legislation
AdvocacyFinancialLiving With CF

Make Friends with your Legislators!

Especially for Cystic Fibrosis, how the government acts on the Accountable Care Act  (ObamaCare) does make a difference! Since Healthcare was such a big issue in the last election: Keep in touch with your legislators…YOU HIRED THEM!  They need to hear from YOU! Make them your FRIENDS! Congress: Find your …

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patient assistance controversy
AdvocacyFinancialLiving With CFTreatments

Understanding Pharma Controversies in the News

Many people have heard of the company, Turing Pharmaceuticals, which last year raised the price of a drug by over 5,000%, but most people don’t understand how and why that was possible. Looking at the issues behind the Turing Pharmaceutical controversy of this past year is worthwhile even though the …

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governmentteam
AdvocacyFinancialLiving With CF

Put your legislators on your team!

by: Peter S. Barnett PT, DPT, OCS In the USA… Do you know who your lawmakers are? To anyone who has an illness, and especially families dealing with Cystic Fibrosis; it matters that you know your lawmakers. Everything (Medicare/Medicaid/SSDI, Commercial Insurance, Premium Rates etc) about healthcare is connected to politicians. …

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welobby
AdvocacyClinical Trials

We Lobby

A Brief History of Our Lobbying Efforts in 2015   In April, 2015, we sent this letter to the FDA Committee: Sent: Thursday, April 02, 2015 12:17 PM To: PADAC Subject: on line patient community at cysticfibrosis.com Dear Dr. Hong, We run an on line patient community at cysticfibrosis.com. Several …

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