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PSC-Related Blog

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Dear PSC Community,

PSC Partners has been closely watching congressional health care reform efforts and how they may impact people diagnosed with PSC. As part of our mission, PSC Partners provides education and support to PSC patients, families and caregivers and we think it is important for our community to be aware of the various ways that the latest version of the American Health Care Act (AHCA) might impact us.

Yesterday, NORD (the National Organization for Rare Disorders) released a statement outlining its opposition to the latest version of the American Health Care Act (AHCA), which Congress could vote on as early as this week. According to NORD, the proposed legislation will have a negative impact on the rare disease community of which PSC is a part.

The new proposal, known as the MacArthur amendment, could substantially reverse protections for individuals with pre-existing conditions and could give states the ability to permit insurers to charge higher premiums to sicker individuals. If this proposal passes, PSC patients and their families may face unaffordable premiums. Stable, affordable health insurance is critically important to people with chronic, rare diseases that require regular observation and, in many cases, hospitalizations, outpatient procedures, and even transplants.

We support NORD’s position on the revised AHCA/ MacArthur Amendment and encourage you to take a close look at their statement and their principles for health coverage reform. Furthermore, it is critical that PSC patients and their caregivers join the conversation and insist that their voices be heard. We encourage you to contact your legislators today to share your unique perspective and experiences, and how they shape your opinions. This will link you directly to the resource to locate and contact your specific representatives. Help us make the voices of the PSC community heard now!

Click Here to contact your Legislators

PSC Partners knows what it means to live with PSC, and we will continue to do everything we can to make sure others know it, too. We hope to be able to support legislation that improves the lives of PSCers, however, the MacArthur Amendment raises important concerns for our community and requires our voice. As always, we remain together in the fight-whatever it takes!

Ricky Safer
Chief Executive Officer

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