HIV/AIDS Care Remains a Challenge, but the ACA Has Helped

Discovered in 1981, the human immunodeficiency virus (HIV) continues to affect nearly 1.2 million Americans, and more than 12% do not know they carry the virus. Disparities in access to HIV care exist among HIV-infected individuals. Specifically, these are racial and sexual-orientation based.

While HIV/AIDS can be prevented and successfully treated, barriers exist. These include:

  • Limited financial resources
  • Limited health care resources, such as in a rural community
  • Lack of transportation
  • Homelessness
  • Fear of opening up about their condition to their family
  • Lack of insurance coverage
  • Pre-existing condition exclusion
  • High cost of prescription medicines
HIV dot Org data


A recent KFF report highlighted the important role of Medicaid in the care of HIV patients, who make up 40% of Medicaid enrollees compared to 15% of the general population. Those infected with the virus do not usually have private insurance. This means HIV patients in Medicaid expansion states would have better access to care.

Prior to the ACA, Medicaid eligibility required an individual to be low income and also “categorically eligible”, meaning be pregnant or have a disability. This requirement disqualified a lot of low-income HIV patients unless they had severe infection and had developed AIDS. States that expanded Medicaid saw an increase in coverage for those with HIV from 39% in 2012 to 51% in 2014.

Medicaid expansion has been particularly useful for gay, bisexual and men who have sex with men, who were ineligible for Medicaid but remain most affected by the HIV epidemic.


Rolled out in 2010, the premise of the Affordable Care Act (ACA) was to make insurance more affordable and accessible, so a larger proportion of the population would be enrolled in some kind of a health plan. Following its implementation, the ACA helped eliminate or reduce barriers that HIV patients faced for years:

Medicaid expansion:

(see “An Important Role for Medicaid” above)

Free preventive services/screening: 

The ACA mandated preventive screening services, such as HIV testing, for everyone in the 15-65 years age group and those at high-risk in other age groups, without any cost to the individual (copay or deductible). This is vital, since more than 12% of individuals with HIV in the U.S. are unaware of their infection, and screening can help them start their treatment early.

Cost of care: 

Private insurance plans would charge high premiums for these patients because of their health status, in addition to annual and lifetime limits on coverage, meaning their insurance plan would only cover a predetermined maximum cost of care. The ACA eliminated this maximum.

Exclusion due to a pre-existing condition: 

HIV was considered a ‘pre-existing condition’ by insurance companies. For those whose employers did not offer health insurance, health plans could exclude them from enrolling in an individual plan on the basis of them being HIV positive. Marketplace plans can no longer prevent an individual from enrolling because they have some pre-existing condition.

Ryan White: 

Post-ACA, there was also an increase in the number of people turning to the Ryan White HIV/AIDS program (which was first authorized in 1990) for assistance, in both Medicaid expansion and non-expansion states. This included people who had private insurance as well. The Ryan White program offers services such as case management, transportation assistance, and longer more complex provider visits.

Lowering the cost of prescription drugs: 

The ACA helped close over time the “donut hole” or coverage gap faced by seniors enrolled in Medicare Part D, which covers prescription drugs. Following the ACA, Medicare beneficiaries get a 50% discount on their share of the prescription drug cost during the coverage gap, which is a big saving for covered HIV/AIDS brand-name drugs. Further, those who participate in the AIDS Drugs Assistance Program (ADAP) can claim those benefits as a contribution to their out-of-pocket spending limit, which helps them get through the coverage gap even quicker.

Comprehensive care: 

Under the ACA, insurance plans in individual and group markets have to offer a minimum set of “essential health benefits”, which includes prescription drug services, hospital inpatient care, lab tests, services and devices to help manage a chronic disease, and mental health and substance use disorder services. All of these are important for access to HIV care.

Educating the Health Care Force on Caring for LGBTQIA+: 

The ACA carved out resources to help train the health workforce to care for those who are disproportionately affected by HIV, namely the LGBTQIA+ community, through the creation of the National LGBTQIA+ Health Education Center. The center provides educational resources to health care organizations for HIV prevention, testing, and treatment in this population.

Additional Resources for HIV Patients

  1.     Access, Care, and Engagement Technical Assistance Center to help people with HIV access and effectively use their health coverage:
  2.     NY Department of Health’s Services for those with HIV:
  3.     Federal resources to help pay for HIV care and treatment:

Surabhi Dangi-Garimella, Ph.D.

Surabhi Dangi-Garimella, Ph.D. is a biologist with academic research experience, who brought her skills and knowledge to the health care communications world. She provides writing and strategic support to non-profit groups via her consultancy, SDG AdvoHealth, LLC.

From the Editor:

The first National Black HIV/AIDS Awareness Day (NBHAAD) was marked in 1999 as a grassroots-education effort to raise awareness about HIV and AIDS prevention, care, and treatment in communities of color. This annual observance is an opportunity to increase HIV education, testing, community involvement, and treatment among black communities.


To learn more about the journey of people with HIV/AIDS give a read to Brian’s story on Kate Across America. Brian emigrated from Mexico in the 80s when the US had treatment options while Mexico did not.

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