Many HIV Patients Not Well Informed About Obamacare, Many Still Uninsured

More than half of 406 patients at an HIV center in Omaha, Nebraska, felt they didn't understand the Affordable Care Act (Obamacare) well enough to make good decisions about this national health insurance plan.1 About one quarter of participants were uninsured at the time of this survey, which occurred just as Obamacare was becoming available. But the 5-month study also found improving understanding of the Affordable Care Act over time.

Before Obamacare took effect in October 2013, up to 30% of people with HIV had no insurance.2 Only 17% of HIV-positive people had private insurance, compared with 65% of everyone in the United States.2,3 The Affordable Care Act (the official name of Obamacare) aims to help everyone in the United States -- with or without HIV infection -- find health insurance. The law does not allow insurers to deny coverage because of previous conditions (like HIV infection), it bans annual and lifetime limits on coverage, and it limits the out-of-pocket costs any individual can pay. In states that agreed, the Affordable Care Act also expanded Medicaid, the government insurance program for low-income people of any age.

Because of these provisions, the Affordable Care Act should help many uninsured people with HIV get insurance and stay insured. Reliable health insurance is essential for people with HIV, who must see their provider regularly, get certain lab tests, and pay for lifelong antiretroviral therapy.

Because the Affordable Care Act is new, because its initial rollout got slowed by internet problems, and because deciding on an insurer can be complicated, many people were confused about how the Affordable Care Act works and about how to use it to get coverage. To gain a better understanding of knowledge and attitudes about the Affordable Care Act among HIV-positive people around the time of its rollout in 2013-2014, researchers at the University of Nebraska Medical Center conducted this study.

How the Study Worked

Researchers invited HIV-positive English-speaking adults to complete a 23-item survey about the Affordable Care Act during regular clinic visits. Everyone was receiving care at the University of Nebraska Medical Center HIV clinic in Omaha, the only clinic in the region focused on HIV infection. People completed the survey between November 18, 2013 and March 31, 2014, during the initial sign-up period for insurance through the Affordable Care Act.

Besides asking questions about the Affordable Care Act, the survey asked for basic information like age and education, about sources of information related to healthcare reform, and about how people currently paid for their healthcare.

The researchers used standard statistical methods to evaluate responses to survey questions, both for the whole survey group and for subgroups determined by age, education, employment, insurance, and income. They also assessed changes in knowledge or perception about health insurance over time.

What the Study Found

Of the 406 people who completed the survey, 86% were between 27 and 59 years old, 61% white, and 25% black. (The survey did not ask respondents if they were men or women.) Two thirds of survey respondents had more than a high-school education, though half had an annual household income below $20,000 and only 18% had an income above $50,000. While 62% of survey respondents had full- or part-time work, 14% were unemployed, and 25% were students, homemakers, retired, or disabled. Nearly half of these people, 45%, had private insurance, 23% used Medicaid and/or Medicare, 27% had no insurance, and 6% did not know their insurance status.

Almost three quarters of people who answered the survey (71%) said they did not have enough information -- or didn't know if they had enough information -- to make informed decisions about the Affordable Care Act. Majorities of survey respondents did not understand specifics about healthcare reform related to the Affordable Care Act -- 53% did not know its purpose, 62% did not know it made insurers cover people with preexisting conditions like HIV, 63% did not know Nebraska would not expand Medicaid with the Affordable Care Act (as most states did), and 75% did not know the Ryan White Care Act would not be eliminated when Obamacare took effect. (The Ryan White Care Act supports care for low-income, uninsured, and underinsured people with HIV and their families.) Knowledge about these issues was highest among whites, people who graduated from college, employed people, and people with private insurance.

A large majority of people (79%) did not think they would benefit from healthcare reform or did not know if they would. While 36% thought their access to health insurance would improve with healthcare reform, 21% thought it would get worse and 43% didn't think it would change (Figure 1). Only 20% believed the quality of their healthcare would improve with changes in insurance laws, 20% thought it would get worse, and 60% thought it would stay the same (Figure 1).

HIV Patients' Views on Insurance Access and Healthcare Quality With Obamacare
HIV Patients' Views on Insurance Access and Healthcare Quality With Obamacare Figure 1. In a survey of 406 HIV patients in care, the largest proportions foresaw no change in access to health insurance (43%) or quality of healthcare (60%) with the Affordable Care Act (Obamacare). A little more than one third (36%) thought insurance access would improve, and only 20% thought healthcare quality would improve with the Affordable Care Act.

