BEF, Author at The Boomer Esiason Foundation

March 19, 2019

The Cystic Fibrosis Foundation, on behalf of the CF community, has taken its concerns about a proposed rule that raises difficulty for people with CF to receive disability benefits to the Social Security Administration (SSA). Recently, the SSA released a proposal that would change the way...

Legislation to Expedite Approval of Rare-Disease Drugs Moving Through Congress

by BEF

CF News, Policy

March 19, 2019

Source: Cystic Fibrosis Foundation The U.S. House of Representatives has passed the Expanding and Promoting Expertise in the Review of Rare Treatments Act, better known as the “EXPERRT” Act. Introduced by Reps. Edward Markey (D-MA), Tom Marino (R-PA) and Cliff Stearns (R-FL), the legislation enables expanded consultation...

CF Foundation Kicks Off ‘Make Every Breath Count’ Campaign

by BEF

CF Community, CF News, Policy

March 19, 2019

Volunteers from all over the country will meet with their elected officials in their hometowns this summer as part of Make Every Breath Count, the Cystic Fibrosis Foundation’s annual national advocacy campaign. By participating in Make Every Breath Count, volunteers hope to build support in Congress...

HHS Reduces Insurance Premiums for Pre-Existing Condition Plan

by BEF

CF Community, CF News, Policy

March 19, 2019

The U.S. Department of Health and Human Services (HHS) on May 31 announced new steps to reduce premiums and make it easier for Americans to enroll in the Pre-Existing Condition Insurance Plan. Premiums for the Federally-administered Pre-Existing Condition Insurance Plan (PCIP) will drop as much as...

Clinical Trials Legislation Takes Effect

by BEF

CF News, Policy

March 19, 2019

A new law that allows patients with rare diseases to participate in clinical trials without losing eligibility for public healthcare benefits went into effect yesterday. The bill, known as the “Improving Access to Clinical Trials Act” (IACT), was signed into law in October 2010. Because of...

FDA Panel Not Sold on Personal Genetic Testing

by BEF

CF News, Policy

March 19, 2019

A Food and Drug Administration advisory panel said March 8 that genetic tests directly marketed to consumers should be allowed only under a doctor's supervision. Personal testing, which is mainly available online from firms operating outside traditional medical institutions, can produce ambiguous or misleading results without...

‘Improving Access to Clinical Trials Act’ Passes U.S. House; Heads to President for Signatur

by BEF

CF News, Policy

March 19, 2019

The U.S. House of Representatives passed the "Improving Access to Clinical Trials Act" (I-ACT), in a victory for the Cystic Fibrosis Foundation, its advocates and 120 other health advocacy organizations. The bill, which passed the Senate Aug. 5, now goes to President Obama's desk for his...

‘Improving Access to Clinical Trials Act’ Passes U.S. Senate in Victory for CF Advocates

by BEF

CF News, Policy

March 19, 2019

The U.S. Senate last night passed the "Improving Access to Clinical Trials Act" (I-ACT), a bipartisan piece of legislation championed by the Cystic Fibrosis Foundation, its advocates and 120 other health advocacy organizations. The legislation enables patients with rare diseases to participate in clinical trials without...

Cystic Fibrosis Podcast 212: Never Say Never with Gary Klausner

by BEF

Adulthood and CF, CF Podcasts, Lung Transplants

March 12, 2019

In the latest CF podcast, 53-year-old Gary Klausner shares his unique story. He is 20 years post double lung transplant, married with two children, and living his life to the fullest. He discusses how his positive attitude has gotten him through the difficult times, including...

Cystic Fibrosis Podcast 211: Life After Chronic Rejection Post Transplant

by BEF

CF Podcasts, Lifestyle Adjustments, Lung Transplants

February 19, 2019

In Jerry Cahill’s latest podcast, Katy Starck-Monte and her husband Joey sit down to share their story. Diagnosed at 13 months old, Katy was born the youngest of five sisters. With the support and help of her family, she lived a relatively normal life –...

Author: BEF

The CF Foundation Expresses Concern About Proposed Disability Benefit Changes

Legislation to Expedite Approval of Rare-Disease Drugs Moving Through Congress

CF Foundation Kicks Off ‘Make Every Breath Count’ Campaign

HHS Reduces Insurance Premiums for Pre-Existing Condition Plan

Clinical Trials Legislation Takes Effect

FDA Panel Not Sold on Personal Genetic Testing

‘Improving Access to Clinical Trials Act’ Passes U.S. House; Heads to President for Signatur

‘Improving Access to Clinical Trials Act’ Passes U.S. Senate in Victory for CF Advocates

Cystic Fibrosis Podcast 212: Never Say Never with Gary Klausner

Cystic Fibrosis Podcast 211: Life After Chronic Rejection Post Transplant

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