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Jan. 13, 2017

TOPIC: Advocacy, Get Involved

NORD Addressing the Affordable Care Act

Posted by Christina Jensen

Many of the patients that we represent have benefited from the Affordable Care Act. While we know it has not worked for all, this law addressed some of the issues that were most challenging for patients with rare diseases, such as the ability of patients with pre-existing conditions to obtain insurance and lifetime caps on coverage.  We are preparing to mobilize to protect those provisions in the ACA that benefit the patients that we represent. NORD is coordinating with rare disease patient organization partners on strategy, and conducting meetings on the Hill to do that.

On this blog post, we will keep you informed on the initiatives, action alerts, position papers, etc. on the steps that NORD is taking to address the ACA.

January 10, 2017

Speaker of the House Paul Ryan has offered up high risk pools as a way to increase health coverage for individuals with pre-existing conditions.

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 currently working to assess the impact of high risk pools, and determine the effect they might have on the rare disease community, but we need your help. Have you or someone you know had an experience with high risk pools? If so, please share it with us. We want to know how high risk pools have impacted your lives so that we in turn can be best suited to advocate on your behalf.

Share your experience related to high risk pools with NORD using the form located here. Together, we can advocate on behalf of all rare disease patients.


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