March 10th was National Women and Girls HIV/AIDS Awareness Day. As I sit here a reflect on the state of HIV among women and girls, I am very disheartened. There is still so much work to do to around empowering women and girls to reduce their risk for HIV. According to the Center for Disease Control and Prevention, over 280,000 women aged 13 and older are living with HIV in the United States, and 7,402 women were diagnosed with HIV in 2015. Black/African American women continue to be disproportionately affected by HIV, accounting for 61% of recent diagnoses but only 13% of the female population. Though most women who get HIV get it through vaginal sex, women who inject drugs are also at risk for HIV.
With these alarming statistics, it is apparent that although the current prevention messages, programs and interventions are not working. The miseducation and misinformation that exist, about HIV and AIDS, within our society is distressing. In addition, the unsympathetic and insensitive tone that exist within our society when it comes to HIV and AIDS helps to continue to create an environment where people are suffering in silence. The lack of education and fear breeds judgement and only continues to further stigmatize individuals who are infected and affected by HIV.
Once viewed as an individual problem, HIV is now also being viewed as social, economic and/or structural barrier that women must navigate in order to receive quality services and treatment. Race and ethnicity, alone, are not risk factors for HIV infection. Policy, poverty, cultural, social and structural influences are associated with higher HIV/AIDS incidence among Black and low income women. Black and low income women at high risk for HIV often sustain the brunt of racism, gender inequality, culturally and social constructed gender roles, discrimination, poverty, lack of access to health care, lack of transportation, economic inequalities, lack of childcare, lack of stable housing sexual violence, etc.
These social determinants may be influencing factors which can contribute to their decreased ability to reduce their risk for HIV transmission. Ending the HIV epidemic will require developing interventions that will empower women and their families with the knowledge, skills and tools that will help them get out of poverty, offer economic stability, provide secure stable housing, and secure access to health care.
Suffering in Silence: Who’s in? Who’s out?
In the early days of the HIV/AIDS epidemic because it was characterized as a gay, white man’s disease, researchers and pharmaceutical companies began research and testing based on their disease manifestation and progression. Black and low income women living with HIV were unaccounted for in prevention efforts, clinical research and treatment efforts; although the rates of infection were continuously increasing. For example, women living with HIV were excluded from experimental drug testing, clinical research trials and denied financial assistance because eligibility was based on men who were living with HIV. The Center for Disease Control and Prevention (CDC) and the National Institutes of Health’s (NIH) definition of AIDS was originally based on the clinical research and data based on the disease progression and manifestation in gay white men; who had been the basis for research. The problem with this definition is that it did not account for the differences in disease transmission, manifestation, progression and/or unique characteristics of HIV specific to women. As a result, policy makers, advocates, physicians and other care providers did not understand nor know how to treat women living with HIV.
The limitations of this definition contributed to HIV- related morbidity in women.
Failure of the CDC and NIH to address and support comprehensive studies for HIV manifestation in women made it extremely difficult for women to get early diagnosis and treatment, prevention education, Social Security Supplemental cash income benefits, access to Medicaid coverage and federally funded HIV initiatives for women. The definitions have become symbolic of systematic neglect of women’s needs and concerns in the HIV/AIDS epidemic: women are still forgotten in research agendas, and lack access to care and early intervention.
Finally, after strong and collective advocacy efforts by community-based organization (CBO), AIDS service organizations (ASO) and HIV advocates and those living with HIV, the CDC and NIH expanded the AIDS definition in 1993 to include language that addressed female specific symptoms, nevertheless many of the HIV policies and programs that were created and implemented still failed to address the unique challenges, social determinants and structural barriers that women faced. As a result of this lack of representation, women continued to suffer in silence and isolation. Among those suffering in silence were HIV positive advocates and trailblazers like The Women’s Center for Women’s Policy Studies (CWPS), Patricia Nalls (The Women’s Collective), Dázon Dixon Diallo (Sister Love, Inc.) and Rae Lewis Thornton. Together with the assistance of allies such as Bettina Campbell (YOUR Center), Congresswoman Maxine Waters, Barbara Lee and Debra Fraser-Howze (National Black Leadership Commission on AIDS), who would not back down and kept women’s HIV issues at the fore front; much progress was made. It was because of their tenacity and perseverance, that HIV and women’s concerns were given much consideration.
Now granted we have come some long ways in the field of HIV and AIDS. And yes, people are living longer and managing to live a quality life within the spectrum of the disease, as results of HIV treatments, I cannot help but think that we are still missing the mark when it comes to HIV efforts among women. Despite this progress, the CDC still emphasizes that women, especially Black women continue to bear the brunt of the epidemic. To begin seeing a reduction in the numbers of women becoming infected with HIV and other STIs, we need to begin to rethink how we see HIV. There still needs to be a sense of urgency placed on HIV outreach, education and prevention messages.
We must do a better job of implementing holistic, comprehensive and culturally relevant programs and interventions that address the entire woman, including her environment and her lifestyle. All programs/interventions must incorporate knowledge, skills and tools in all the Dimensions of Wellness: physical, mental, emotional, spiritual, social, and economical. In addition, such programs and interventions should also address institutional, political, social, cultural and economic barriers that women must face in order to access quality health care.
We must come together as women, wives, sisters, daughters, aunts, cousins and friends, and begin to take control of our sexual health! We must get informed, get tested, build skills, and change behaviors. Our lives matter! We must demand more! Advocate for better access to health care! We must love ourselves enough not to settle for someone else’s man! We must support each other and honor sisterhood. We must set a standard from which we will not deviate! We must take back our families and communities! We must break the cycle! It begins with us! It must begin with us! And it begins right here and now! “The Best Defense Is a Good Offense.” Take steps today to protect yourself and your partners against HIV.