Under the new healthcare reform legislation (or Affordable Care Act), states have been given new responsibilities making the need to build COPD awareness with state legislators greater than ever. Many decisions about the form of care you access are made at the state level.
State Advocacy Co-Captains in Action
With these new issues facing state governments, the Foundation wants to enhance its advocacy efforts at the local level—using COPD’s best representatives—those whose lives have been touched directly by COPD. Karen Anzalone of New York is one such person.
“I think advocacy is the key to raising awareness for COPD,” Anzalone says. “My dad died of COPD in 2010 and I knew I had to do something, anything, to make a difference for COPDers everywhere.”
Anzalone served as her father’s primary caregiver for several years and wants to raise awareness about the disease, the resources that are available, and the challenges that the COPD community faces. She has volunteered to represent the community and the Foundation in outreach efforts to her state representatives in Long Island.
“Nothing matters more to me than this,” she says.“?is is the most important thing I’ve done in my life.”
Many individuals doing their part can collectively make a significant difference. This became obvious during the Foundation’s 2009/2010 campaign to have COPD questions added to the state Behavioral Risk Factor Surveillance System (BRFSS) questionnaire, a recent advocacy success. The BRFSS is the largest annual telephone survey conducted in each state to collect information on many health conditions to provide states with critical information about the health of their residents.
How it works
The Foundation asked members of the COPD community to call or write their state BRFSS coordinators and ask that COPD questions be added to the survey. Some were also asked to visit them in person. The synergistic momentum of individual after individual taking action created a tidal wave of success. All 50 states agreed to add a COPD question to their 2011 survey.
The BRFSS success illustrated that individuals with COPD taking action in their own state could bring about change. As in the BRFSS case, the Foundation frequently asks members of the COPD community to use the collection of advocacy tools in the COPD Action Center on the Foundation’s website. Individuals can access pre-written letters that explain a particular COPD-related legislative issue, customize these letters by adding their own unique COPD experience and the system will send them directly to their Congressional and state representatives. These Action Center campaigns continue to be important, but now the Foundation wants to take state advocacy to a more direct, person-to-person, grassroots level.
“It’s time to get offline and onto the streets,” Jamie Lamson, Associate Director of Public Policy for the Foundation, says. “We hope state Co-Captains will reach out, peer-to-peer, to others in their state, find out individual needs and recruit others to help advocate, while also introducing themselves to their state representatives and sharing their experiences.”
The Foundation is recruiting individuals in all 50 states to serve as State COPD Advocacy Co-Captains. Karen Deitemeyer of Florida has answered the Foundation’s challenge and agreed to Co-Captain advocacy efforts in her state. “There are so many individuals who don’t understand what COPD is or have ever heard of it,” Deitemeyer says. “And many of these individuals themselves may have COPD.”
Diagnosed with COPD 10 years ago, Deitemeyer has been active in the community for several years through the EFFORTS support group and Foundation-sponsored community workshops.
“Remember, your elected official is a regular person just like you,” she urges. “Don’t be intimidated. We have a right to ask for better laws and programs. If we don’t make ourselves known, then it will be a lot harder for us all.”
Deitemeyer, who recently had a successful meeting with her own Congressman, Rep. Bill Posey, urges that face-to-face meetings do have significant impact.
“It is very rewarding to pick up the phone and make an appointment [with your state representatives],” she says. “And the Foundation provides great materials to help you. You don’t have to do this alone.”
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