Patient Advocacy Web Cast Offers Up Valuable and Practical Advice

Getting coverage for healthcare and medications, as well as knowing your legal rights can be an uphill battle for many people with cystic fibrosis (CF). The more information patients and families have at hand the better equipped they will be. Experts from the CF community joined forces on March 28 to present a live Web cast about how patients can best navigate the world of health insurance and legal rights. The Web cast—hosted by the Cystic Fibrosis Foundation and broadcasted from Houston—drew 922 participants. 

Beth Sufian, J.D., of Sufian & Passamano, L.L.P., an adult with CF who helps to resolve legal issues and answer insurance questions for people with CF and other disabilities, offered detailed information about government assistance programs and advice on issues such as when to enroll in Medicare Part B rather than D. She helped to make sense out of the "alphabet soup" of federal and state programs and laws, like HIPAA and COBRA. 

So much of what a person with CF chooses for their direction in life impacts their ability to pay for healthcare and medications. Practical advice on choosing health insurance, career choices and employment issues were discussed, as well as issues regarding school and college. For instance, sometimes it is better to work part time and stay eligible for government benefits. Clearly, the more information that people with CF and their families have the better choices they can make to be sure to get the best financial coverage for healthcare.

People with CF should consider their care center staff as partners in getting coverage and not be embarrassed when finances are an issue, according to Suzanne Cumming, R.N., B.S.N., who also presented on the Web cast. As the clinic coordinator at the Baylor Adult CF Care Center in Houston, Cumming was able to offer practical advice on how CF care centers can help patients get coverage for care and medications, through the maze of paperwork. She also gave advice about the importance of “picking your battles with insurance companies.” 

Both Sufian and Cumming praised the Cystic Fibrosis Services Pharmacy staff for their knowledge of insurance and their training in patient advocacy practices, and encouraged patients to take advantage of the wide range of services provided by the pharmacy.

The advocacy Web cast was ninth in an ongoing series of Live Patient Education Day Web casts supported by an unrestricted educational grant from Genentech, Inc.

Udated 04/26/06