Speak UP!

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About the Project

The HIVHealthReform.org “Speak Up” project will help people living with HIV get the care they need through health care reform. This national project will monitor, catalog, and analyze the problems experienced by people with HIV in the new health care system.

We will identify issues that need to be addressed, bring them to the attention of state and federal regulators and policymakers, advocate for change, and report back to the community. Beyond helping individuals, information collected through this project will ultimately serve the entire HIV community, as it will help educate state and federal officials as they review and refine key aspects of the Affordable Care Act in coming years.

Click here to report a problem.

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What can I get help with?

One part of our work is to collect, catalog and analyze problems so we can improve access to health care. The other part of our project is to help individuals and service providers by answering questions, providing information on the appeals process, generally troubleshooting, and suggesting next steps. In many cases, we may suggest that you get help from someone at the local level.

Who can report problems?

We encourage anyone living with HIV to report problems they are having accessing care. We also urge anyone who helps people with HIV to report problems on behalf of their clients. That includes planning council members, peers, health care clinic staff or health care provides, case managers, social service providers, navigators, health department officials, and anyone else who has information to share.

What kinds of problems should I report to you?

We want to hear about problems you are having accessing health care, such as getting prescription drugs, primary care, or access to specialists.Some examples are listed below:

  • Can you afford the care you need?
  • Is your state’s AIDS Drug Assistance Program helping?
  • We also want to hear about success stories, so send them too!

What are the limits of the help we can provide?

While some of us working on the project are lawyers, we are not licensed in every state. Any resources we can provide do not constitute legal advice.

What if I have more questions?

We are here to help you! Please send us an email if you have additional questions and we will do our best to get back to you in a timely manner.

What information should I tell you?

Please tell us your name, email address, phone number, and as much information as is needed to provide a full description of the problem. We need to know what state you live in, the insurance company or Medicaid health plan you are a member of, provider name, medication names, and so on. The more detail the better. Don’t forget your contact info so we can follow up if we have questions.

What should I NOT tell you?

We are not using secure servers, so don’t send us any protected health or other personally identifiable information such as social security number, health status (including HIV status), date of birth, and so on. You also don’t have to provide information such as a name, email or phone number.  But, if it would be okay for us to follow up with you to learn more, please include an email address or other means of getting in touch with you.

Partners working on this project
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.

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