Although millions of U.S. women access sexual and reproductive healthcare every year, few of those women are ever offered an HIV test. Similarly, data shows that HIV-positive women in the U.S. receive little or substandard sexual healthcare and information about reproductive options. With appropriate medical care, treatment, and supportive services, mother-to-child transmission has been virtually eliminated such that women living with HIV can bear HIV-negative children.
Reproductive justice for HIV-positive women means upholding our full spectrum of sexual and reproductive rights, including our right to choose when and how to be sexual and when or whether to have children and the information to make an informed decision. Reproductive Justice also extends to parenting and custody rights which are often taken away from women living with HIV.
BACKGROUND: The majority of women seeking sexual and reproductive health services report not receiving any information about HIV or not being offered an HIV test though they may be at elevated risk for acquiring HIV. HIV-positive women receiving HIV-related medical care frequently are not offered sexual and reproductive health services or are referred elsewhere, even though HIV-positive women are at elevated risk for gynecological complications. Incarcerated women do not have access to necessary sexual and reproductive health services such as cervical and breast cancer screenings and pregnancy care. Studies show that infants born to incarcerated women have a lower birth weight than that of other women. In some cases, HIV-positive women have been coerced to have abortions or forcibly sterilized due to HIV-related stigma. Birth control pills are not covered by public health insurance payers – so women have to pay out of pocket. This is an unaffordable expense for many women, which sometimes leads to permanent and irreversible forms of birth control such as tubal ligation or a hysterectomy.
“I made all reproductive decisions on my own. For example, I had a tubal ligation, and have since gotten married to an HIV-negative man who has no children. Big regret.” – PWN Human Rights Survey, 2010 “I was told by several doctors to abort the pregnancy. I was almost in my 2nd trimester before I knew I was pregnant. I ran out of many a doctor’s offices in tears after being told I was ‘selfish’ or ‘if that were my wife, I’d make her have an abortion.’ ” – PWN Human Rights Survey, 2010CHALLENGES:
- Lack of HIV information & HIV Testing
- The majority of women seeking sexual and reproductive health services do not receive HIV information or are not offered an HIV rapid test though they may be at increased risk for HIV.
- HIV-positive women receiving care at HIV-specific clinics or with HIV providers receive few reproductive health services or are referred elsewhere.
- Inadequate services for HIV-positive incarcerated women. In particular, pregnant HIV-positive women are rarely provided with specialists and services in incarceration settings.
- Discrimination, bias and stigma in healthcare settings leads to reproductive rights violations.
- Sex-negativity: HIV-positive women are not treated as sexual beings with the right to a full, satisfying sexual life.
- Informed consent is not upheld. Women are sometimes tested for HIV during pregnancy, and HIV-positive women are sometimes sterilized during labor and delivery, without informed consent.
- Family planning options are limited. As an example, birth control pills are not included on the ADAP formulary preventing women who qualify for ADAP from accessing family planning options.
- Insufficient provider expertise and inadequate women-centered research. HIV-positive women are at increased risk for gynecological complications, yet these symptoms are often overlooked by medical providers. Additional research is needed on the ways in which HIV medications affect a woman’s health throughout the lifespan.
- Discrimination in custody cases and court proceedings. HIV-positive women’s rights to parent are often not upheld, or ability to parent is questioned due to HIV status.In 2009, persons aged 20-24 years were the largest percentage, 15%, of all new HIV cases. – Centers for Disease Control and Prevention, 2009 Surveillance Report
- Sexual and reproductive health services should be well-integrated with HIV services so that the needs of the whole HIV-positive woman are met.
- Provide quality and comprehensive sexual and reproductive health services including HIV prevention mechanisms in the jail and prison systems.
- All women have a right to information, voluntary, informed consent before any HIV test or medical treatment or procedure is performed, confidentiality of HIV status, comprehensive and quality medical care, and the right to choose when and whether to have children and the information necessary to make an informed decision. These rights must be upheld without stigma or discrimination.
- Include family planning options, such as the birth control pill and intrauterine devices, on medication formularies including ADAP. HIV providers serving women should receive ongoing training in HIV-positive women’s basic sexual and reproductive healthcare needs, as well as HIV-positive women’s options for fertility enhancement, risk-reduction for sero-different couples, conception, and childbearing.
- To prevent discriminatory outcomes in legal cases involving HIV-positive women or parents, the civil and criminal justice system – including judges and attorneys – must have up to date and accurate information on living with HIV and HIV transmission. This can help to prevent breaches of justice that sometimes occur in child custody cases where one parent is HIV-positive, or when women’s reproductive rights are unfairly burdened due to their HIV-positive status.