A large percentage of HIV-positive U.S. women are from ethnically diverse, underserved communities. In many cases, they are living at or below the poverty line. For any and all of these women, healthcare coverage is often prohibitively expensive, or may be impossible to secure for reasons beyond cost. For example, they might not qualify for Medicaid, the Federal program that provides health coverage to those with low incomes or disabilities. The inability to secure healthcare coverage precludes such women from receiving treatment that is vital to their health, and affects the lives of those in their care.

According to the CDC, nearly 30% of people living with HIV do not have ANY healthcare coverage, and fewer than one in five people living with HIV has private insurance. However, the Affordable Care Act (ACA), which President Obama signed in 2010, will have a profound impact on people in the U.S. living with HIV, especially women.

For some, it’s been a long time coming. Gina Brown, now an HIV/AIDS advocate, regional organizer at AIDS United, and Board member of the Positive Women’s Network (PWN) USA, received her HIV diagnosis nearly 20 years ago while living in the south during her pregnancy, via a healthcare provider who said, “Miss Brown, you have AIDS and you are going to die.”

Gina recalls, "I was 28 years old, finally getting my life together... [but then], I planned my funeral."

But she didn’t die. And her illness had not reached the stage of AIDS. She was HIV positive. Had she not been pregnant, she might have been disqualified for Medicaid coverage she needed in order to care for herself and her infant.

Prior to the ACA, many HIV-positive, low-income women without children had to have a diagnosis of AIDS to qualify as “disabled” and be considered for Medicaid.  Thanks to the ACA, women in many states with incomes at a certain percentage below the poverty level now will be eligible for Medicaid without having to wait for an actual AIDS diagnosis too, or a “qualifier” such as pregnancy.

This really hits home for Gina, who provides trainings and workshops about Medicaid expansion to women in New Orleans—a region where many HIV-positive women live below the poverty line but currently do not qualify for Medicaid. “Women  in the South are overrepresented when it comes to HIV and underrepresented when it comes to [Federal] funding,” Gina says [source]. It is estimated that about 10 million uninsured women could qualify for Medicaid by 2014 based on their current income levels [source].

Gina said that an HIV diagnosis is no less simple for women who have private insurance. Many of her current clients prefer to take an HIV test at a clinic rather than at their doctor’s office, “because if you test positive and the insurance company finds out, they could drop you,” she said.

The ACA addresses this too, and Gina feels it will make a real impact. Those with pre-existing conditions such as HIV or AIDS can no longer be locked out of the healthcare market.

Naina Khanna, a 2010 appointee to President Obama’s Advisory Council on HIV/AIDS (PACHA) and executive director of the PWN-USA, agrees. She says that the stigma and discrimination of denying coverage based on pre-existing conditions was one of the biggest barriers to HIV-positive women accessing health care and services. 

To overcome this barrier, the ACA has created an insurance plan for those that fall into that category, and to date, more than 90,000 people have already enrolled in this program. “The Pre-existing Condition Insurance Pools have already been created, and insurance companies are now prohibited from dropping people when they get sick, so some of these changes have [already] begun to go into effect,” said Naina.

And soon, those who are low-income or even middle income will be eligible for Federal subsidies to help them buy health insurance coverage from new Health Insurance Marketplaces set to open in October 2013 [source].

Now I’m Covered, but How Much Will it Cost?

In many cases, women living with HIV—particularly HIV-positive women with families—are often forced to make the difficult choice to cut back on their own health care expenses.  To help overcome this barrier, the ACA will require insurance companies and Medicaid to remove lifetime and annual caps on insurance benefits, so women won’t be denied coverage just because they’ve reached an arbitrary ceiling.  

And, along those lines, coverage of prescription drugs needed to manage HIV or AIDS will now be greatly improved under Medicare, which will enable women to be better able to afford their medications.

HIV Prevention: Not Just a Medical Issue

According to Gina Brown, another challenge in the field of HIV is getting people to truly understand the social aspects of the disease. For example, there are a number of gender-specific, socioeconomic and environmental factors that place women and girls at a higher risk for contracting HIV. 

Naina said that after her 2002 diagnosis, she encountered more and more women living with HIV, and she realized “the race and class dynamics of the U.S. epidemic among women [are such that] most HIV-positive women in the U.S. are survivors of multiple traumas and complex oppressions.”

For example, women facing trauma such as domestic violence are often at much higher risk of contracting HIV.   Many low-income women also suffer from depression or are caught in the grip of alcoholism or substance abuse. 

 “Often times, women who have been victims of domestic abuse are depressed and lack the confidence needed to negotiate condom use with their partners, which leads to higher instances of HIV,” said Gina.  She added, “But free domestic violence counseling and screening under the ACA will help empower more women to leave those situations — which strengthens their mental health, which then strengthens their physical health by reducing the likelihood of contracting HIV.”

In addition to domestic violence, any history of sexual trauma, depression or poor self image, or certain risky behaviors that some women and girls turn to when struggling to make ends meet (such as drug or alcohol abuse or trading sex for money) can lower inhibitions and affect a woman’s perceived ability to negotiate condom use with their partner.

“Being able to talk to a doctor if you’re depressed will have a huge impact on HIV prevention,” said Gina. “Your self-worth affects the power dynamics in relationships.”

Gina is pleased that the ACA will provide more opportunities for prevention.  The ACA now provides for all new insurance plans beginning on or after 8/1/12 to cover screening and counseling for domestic violence, STDs, depression, and alcohol abuse, without copays or deductibles.

 “This is a major win for women,” said Naina. HIV screening and counseling for women will be covered without cost-sharing in most private plans, and Medicare will cover HIV screening for high-risk individuals.

Naina also applauds the changes made by the U.S. Preventive Services Task Force that have made HIV testing more widely available by making it a routinely recommended aspect of preventive care for women, but mentions that, “We still have a long way to go in making sure providers are comfortable having conversations about sex, period; and independently of those conversations, offering an HIV test to patients or clients regardless of perceived risk, assumptions, or knowledge about behavior.  The ACA provides an opportunity for important progress in this direction.”

Speaking of Provider-Patient Communication…

Gina said that some women who are HIV-positive actually shy away from medical care, because “Some providers don’t know how to work with women, much less women of color with substance abuse, and no one to watch their children when they go to the clinic.” She said seeing a healthcare provider who can relate to you (even if just on the outside) can help with a patient’s comfort level.

Likewise, according to Naina, “We are able to link a lot of HIV-positive women to their first [medical] visit or two, but then, as a system, we have trouble keeping them in care... Some of the common barriers for women include lack of transportation, especially in non-urban areas, competing priorities, like childcare or family responsibilities, and money issues,” she said. “We also hear that creating supportive spaces for HIV-positive women to receive care, including spaces with peer role models and peer advocates, is critically important.”

To that end, there are also expanded initiatives for cultural competency training for health care providers at community health centers, and this also will help better address the needs of the lesbian, gay, bisexual and transgender community.

Where to Begin?

So, as a woman with or without HIV, how should one navigate the new healthcare laws? “Take ownership of your own care,” said Gina. “Educate yourself. Find out all you can about the virus.” She is glad she did, because she went from planning her funeral to taking charge of her future -- and now, helping others.

For more information about the benefits of the Affordable Care Act for women living with HIV, visit: