HIV and Sexual and Reproductive Health in the District of Columbia, Recommendations From HIV-Positive Women
"I am somebody's mother, I am somebody's aunt, I am somebody's cousin and I am a human being and I want to be treated as such"
-- HIV-positive woman
Since the early years of the HIV epidemic, women living with and affected by HIV have fought to see their sexual and reproductive health concerns adequately addressed by researchers, funders and policymakers. Over the years, this struggle has seen both progress and challenges. At The Women's Collective (TWC), our experience providing case management and prevention services to women serves as a daily reminder that this issue is being overlooked to the detriment of women in our community. In late 2011, TWC conducted a series of focus groups to first determine the gaps in sexual and reproductive health services, as identified by Washington D.C.'s HIV-positive women themselves, and second develop a set of recommendations to address those gaps.
During the focus group dialogues, participants identified several challenges that affected their understanding of, access to, and utilization of sexual and reproductive health services. These were: 1) the need for mental health support; 2) the failure of healthcare providers to connect HIV-positive women to counseling services; 3) a lack of coordination among infectious disease providers and obstetricians/gynecologists; 4) a disconnect between community based organizations and healthcare providers; 5) financial burdens; 6) stigma within the broader healthcare field; and 7) the need for greater self-empowerment among HIV-positive women.
Participants readily suggested recommendations for policymakers, healthcare providers, community based organizations, and other HIV-positive women to address the challenges they identified.
Recommendations to address women's needs include:
- Increase Mental Health Support for Women Living With HIV
HIV-positive women need holistic services, especially when it comes to mental health needs. To truly make a difference in the lives of women living with HIV, increased funding is needed for mental health services as well as programmatic integration between HIV, mental health, and sexual and reproductive health services. This recommendation is further corroborated by research showing that HIV-positive women are more likely than women in the general population to have been exposed to traumatic events involving interpersonal violence such as sexual or physical assault. Additionally, greater attention must be paid to the value of de-stigmatization campaigns because stigma often creates a barrier to testing, treatment and care, a woman's value for and attention to her sexual and reproductive health, and can also wear on her mental health.
- Integrate Counseling Services During HIV Diagnosis
For many women, there was a substantial time lag between HIV diagnosis and entry into care. Many felt that counseling at the time of diagnosis may reduce the initial shock of diagnosis and thereby reduce the time taken to seek treatment. Providers should integrate counseling services into the diagnosis procedure to ensure that women have the support they need to access treatment as soon as possible. This is especially critical when diagnosing women during pregnancy. Pregnant positive women often feel that their health receives less priority than that of their unborn child. As a result, these women develop a resentment and distrust for the medical community.
Counseling services are crucial for women who experience difficulty disclosing their HIV diagnosis to friends and family members. In this respect, counseling is appropriate for both the woman herself and her family.
- Take Steps to Increase Coordination Between Infectious Disease Providers and Sexual and Reproductive Health Providers
There is a gaping and problematic divide between OB/GYNs and infectious disease providers. As a result, many women don't know how their reproductive health decisions impact their HIV treatment and vice versa. To give concrete examples, one woman expressed concern for how her contraception might be interfering with her HIV treatment protocol and another woman expressed confusion from having received conflicting information from her providers. With greater communication between infectious disease providers and sexual and reproductive health providers, physicians can help to fill this divide.
- Improve Relationships Between Healthcare Providers and Community Based Organizations
Many women found invaluable support and guidance in community based organizations (CBOs). These agencies are an opportunity for mentorship and community with other HIV-positive women, which can be especially crucial for those having difficulty balancing their sexual and reproductive health needs with their HIV treatment. Providers should ensure that newly diagnosed women know about the great resources available at local CBOs. Additionally, CBOs can be instrumental in helping healthcare professionals reduce the stigma that persists within the field and also assisting providers in improving their bedside manner.
- Improve Financial Support Services Available to Women Living With HIV
Many HIV-positive women have difficulty meeting their basic needs, such as food, transportation, and housing. Healthcare providers can help by asking their patients about their socioeconomic needs and provide information about food banks, shelters and other support services to their patients when applicable. This type of support can begin with providers keeping referral brochures in patient waiting rooms or simply connecting women to local CBOs.
- Fight Stigma
The stigma experienced by women occurred in the broader healthcare field -- in the pharmacy and other spaces outside the doctor's office. Women described hearing whispers and comments as they attempted to collect medication. This stigma added yet another layer of stress to their already overwhelming circumstances. As a result of stigma, many women forego treatment to avoid facing the hurtful and marginalizing reactions of the healthcare community. In this respect, actors in the healthcare field may actually contribute to the epidemic by deterring women from seeking treatment.
- HIV-Positive Women -- Take Charge of Your Sexual and Reproductive Health
Participants in the dialogue recognized their own potential for meeting their sexual and reproductive health needs. The participants encouraged other HIV-positive women to be proactive about their healthcare- to ask questions of their providers, seek peer support, and take greater control of their minds and bodies. All support services targeting women living with HIV should reinforce this point.
The Women's Collective hopes that these recommendations will reach the ears of policymakers, healthcare professionals, CBOs, and other women living with HIV. Through a concerted effort, all stakeholders can end the HIV epidemic affecting women, girls, and their families. The complete research results can be found here. TWC thanks The Center for Women Policy Studies for the opportunity to publish these findings.