Defining Barriers to Treatment for Patients With CF

The Cystic Fibrosis Engagement Network, a project of the Alliance for Patient Access, released a new white paper, “Making Treatment Accessible for Cystic Fibrosis Patients.” The white paper details what’s standing in the way of patient access to new treatments approved to target some of the genetic mutations that cause Cystic Fibrosis – and how addressing bureaucratic barriers could help the 30,000 Americans living with this rare disease. For the patients with specific mutations, these treatments can significantly improve lung function and quality of life.

Continue reading Defining Barriers to Treatment for Patients With CF

OWN IT: Cystic Fibrosis Survival Rates in the United States vs. Canada

A study published in the Annals of Internal Medicine concluded that “the median age of survival [is] 10 years higher [for CF patients] in Canada than the United States.”

If you’re wrapped up in the world of cystic fibrosis news like I am then you’ve probably seen this study floating around the Internet for the Continue reading OWN IT: Cystic Fibrosis Survival Rates in the United States vs. Canada

‘Stunning’ gap: Canadians with cystic fibrosis outlive Americans by a decade

‘Stunning’ gap: Canadians with cystic fibrosis outlive Americans by a decade

Continue reading ‘Stunning’ gap: Canadians with cystic fibrosis outlive Americans by a decade

Medical Records Are Crucial — By Beth Sufian, JD

In this blog we provide information related to medical records and their importance to a person with CF.

Nothing in this blog post is meant to be legal advice about your specific situation and is only meant as information.  

Medical Records Are Crucial

Detailed and accurate medical records can help with a variety of issues. Medical records are important for those applying for Social Security benefits or undergoing an SSA Continuing Disability Review. Continue reading Medical Records Are Crucial — By Beth Sufian, JD

CALL TO ACTION – The Affordable Care Act

From the CFF…
We are sending this out today to let you know about an urgent need for action.  Wednesday, the Senate took a significant step toward repealing the Affordable Care Act. As critical health care reform decisions are made, it is essential that Continue reading CALL TO ACTION – The Affordable Care Act

BREAKING NEWS: AN ANALYSIS OF THE NEW SOCIAL SECURITY RULES FOR CYSTIC FIBROSIS.

By Beth Sufian, JD

Social Security has issued new rules regarding Social Security benefit medical eligibility criteria for people with CF.  The new rules will go into effect on October 7, 2016.  The following blog post is a summary of the changes and some important things people with CF should know about the changes. A more detailed Continue reading BREAKING NEWS: AN ANALYSIS OF THE NEW SOCIAL SECURITY RULES FOR CYSTIC FIBROSIS.

Social Security Administration (SSA) to Host Special Teleconference for Cystic Fibrosis Community about Proposed Changes to Disability Benefits

Friday, May 10, 2013 (1:00 – 2:30 p.m. ET)
The Social Security Administration (SSA) will host a special teleconference for the cystic fibrosis community on Friday, May 10 about proposed changes to disability benefits. https://www.federalregister.gov/articles/2013/05/07/2013-10702/medical-criteria-for-evaluating-cystic-fibrosis Continue reading Social Security Administration (SSA) to Host Special Teleconference for Cystic Fibrosis Community about Proposed Changes to Disability Benefits