December 2011

Speaking Out to Make a Change

Lisa Wood advocates on behalf of her son, Noah, who has cystic fibrosis.
Lisa Wood advocates on behalf of her son, Noah, who has cystic fibrosis. 

When Lisa Wood was denied coverage of the $15,000 mechanical vest her young son Noah needed to treat his cystic fibrosis in 2009, she refused to take “no” for an answer.

“I remember sitting there, sobbing, because I couldn’t believe his vest was denied,” Lisa says. “He’s got to have it.”

After filing an appeal with South Carolina’s Medicaid program, and getting denied a second time, she was able to arrange an affordable payment plan with the vest manufacturer to make sure her son’s medical needs were being met — but she realized her work had just begun.

“I knew I needed to fight for all the families out there who may not have any fight left in them,” she says.

Advocating for Change

As Lisa met with local and state government officials to discuss fixing the way South Carolina’s Medicaid program evaluated coverage for the vest and other essential CF treatments, she heard “no” several more times.

Undeterred, she teamed up with Jason Ranville from the Cystic Fibrosis Foundation’s advocacy program, which helped arrange a meeting with Gov. Nikki Haley, Lt. Gov. Ken Ard and Tony Keck, director of South Carolina’s Health and Human Services department. Dr. Patrick Flume and respiratory therapist Mary Lester, both from the Medical University of South Carolina CF care center, also joined the meeting, bringing their perspective and expert knowledge as CF medical professionals.

Over the following six months, Lisa and the Foundation’s advocacy group worked with Keck and state administrators to create an innovative arrangement that would change the way the state’s Medicaid program makes decisions affecting coverage for CF care. Now, cystic fibrosis experts at the Medical University of South Carolina work as “trusted advisors” to the South Carolina Medicaid program and provide detailed analyses of CF-related decisions made by the state’s Department of Health and Human Services.

This change has brought a critical level of protection to people with CF, helping to ensure they are granted fair access to the treatments needed to maintain their health.

Speaking Out Leads to Success in Other States

The success experienced in South Carolina has also been seen in other states. Through the Foundation’s advocacy program, CF advocates have contacted lawmakers in all 50 states to speak out in support of CF research and protect programs that help thousands of people with CF stay healthy.

In New York and Michigan, the Foundation secured funding for each state’s adult CF programs.

In Ohio, the Foundation rallied support for a budget amendment to protect CF Medicaid beneficiaries during the state’s program transition from traditional fee-for-service to managed care, providing more time for state agencies and decision-makers to adequately plan for the transition.

The Foundation has CF lobbyists on the ground in California, Florida, Michigan, New York, Ohio, Pennsylvania, Texas and Illinois, speaking out on proposed changes to Medicaid and other legislative issues that affect the CF community. 

In addition, volunteer State Advocacy Chairs affiliated with the Foundation lead teams of advocates in 37 states so they can mobilize quickly to address issues as they arise. For example, CF advocates throughout the nation sent more than 31,000 messages to the deficit reduction “supercommittee” as they finalized their recommendations in late November, to help ensure that people with CF in the Medicaid program will be able to go to their care centers and afford their treatments.

“The Foundation and its advocates are committed to helping people with CF and their families access the care they need,” says Mary Dwight, vice president of government affairs for the CF Foundation. “Our advocates are critical partners in our work to increase awareness, advance research and improve access to care for the CF community.”

Working Together to Make the CF Community’s Voice Heard

For Lisa Wood, being a CF advocate is the perfect outlet for her fiery spirit and compassion for others. She continues to advocate on behalf of those with CF and is currently encouraging vest manufacturers to provide help for families in need through the Foundation’s patient assistance programs.

“My biggest accomplishment is that I’ve been able to reach people and let them know that they’re not alone, that they don’t have to fight this fight alone,” she says. “It’s going to take all of us, working together, to reach our goals.”

Additional Resources

Contact the CF Foundation’s advocacy program at publicpolicy@cff.org for additional information or assistance. 

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