Resources on health care reform

By United_States_Capitol_-_west_front.jpg: Architect of the Capitol derivative work: O.J. (United_States_Capitol_-_west_front.jpg) [Public domain], via Wikimedia Commons

Health care reform generally refers to the ongoing changes to laws that govern health care—including how health insurance is purchased and sold. After the passage of the Affordable Care Act (ACA) in 2011, and with the majority party in Congress working to change it, health care reform may soon impact your care.

For someone who relies on competent, steady, professional care and treatment to manage a chronic condition, the uncertainty of what could change can be worrying. A lot is at stake.

If you want to or have tried understanding current legislative conversations on health care reform, you may find it difficult to know where to look. While it’s a very complicated subject, below are some resources we hope can give you a place to start following the conversation.


For the basics

The source of the insurance itself tries to keep its consumers updated on actions they might need to take. is run by federal agencies and should let you know or answer any questions you have about your insurance. They keep a blog you can bookmark for updates.

Alternatively, if you have Medicare coverage, you’ll want to seek updates on the U.S. Medicare site. You can visit their blog here.


For understanding health law

The Department of Health and Human Services has a list of HHS-related policy under review, including regulations open for comment. This is a great resource if you want to read entire legislation currently on the table or include your voice in the legislative process.


For understanding how insurance works

Learning about insurance helps you understand what changes may mean. Brief videos can break this down quickly and clearly. Either explore video search engines yourself or try one of these health care channels:


For the advocacy angle

Patient advocates

Organizations that advocate for patients, such as the Patient Advocate Foundation or the National Patient Advocate Foundation, are likely to have your interest in mind as they inform on health care. Watch their news sections or contact them directly.

“Speaker at Podium” by is licensed under CC BY 2.0

Patient associations

Similarly, disease-specific patient associations can help educate you or suggest advocacy angles related to health care. Try CVC’s helpful resources page to find one related to your condition and search the site for a “policy” or “advocacy” or “health care law” section.

Here’s a section on action and policy from the National Organization for Rare Disorders for example.


Other tips:

Finally, if you’re experiencing anxiety around the uncertainty involved in this or any part of your illness, this article can help you understand when to seek help.

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