May 2010

Health Reform and CF

Advocacy Update - May 2010 - Connections - Cystic Fibrosis Foundation
CF Foundation National Advocacy Chairs
Amy and Peter Barry visited our nation's
capital this spring and encouraged their
elected officials to support the Improving
Access to Clinical Trials Act.


With health reform on the minds of many Americans, you may be wondering about changes that could impact people with cystic fibrosis. What legislation is on the horizon for CF? How will new regulations affect access to CF treatment?

The Cystic Fibrosis Foundation and its Advocates support legislation that advances cystic fibrosis research, improves access to care for people with CF, and increases awareness of the disease.

“Our goal in advocacy is to make sure elected officials understand the unique challenges people with CF face,” said Mary B. Dwight, vice president of government affairs for the CF Foundation. “With the help of volunteers, we are able to advance legislation that is making a difference for people with CF.”

New Health Coverage Regulations

New health care regulations, including some that are considered beneficial to people with cystic fibrosis, are scheduled to begin in September 2010. These include:

  • Pre-existing conditions: People with pre-existing conditions will find it easier to get health care coverage and have more protection against losing coverage. Insurance plans will be prohibited from excluding children from health coverage due to pre-existing conditions starting in September. This protection will also cover adults beginning in 2014.

  • Annual and lifetime spending caps: Insurers may no longer establish annual and lifetime coverage limits on their health care plans.

  • Coverage for dependents: Children will now be able to remain on their parents’ or guardians’ insurance plans until age 26.

The CF Foundation continues to follow health care reform closely, and will advocate on behalf of people with CF as reforms are implemented.

If you have questions about how new health care regulations will impact you or your family, contact the CF Legal Information Hotline or call (800) 622-0385.

Clinical Trials Legislation

One important piece of legislation the Foundation has advocated for is the Improving Access to Clinical Trials Act of 2009.

Right now, because of eligibility rules regarding compensation for clinical trial participation, many people with CF are forced to choose between taking part in important clinical trials and keeping their health care coverage. These rules keep significant numbers of people with rare diseases from participating in clinical studies.

To help promising drugs move swiftly from the research and testing phase to the people who need them, more people with cystic fibrosis are needed to participate in clinical trials. The Improving Access to Clinical Trials Act of 2009 will remove barriers that keep people who receive public assistance from participating in clinical trials.

The Foundation continues to urge Congress to pass the Improving Access to Clinical Trials. An extraordinary 121 members of Congress have already signed on to the House version of the bill, while 11 Senators are co-sponsors of the Senate version.

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