The National Women and Girls HIV/AIDS Awareness Day (NWGHAAD) on March 10 marks the 15th annual observance day to raise awareness about how women can protect themselves and their partners from HIV. The awareness day, sponsored by the Office on Women’s Health (OWH), brings organizations and communities together to help women and girls protect themselves from HIV through prevention, testing and treatment. Each year HOCC provides an overview about the journey of women and their children living with and affected by HIV/AIDS. Last March was our last in-person program since COVID-19 began, and it marked forty years of the HIV/AIDS epidemic. It is important to note that it took twenty-six years from the beginning of the AIDS epidemic before NWGHAAD was announced as an official day of observance for women living with HIV/AIDS–read more below about women’s seemingly invisible journey.

National Women and Girls HIV/AIDS Awareness Day

Since 2006, March 10^th  is dedicated to the annual observance of the National Women and Girls HIV/AIDS Awareness Day (NWGHAAD) with the “goal to raise awareness” about how women can protect themselves and their partners from HIV through prevention, testing and treatment and sponsored by the Office of Women’s Health (OWH).

 Historically, now in the 41^st year of the AIDS epidemic, I would like us to take a moment and look at the years prior to the founding of the NWGHAAD and the challenges women faced living with HIV during the earliest years – often referred to as the “invisible epidemic” (The Story of Women and AIDS: The Invisible Epidemic  Gena Corea 1993). The real story is that women had been living with, affected by, and at risk for HIV since the beginning of the AIDS epidemic in 1980.  Certainly not at the same rate as gay men being infected with the HIV virus but women and their children were also among the first groups of people becoming HIV positive; accounting for 8% of all new infections by 1981.

In 1983, women began to organize in response to the emerging epidemic, both as part of a larger community mobilization effort with gay men, as well as in recognition of the epidemic’s impact on women.  In the same year, at the second National AIDS Forum in Denver, the Women’s AIDS Network was established, evolving into an advocacy voice and source of information on AIDS for women going forward. In 1985, the first test for detecting antibodies to the newly discovered virus was developed.  Later that year, CDC issued guidelines recommending HIV counseling and testing for “at-risk” pregnant women and women who may become pregnant — at-risk was defined as sex workers, intravenous drug users, Haitians, female sexual partners of men who have AIDS, and people who had received a transfusion of infected blood.  Routine counseling and testing for any woman not in a risk group was not recommended in these early guidelines. On March 19, 1987 the FDA approved AZT – the first drug approved for the treatment of AIDS – keep in mind diseases specific to women were not yet included in the AIDS diagnosis so women were excluded from AZT treatment.

 By 1988, women were identified as the fastest growing population infected with HIV; in response, San Francisco AIDS Foundation developed a women’s services program. In the same year, a Cosmopolitan Magazine article written by a psychiatrist told women that “they can have unprotected vaginal intercourse with an HIV-positive man if they have healthy vaginas”. The article also reported that “most heterosexuals are not at risk” – most women felt they were free from any risk! Later that year, the World Health Organization (WHO) established World AIDS Day on December first to bring attention to all about the worldwide challenges and consequences of the epidemic in order to create change. As the first decade of the epidemic closed and women were now reaching 10% of all people living with HIV, women and their specific health needs continued to be  excluded from both clinical trials and the official AIDS definition.

As 1990 unfolded, women living with HIV worldwide reached three million. Women’s needs and voices became more visible and heard starting with ACT-UP spearheading a massive protest at the Centers for Disease Control in Atlanta to expand AIDS definitions to include women specific diseases and a national “Speak Out” by women with AIDS  held in Washington, DC to protest the Social Security definition of disability, which discriminated against women and people of color. After a three-year laser focused initiative by the HIV Law Project the CDC expanded the definition of AIDS to include bacterial pneumonia, TB and stage III cervical cancer, as well as including recurrent vaginal candidiasis (yeast infections) to be added as a symptom of HIV. Additionally, the U.S. Congress enacted National Institutes of Health Revitalization Act, giving the Office of AIDS Research primary oversight and expanded involvement of women and minorities in all research.

