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PSC-Related Blog

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Dear PSC Community,

Access to affordable, high quality health care is essential for patients and families experiencing PSC. Like everyone, PSC Partners has been closely watching congressional health care reform efforts and how they may impact people diagnosed with PSC.

We understand that this is a complex issue. Regardless of the many differing opinions on the topic, we know that our community members struggle with the reality of living with a rare disease, and as a result, you have a unique perspective. We know that 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.

The impact of the American Health Care Act, the House plan to replace the Affordable Care Act, is not clear. It is reassuring that exclusions for pre-existing conditions and lifetime insurance caps would still not be allowed, and that children will continue to be able to stay on their parents’ insurance until age 26. For older and low-income people with PSC, insurance could become more expensive, and some may lose coverage if new Medicaid caps are put in place. It is also concerning to see moves toward reinstating state high-risk pools for people with chronic illness.

These issues are not settled, and no changes have been adopted yet. At present, it is critical that PSC patients and their caregivers join the conversation and ensure that their voices be heard. Please take the initiative to educate yourself about the proposed changes and form your own opinion. We encourage you to contact your legislators to share your unique perspective and experiences, and how they shape your opinions about the American Health Care Act. To find your elected representatives, please visit and and use the “Find Your Senator/Representative” tool in the upper right corner.

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.  As always, we remain together in the fight–whatever it takes!

Ricky Safer, Chief Executive Officer

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