls HIV/AIDS Awareness Day -- March 10 -- provides us with an opportunity to recognize the impact of HIV on women and girls in the United States, and to encourage action to reduce the burden of this disease in this population group. With women accounting for one in four of the more than 1.1 million Americans living with HIV, and representing one in five new HIV diagnoses and AIDS-related deaths in the United States, we must do more to end HIV/AIDS in women and girls in America. [1]

This year marks the 20th anniversary of a pivotal moment in AIDS history: the inclusion of women in the Centers for Disease Control and Prevention's (CDC) case definition of AIDS. Prior to 1993, well into the epidemic, HIV/AIDS was defined as a disease affecting only men. Many research studies failed to include females as a unique target population, excluding women from clinical trials of HIV/AIDS medications and preventive interventions. The omission led to a rapid rise in the number of cases in women with HIV/AIDS. Some hospitals wouldn't even admit women to AIDS wards for treatment. On average, women were dying of AIDS in half the time as men did from the disease and researchers could not explain why. The lack of focus on women proved to be a major public health oversight and resulted in a startling development in the 21st century: Worldwide, there are now more women than men living with HIV/AIDS. Moreover, the proportion of AIDS diagnoses among women has more than tripled since 1985.

Within two decades, significant progress was made in the fight against this disease. Thanks to AIDS activists and women's health advocates, the government began recognizing that women were also devastatingly affected by AIDS. The CDC added women to its case definition of AIDS; Congress passed legislation that required women and minorities to be included in all research studies funded by the National Institutes of Health; and the Food and Drug Administration released guidelines to include women in trials on drug development, analyses, and assessments. In 1993, the Women's Interagency HIV Study (WIHS) was established to investigate the impact and progression of HIV in women. That same year, as the country's first Deputy Assistant Secretary for Women's Health in the U.S. Department of Health and Human Services (HHS), I established the Women and AIDS Task Force within the U.S. Department of Health and Human Services (HHS), and worked to ensure that women's health issues were a major focus of all of the federal health agencies and regional HHS offices across the country.

Yet despite this progress, women continue to be under-represented and even excluded in some areas of HIV research and care. For National Women and Girls HIV Awareness Day, it's time we "share knowledge and take action" towards ending AIDS in America for women.

Thirty years since the emergence of HIV in America, lifesaving medications have made HIV/AIDS a treatable condition for women in the U.S. and also have dramatically reduced transmission of the virus to partners and from mothers to their infants. Medications are also being used to prevent the disease in HIV-negative women who are at high risk of acquiring the virus. As a result of these interventions and a range of other behavioral and health care system improvements, there are now hopeful signs suggesting that new infections in the United States have declined among women by 21 percent from 2008-2010, including for African-American women who are at the highest risk. [2] To sustain this promising trend, continuing efforts to address the epidemic's impact on women, particularly women of color, are needed.

Women and girls need better information with messages targeted to vulnerable groups, particularly women of color, about avoiding risky behaviors. With 16 percent of HIV-positive women infected by injection drug use, lifting the ban on federal funding for syringe exchange programs is a critical measure. Efforts are also needed to combat the stigma and discrimination still experienced by many women who are HIV-positive.

Greater investment in behavioral research is needed to give women the tools they need to prevent HIV infection and to better adhere to medication regimens. Additionally, let's ensure that more women participate in clinical research and that female animals are used in basic science studies so that there is sex-specific information about treatment, diagnosis, prevention and cure.

Educational campaigns must reinforce the importance of routine testing for HIV that is now covered as a preventive benefit without any cost-sharing in the Affordable Care Act. And insurance companies participating in the ACA should cover the lifesaving medications and other interventions that women need to treat and prevent HIV infection.

For too long, women's health had been neglected at the research bench, in clinical settings, and in the halls of public policy. The national focus on women and girls that began two decades ago in our country's domestic and foreign health policy agendas are not only critical steps towards empowering women, reducing their risk of HIV infection, and supporting women living with HIV and AIDS -- they are also critical steps towards increased prosperity and health for all people in the U.S. and worldwide. But plenty of work remains ahead. On this National Women and Girls HIV/AIDS Awareness Day, let's commit to rectify the longstanding inequities in research, clinical practice, and the health care system so that women can someday live in an America and in a world without HIV/AIDS.

Rear Admiral Susan Blumenthal, M.D., M.P.A. (ret.) is the Public Health Editor of The Huffington Post. She is the Senior Policy and Medical Advisor at amfAR, The Foundation for AIDS Research in Washington, D.C. and also a Clinical Professor at Tufts and Georgetown University Schools of Medicine. Dr. Blumenthal served for more than 20 years in senior health leadership positions in the federal government in the Administrations of four U.S. Presidents including as Assistant Surgeon General of the United States, the first Deputy Assistant Secretary of Women's Health, and as Senior Global Health Advisor in the U.S. Department of Health and Human Services. She also was a White House advisor on health. Prior to these positions, Dr. Blumenthal was Chief of the Behavioral Medicine and Basic Prevention Research Branch and Chair of the Health and Behavior Coordinating Committee at the National Institutes of Health. She has chaired numerous national and global commissions and conferences and is the author of many scientific publications. Admiral Blumenthal has received numerous awards including honorary doctorates and has been decorated with the highest medals of the U.S. Public Health Service for her pioneering leadership and significant contributions to advancing health in the United States and worldwide. Named by the New York Times, the National Library of Medicine and the Medical Herald as one of the most influential women in medicine, Dr. Blumenthal was named the 2009 Health Leader of the Year by the Commissioned Officers Association and as a Rock Star of Science by the Geoffrey Beene Foundation. She is the recipient of the Rosalind Franklin Centennial Life in Discovery Award. Her work has included a focus on HIV/AIDS since the beginning of the epidemic in the early 1980s.

Negar Avaregan, M.P.H. serves as an Allan Rosenfield Public Policy Fellow with amfAR, The Foundation for AIDS Research in Washington, D.C. Negar earned her Master of Public Health degree from the Rollins School of Public Health at Emory University and her B.A. from UCLA in International Development Studies.


1. "Women and HIV/AIDS in the United States." HIV/AIDS Policy. The Henry J. Kaiser Family Foundation, Mar. 2013. Web. Feb. 2014.

2. CDC. HIV Surveillance Supplemental Report, Vol. 17, No. 4; December 2012. Data are estimates and do not include dependent areas.