The Affordable Care Act: Make Your Voice Heard

The new administration and Congress are re-examining the United States health insurance system with the goal of repealing the Affordable Care Act, and replacing it with a new system. Protect Your Healthcare Coverage! (1) (1)

Protect Your Healthcare Coverage! (1) (1)

Before the Affordable Care Act was enacted in 2010, rare disease patients faced discriminatory insurance practices due to their pre-existing condition. Patients were denied coverage to vital therapies and specialists, and were often denied coverage altogether. Even when they could find coverage, insurers often put annual or lifetime benefit caps on their coverage, essentially removing all coverage once they hit a particular cost ceiling.

The Affordable Care Act banned these practices by forbidding insurers from discriminating against individuals with pre-existing conditions, outlawing annual and lifetime caps, and putting in place many other patient protections.

NORD is coordinating with rare disease patient organization partners on strategy, and conducting meetings on the Hill to ensure coverage protections for rare disease patients remain. Thank you for sharing your experience with us so that we can be best suited to advocate on your behalf.

Using the form below, share your experience related to any of the three topics listed below.

High Risk Pools
Prior to the Affordable Care Act, 35 states utilized high risk pools as a way to provide subsidized health insurance to those who had otherwise been denied affordable coverage in the non-employer based market due to a pre-existing condition. Additionally, the federal government ran its own version of a high risk pool while the ACA was being implemented, known as the Pre-existing Condition Insurance Program (PCIP).

We are working to assess the impact of high risk pools, and determine the effect they might have on the rare disease community. Have you or someone you know had an experience with high risk pools? Submit a story on this topic here.

Annual and Lifetime Limits
Annual and lifetime limits on coverage can deeply affect the rare disease community. Under the Affordable Care Act, health plans are prohibited from placing such limits on benefits. We at NORD are working to protect your coverage, and in doing so we would like to know more about the impact annual and lifetime limits had on your lives before the ACA was enacted. Have you or someone you know been affected by annual or lifetime limits? Submit a story on this topic here.

Loss in Health Insurance Coverage

Have you or a loved one experienced a loss in health insurance coverage? If so, why did this loss in coverage occur? Were you able to regain coverage? If so, after how long and with what insurer? Submit a story on this topic here.

Name of Patient*
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Patient's Residing State*
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Age of Patient
Email

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Phone Number
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Name of disease or disorder
Share you exprience related to the selected topic outlined above.*
Please send us a write-up that includes at least 500 words but no more than 2000. Be as detailed as you'd like about your experience with the topic that is listed above.
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Alone we are rare. Together we are strong.®