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 CoverageHave 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.
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