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Barriers to HIV Care Under the Patient Protection and Affordable Care Act

July 1, 2014

For the most recent state decisions on health insurance Marketplaces and the Medicaid expansion, visit The Henry J. Kaiser Family Foundation.

For the most recent state decisions on health insurance Marketplaces and the Medicaid expansion, visit The Henry J. Kaiser Family Foundation.

People living with HIV in the U.S. continue to face barriers to care six months after the Patient Protection and Affordable Care Act (PPACA) came into effect, according to a national meeting of health sector advocates.

Organized by, the webinar speakers celebrated recent accomplishments under the PPACA while highlighting remaining challenges.

Millions of Americans now have access to health insurance through new state-based Marketplaces and Medicaid.

Approximately 18% of adults lacked insurance coverage in December 2013 -- that number dropped to 15% in March 2014.

However, the presenters stressed that challenges must be addressed if increased access to care and treatment is to be achieved for people living with HIV. The expansion of the Medicaid program was identified as a top priority.

"We haven't expanded Medicaid everywhere and we need to do that," said Malinda Ellwood, a senior clinical fellow with Harvard Law School's Health Law and Policy Clinic of the Center for Health Law and Policy Innovation.

"We have about 26,000 people living with HIV at this point who are accessing Medicaid, but we're missing about 18,000 more who could be accessing Medicaid if all states adopted the expansion."

National Alliance of State & Territorial AIDS Directors (NASTAD) Health Care Access Associate Director Amy Killelea explained that expansion of the Medicaid program had been particularly slow in the U.S. South.

"[The South] is a region characterized by states who have decided not yet to expand Medicaid and it's exacerbating ... already existing health disparity and health inequality and I think that that's really concerning," Killelea said.

Health sector advocates also highlighted barriers in state-based insurance Marketplaces.

"One of the promises of the PPACA was that it was going to try to address complexities of the insurance enrollment process and help people compare, in a meaningful way, different kinds of health coverage options so that they could make informed decisions, but unfortunately we didn't always see that come into play," Ellwood said. "We have seen and heard about several trends that undermine these transparency objectives."

These included: inadequate information on insurance plan websites, lack of standardization of plan formulary information, inconsistencies between marketplace and plan websites, and changes to plan design and cost-sharing structures subsequent to enrollment.


"We want all marketplaces to provide complete, accurate and accessible formulary information in a standard format," Ellwood said.

"We want to make sure that any plans with co-insurance requirements clearly list, not only the drugs that are covered, but also the price of the drug and ... if plans do make changes during the benefit year that significantly affect the ability of a consumer to continue to access their medications or care, that those changes qualify [the consumer] for a special enrollment period so that they can chose to change plans."

The health care advocates said that insurance plans continued to provide inadequate coverage of HIV medications, including certain protease inhibitors and single-tablet regimens.

They also spoke of evidence of increased "utilization management" processes, such as prior authorization and step therapy, which reduced access to medications.

"Limiting access to regimens that are designated preferred by the [Department of Health and Human Services] is a form of discrimination," said John Peller, interim president and CEO of AIDS Foundation of Chicago.

Accordingly, health sector advocates called for the Essential Health Benefits rule to be amended to require coverage of specialty drugs that are widely accepted in treatment guidelines or best practices.

This would require coverage of all HIV antiretroviral drugs, including fixed-dose combinations and single-tablet regimens, in accordance with federal HIV treatment guidelines.

Additionally, advocates called for Marketplace insurance plans to stop placing HIV medications on formulary tiers with very high levels of cost sharing.

"We want to amend the Essential Health Benefits rule to not only require coverage pursuant to HIV standards of care, but also to prohibit excessive co-insurance for these specialty drugs because there is really no point in saying you cover a drug if the cost sharing is so high as to be completely prohibitive," Ellwood said.

An archive of recordings, slides and resources from this and other webinars is available at

Having trouble accessing HIV treatment and care?

The Speak Up project monitors, catalogs and analyzes problems experienced by people living with HIV within the new health care system.

Project staff help individuals and service providers by answering questions, providing information on appeals processes and suggesting next steps.

Staff also bring priority issues to the attention of state and federal regulators and policymakers and advocate for change as the PPACA is reviewed and refined.

Problems may be reported at:

The Speak Up project is an initiative of the AIDS Foundation of Chicago in partnership with the Center for Health Law and Policy Innovation at Harvard Law School.

Katherine Moriarty is a consultant and freelance writer, based in Vancouver. She has 10 years of experience in the intersecting fields of public health and community development, with a focus on bloodborne virus policy and programming.

Copyright © 2014 Remedy Health Media, LLC. All rights reserved.

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This article was provided by TheBody.
See Also
U.S. Health Care Reform

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