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Are You Having Trouble Seeing Your HIV Provider? The Speak Up! Project Wants to Know About It

August 12, 2014

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The Affordable Care Act (ACA, or Obamacare) has brought health insurance to millions around the country -- but that doesn't mean it's always a smooth path to care and treatment for participants, including those who are living with HIV. Now, HIV service providers, policy advocates and legal experts, working together as the Speak Up! project, are reaching out to document and take action on problems that are putting up roadblocks for people with HIV.

Speak Up!'s major goal is to improve access to health care. The project is collecting, cataloging and analyzing problems; reporting them (without any identifying information) to local, state and federal officials who are charged with health care reform oversight; and letting the community know about its work to address health care reform problems and concerns.

According to John Peller, interim CEO of AIDS Foundation of Chicago, via email, "People from across America are telling Speak Up! about the problems and successes they are having getting HIV care. We'll occasionally ask new questions based on problems we're hearing about to find out more about a particular issue and see how widespread the problem is. After each question, we'll send out an update to let you know how many other reports we received about the problem and what we're doing to try to help address it."


Peller explains that, "We are hearing concerns from people that when they were enrolled in a new health plan, their HIV or other provider was not included (or no longer included) in their new plan networks. You may have also experienced a problem with having to choose a new primary care provider other than your HIV provider."

"Has this happened to you or your client?" he asks, "Have you been able to continue to see your HIV and/or other providers? What did you have to do? Did it cost you more?"

People living with HIV or providers with stories to share are encouraged to "speak up" on the project's reporting form.

Speak Up! is a partnership led by AIDS Foundation of Chicago and the Center for Health Law and Policy Innovation at Harvard Law School. Key national partners are the AIDS Institute, AIDS United, HIV Medicine Association, National Alliance of State and Territorial AIDS Directors and Project Inform. Initial funding was provided by the MAC AIDS Fund.

Julie "JD" Davids is the managing editor for and

Follow JD on Twitter: @JDAtTheBody.

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

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