Why the Affordable Care Act is Critical For Women Living With HIV


VIDEO: Our Reality: Women and HIV

Personal stories about HIV+ women and the work they are doing to teach others about preventing spread of the disease.

In January 2012, Women Organized to Respond to Life-threatening Diseases (WORLD) and 16 other organizations led by Lambda Legal filed with the Supreme Court a friend-of-the-court brief in support of the Affordable Care Act (ACA). This week, the Supreme Court held a three-day hearing on the constitutionality of health care reform. As we hold our breath to see how the Court will decide the fate of the ACA, now is a good time to remind ourselves of the importance of health care reform for women living with HIV and affected by HIV.

We know that the HIV epidemic thrives on a lack of quality, acceptable, affordable and accessible health care. We also know that discrimination in health care based on race, ethnicity, gender and gender identity, pre-existing conditions, and economic status is rampant. No one law can solve all of these problems but the Affordable Care Act is a first and necessary step toward reforming our health care system to better meet the needs of all people.

The full implementation of health care reform is vital to women living with and affected by HIV for a number of reasons:

1. Health care reform will increase access to health insurance by expanding the Medicaid program to all people who live below 133 percent of the federal poverty level (FPL) period – disability status will no longer be required.

This will have a hugely positive impact on the health of all people living with HIV since currently 29 percent of HIV-positive people have no health insurance whatsoever often because they have not become so sick as to be considered disabled for the purposes of Medicaid eligibility. Removing the cruel disability requirement from Medicaid eligibility for those living below 133 percent of the FPL is especially important for HIV-positive women. Women living with HIV, 76 percent of whom have children under 18 living in their households, as well as other care-taking responsibilities, cannot afford for their health to deteriorate in order to qualify for health care. Nor should they have to. Removing these barriers and expanding the Medicaid program is a key to reducing the health disparities experienced by so many women living with HIV.

2. Health care reform will bring down health care costs for women living with HIV. 1 in 2 women report delaying health care visits due to costs.

For a woman living with HIV, delaying vital health care needs and paying out of pocket costs for care can have a devastating impact on her wellbeing and her financial security. Health care reform will bring down health care costs for women by requiring insurance companies as well as Medicaid to cap out-of-pocket expenses, and ban insurance companies from dropping women from coverage when they get sick.

3. Health care reform will prohibit health insurance discrimination against women and against people with pre-existing conditions, including HIV.

Currently, women face shocking levels of discrimination in health care coverage. A 22-year-old woman can be charged insurance premiums 150 percent times higher than a 22-year-old man with a similar health history. Pregnancy and history of previous pregnancy are considered pre-existing medical conditions as is a history of intimate partner violence. Under current practice, women living with HIV can be denied health insurance solely as a result of their HIV status, forcing many to cobble together health care coverage from different sources such as ADAP, Medicaid, and Medicare. Navigating these programs can be time-consuming and difficult. Health care should not be a full time job! Getting medications covered requires women to live below a certain income level – in many cases, well under the poverty line.

The Act already prohibits discrimination against children for pre-existing conditions and in 2014 will prohibit sex and health status discrimination against all people. These protections will be a long-overdue fulfillment of HIV-positive women’s human rights.

4. Health care reform will provide greater health care security.

Less than 50 percent of women have the option of obtaining health insurance through a job and when jobs change, health coverage is often lost or broken. Studies have shown the importance of building trusting and long-lasting relationships with HIV medical providers. Women can’t afford to take breaks from medications because of a lack of coverage or unaffordable co-pays. Reliable, continuous health coverage with a trusted provider is essential for women living with HIV. Spotty insurance coverage makes this impossible.

Through the creation of state-based health insurance exchanges, the ACA will ensure that more women have dependable and continuous uninterrupted coverage for themselves and their families regardless of their employment status.

5. Health care reform will create a health care system that better meets women’s unique needs.

Currently, women are at the mercy of their health insurance provider for many essential and life-saving prevention services. With the implementation of the ACA, several basic and necessary services will be offered and covered by all health care plans for free. Some of these critical services include well-women visits that cover prenatal and postnatal counseling and care; HIV and STI testing and counseling; human papillomavirus testing; breastfeeding support, supplies, and counseling; and screening and counseling for domestic violence. That means these services will be offered to all women and that no co-pays and no deductibles can be charged for any of them! 

The provision of these prevention services, free of cost, mean a phenomenal health care win for all women and especially for women living with HIV. As we know, gender-based violence contributes to women’s’ vulnerability to HIV and hampers the wellness of women living with HIV.

The fact that the ACA recognizes the far-reaching nature of violence in women’s lives by insisting that intimate partner violence screening and counseling be a free service is an extremely important step in coming to terms with what our Attorney General Eric Holder says is the “staggering” amount of intimate partner violence experienced by women. Moreover, these prevention services for women can begin to address some of the discrimination HIV-positive women face in exercising their reproductive options. 

HIV-positive women are often not offered sexual and reproductive health care services such as prenatal counseling, STI testing, or human papillomavirus (HPV) testing because doctors assume that people’s sex lives end with an HIV-positive diagnosis. We know this is not true. Many women living with HIV have happy and healthy sex lives and need these types of reproductive health services as much if not more than other women in order to stay healthy.

The Affordable Care Act is an amazing opportunity to reform our health care delivery system. It lowers costs for insurance, prohibits gender and health status discrimination, provides continuous health care coverage, and prioritizes women by fully covering our key health care needs. It would be a national tragedy if the Supreme Court finds the bill to be unconstitutional because it requires all people to be insured. Expanding coverage to everyone should be our national goal, not our fear.

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  • amanda-lugg

    Though I fully support the goals of the ACA, I must take issue with this article’s references to how the ACA will ” benefit” and have “a huge positive impact”  on all women living with HIV, when the ACA will have absolutely no impact whatsoever on the lives of the thousands of HIV positive undocumented immigrant women in this country.

    As the author rightly states, “…it is a first and necessary step to reforming our health care system to better meet the needs of all people…” but we do a great disservice to those further marginalized communities by not acknowledging their vulnerability and exclusion by this proposed legislation.



  • brook-kelly

    Amanda, I totally agree. Because the ACA is under grave attack I wrote this article to highlight how the ACA benefits women by actually recognizing and addressing some of our core reproductive, economic, and general health care needs. Sadly, at this point in time I think recognition and creation of programs to address those baseline health needs are a hard won victory. But that said, leaving out immigrant women on several levels in the ACA was a total betrayal of the whole idea of health care reform and human rights for all people. Once we know the outcome of the SC case, and hoping that it will be positive, we definitely need to work together to expand the ACA to benefit all people in the US including recent and undocumented immigrants. Thanks for raising an often invisibilized issue.