These victories created a major shift in support and treatment for women. In 1997, women now accounted for the majority of all new HIV/AIDS cases diagnosed in the United States and more than half of HIV cases worldwide. Yet, the resources allotted to women for research, health services, education, and outreach remained sadly inadequate. In response, HOCC (Healing Our Community Collaborative) a 100% volunteer program for women, by women, and about women infected with, affected by and at risk for HIV/AIDS was founded by a small group of nurses and HIV positive women in Boston.  In 1998, the U.S. Supreme Court ruled that the Americans with Disabilities Act (ADA) to include the earlier stages of HIV disease, not just those who have developed AIDS. As this decade closed, over one million women died of AIDS worldwide, the highest number so far in a single year and it is reported that heterosexual transmission accounts for an estimated 62 percent of AIDS cases diagnosed among women.

As the 2000 decade began and many of the women who became HIV positive in the 1980’s who lived in fear of HIV disclosure and significant HIV stigma for decades were now becoming grandmothers and again facing more disclosures and fear of rejection from loved ones. One of those brave woman, Valerie Reeder-Bey along with her granddaughter Annisha Monic Wilburn published “My Grandma Has AIDS: Annisha’s Story” helping a new generation learn about acceptance from the heart. Women with AIDS began to openly report their exposure to HIV as heterosexual contact instead of injection drug use. Forty-five thousand women age 15 to 44-year-old were now living with AIDS in the United States;  and 63% of those women were African-American. In 2001, the U.S. Department of Health and Human Services releases: “A Guide to the Clinical Care of Women with HIV” which was the first manual specifically written about medical care for HIV-positive women. In 2002 US women were again identified as the fastest growing population of persons with AIDS. Also in 2002, the Well Project was formed, TheBody.com Web site introduced their women and HIV section, and then sadly, Massachusetts Governor Jane Swift announced a 4 million dollar budget cut for HIV/AIDS programs some targeted for HOCC to specifically support women in Boston.

By 2004, AIDS became the leading cause of death for Black women age 25-34 years and the third leading cause of death for Black women 35-44 years. In the same year, the Gay Men’s Health Crisis launched the Women’s Institute to concentrate its efforts and explore new approaches to HIV prevention, particularly for women of color;  the Global Coalition on Women and AIDS was launched to raise support and to energize and drive AIDS-related programs and projects aimed at improving the daily lives of women and girls; and the UNAIDS was established by women and men committed to mitigating the impact of AIDS on women and girls.

As 2005 opened the CDC reported women now accounted for 26% of the estimated 37,163 HIV diagnoses for adults and adolescents; the rate of HIV diagnosis for black women was approximately 20 times the rate for white women and 4 times the rate for Hispanic women; and Black and Hispanic women accounted for 81% of the women living with HIV/AIDS who acquired HIV through high-risk heterosexual contact. Michelle Scavnicky, Director of Education, stated that “The response to the epidemic of HIV/AIDS amongst the female population is highly limited in spite of alarming statistics, it is still perceived as a disease that can happen only to men”. HHS acknowledged that every 35 minutes a woman tested positive for HIV in the United States and 1 in 4 Americans living with HIV were women. The AIDS Institute strongly supported efforts to address the HIV/AIDS epidemic amongst the extremely vulnerable population of women and girls and encouraged them that it’s time to get tested.

On March 10, 2006, 26 years from the start of the AIDS epidemic the NWGAD was launched to “raise awareness about the increasing burden” of HIV/AIDS among women and girls. By the end of 2006, in Massachusetts, women now accounted for one third of all HIV infections and remained the fastest growing at-risk group for contracting the virus.

Fast forwarding, to 2014, some progress in the fight against HIV among women was noted with a decline of 40%  in new HIV diagnoses among all women. However, over the next few years,  even with a reduction in new cases and increased survival of individuals living with HIV infection, vulnerable populations remain disproportionately impacted. For women, heterosexual contact now reported as 87% of HIV diagnoses and when coupled with the  intersection of HIV/AIDS, violence against women and girls, & gender–related health disparities, women were and will remain a vulnerable population for HIV. Following these findings, one might assume women would remain a priority as long as HIV exists. However, the current Massachusetts budget starting in 2018 excluded women and girls as a priority population thus dramatically reducing funding targeted for women and girls.

As Abigail Adams memorably wrote to her husband John Adams in March 1776 urging him and the other members of the Continental Congress to not forget about the nation’s women when fighting for America’s independence from Great Britain – we ask you today and everyday – don’t forget the women living with, affected by and certainly at risk for HIV.