People with a grade 8 education or less proved more likely to believe they would benefit from healthcare reform (57%) than people who completed grades 9 through 12 (16%), people with some college (19%), or people who graduated from college (30%). Unemployed people were more likely to perceive they would benefit from healthcare reform (30%) than were employed people (18%), or students and retired people (26%). And people using Medicaid and/or Medicare insurance were more likely to see personal benefit in healthcare reform (37%) than were people with private insurance (23%) or uninsured people (20%).

Perceived knowledge of healthcare reform did not increase significantly over the 5-month study period. But the proportion of people who thought they would or would not benefit from healthcare reform did increase significantly over time when compared with the proportion of people who did not know if they would benefit.

What the Results Mean for You

This large study of HIV-positive people in care found that few believed they had enough information about health insurance coverage through the Affordable Care Act (Obamacare), and even fewer believed they were likely to benefit from the Act. Researchers who conducted this study expressed surprise at these results because (1) clinic workers made focused efforts to inform patients about the Affordable Care Act, including special educational sessions, and (2) HIV-positive people do stand to benefit from insurance coverage available through the Affordable Care Act, because high proportions of people with HIV do not have private insurance, which the Act makes available, and because the Act includes specific provisions to help people with preexisting lifelong diseases like HIV infection.

Uncertainly about the Affordable Care Act is also surprising because the survey took place during rollout of the Act, when media saturated the country with reports about the new law. And most people in the United States today have ready access to news through television and via computer or smart phone access to the internet. Although a study in a single HIV clinic may not reflect what's happening across the United States, access to important health news does not vary much from region to region in such a media-conscious society. In a national poll conducted over the same period, the authors note, only 20% of households reported being unsure of their view about the Affordable Care Act, compared with 58% in the Omaha HIV clinic. Even among surveyed people who graduated from college, 41% said they did not know if they would benefit from the new law.

Lack of knowledge and uncertainty about benefits of the Affordable Care Act may have improved after the 5-month period of this study, as people across the country became more familiar with how the law works and as growing numbers of people got insurance through the Act. The study period covered the initial rollout of the internet-based Affordable Care Act system, which suffered technical glitches that frustrated thousands applying for health insurance. Those problems may have contributed to uncertainty about whether the Affordable Care Act would help people. Later, the Act faced two challenges in the United States Supreme Court, which decided in both cases to preserve the Act as written. But controversy surrounding those cases probably unsettled many people who acquired insurance through the Act or planned to.

Finally, for people without health insurance provided by their employer, understanding and signing up for the most appropriate policy can be difficult, regardless of education level, income, or social status. It takes time to understand what options are available, how much they cost for what kind of coverage, and what plans will work best for an individual. The place to start getting information about health insurance -- whether that means Obamacare, Medicaid, Medicare, or Ryan White -- is the social worker or case manager who works with your HIV provider. They can explain the options, help you decide what will work best for you, help you through the application, and help with claims once you are insured. (Health professionals and case managers should see the note at reference 4 for important information on Ryan White funding.) The Affordable Care Act offers an important new avenue to private health insurance for people with HIV. The ultimate value of the Act will not be determined for several years. But through March 2015 an estimated 16.4 million Americans got insurance through the legislation, while the proportion of uninsured people in the United States fell from 20% to 13%.5 Enrollment through the Act takes place in a limited period each year. The next enrollment period runs from November 1, 2015 to January 31, 2016.6 Certain people can still apply for coverage in 2015, as explained at the main Web site for the Affordable Care Act.


  1. Rozin I, Sayles H, Anderson MJ, et al. HIV-infected patient knowledge, attitudes, and beliefs regarding the Affordable Care Act. AIDS Res Hum Retroviruses. 2015;31:581-586.
  2. Centers for Disease Control and Prevention. HIV/AIDS. The Affordable Care Act helps people living with HIV/AIDS.
  3. O'Hara B, Caswell K. Health status, health insurance, and medical services utilization: 2010. Curr Pop Rep. 2012;2012:70-133.
  4. Many clinics that receive Ryan White funding have the opportunity to use that funding to purchase insurance for patients through the Affordable Care Act exchange. The Ryan White funds cover a patient's monthly payments as well as any deductibles and copays. Purchasing insurance this way can be cost-efficient for the HIV care program in the long run and great for patients because it enables them to see specialists and have access to real insurance rather than a safety-net system for HIV-related care only.
  5. Diamond J. New Obamacare numbers: 16.4 million covered. CNN. March 17, 2015.
  6. 2016 open enrollment.