MS Activists Play Crucial, Year-Round Roles in Legislative Process
You may have heard it said that “all politics is local”. This means that the concerns of citizens and the issues that affect their everyday lives can have a strong influence on the legislative process.
An MS Activist is someone who is willing to talk with their representatives in government, tell their personal story of how they are affected by MS, and discuss the legislative issues that are priorities to them. Those who are willing to take on this role can play a critical part in supporting legislation that creates positive change for those living with chronic illnesses. Their input can give lawmakers valuable perspective on how public policy will impact their ability to cope with MS and live full and independent lives.
MS Activists in the Louisiana State Senate chamber during the 2012 Public Policy Conference. From left to right: Sal Giardina (seated), Virgie Hebert and her family Catherine & Steven Horsby (in back), Marissa Hornsby (in front), Senator Norbert Chabert, and National MS Society Louisiana VP of Development, Becky Pennington.
MS Activists met with their state legislators outside of the Senate chamber to discuss MS priority issues.
While the Louisiana legislature was getting under way in March, MS Activists were also preparing. The 2012 Louisiana Public Policy Conference (PPC) brought together 39 dedicated people affected by MS from across the state who were committed to being a voice for MS through advocacy efforts.
Joe Gagen, a nationally recognized advocacy expert, led an advocacy workshop and training session designed to give attendees information on how to interact and cultivate working partnerships with those who represent them in government. An especially valuable component of being an MS Activist is sharing personal stories of living with MS, and the workshop included information on how best to do that. Activists also participated in a legislative briefing about the proposed bill on continuity of prescription drug care.
Later that day at the state capital conference attendees put their skills to work in meetings with state officials. Some had pre-scheduled appointments with their legislators and others took advantage of the process for requesting a meeting outside of the Senate and House chambers. Everyone who attended had the opportunity to introduce themselves to their legislators and their staff, tell their story, and ask for support on issues that are important to people who are living with MS.
MS Activists thanked their legislators for support on the Continuity of Prescription Drug bill, passed during the previous 2011 legislative session. This bill requires insurance companies to maintain the cost of prescription drugs throughout the life of the contract, and to provide advance notice of any cost changes prior to the end of the contract year.
Following the implementation of the bill, Louisiana MS Activists remained engaged in conversations with their representatives to offer continued support of its implementation, offering both verbal and written comments about this important legislation.
The work done by MS Activists has laid important groundwork for the coming year. Thanks to their efforts, we are in an excellent position to pursue other MS priority bills in 2013.
Representing the state of Louisiana at the 2012 Public Policy Conference in Washington DC
In March, Louisiana MS activists travelled to Washington DC to participate in the National MS Society Federal Public Policy Conference. Representing the state of Louisiana were Erin Hulin, Lisa and Walter Chaisson, his brother Paul Chaisson , and Jody Garcia.
The conference brought activists from across the country together to learn, discuss, exchange ideas and connect with other MS Activists while preparing for meetings on Capitol Hill with their congressional delegates and staff.
During their meetings they discussed a variety of issues that included renewed funding for the Lifespan Respite Care Program—a program to help friends and family caring for a loved one living with a chronic illness; and funding for ongoing research initiatives through the National Institutes of Health and the Congressionally Directed Medical Research Programs - high risk/high reward research focused on veterans that have been diagnosed with MS.
Activists also shared information about the Congressional MS Caucus, a group of dedicated members who seek creative solutions to the challenges facing people with MS and their caregivers. Those legislators who had not yet joined the MS Caucus were invited to consider doing so.
The success of Louisiana MS Activist efforts to build relationships with their legislators has created a strong foundation to work from as the 2013 state and federal legislative sessions get under way.
Back home in Louisiana, MS Activists worked in partnership with the Louisiana Advocacy Center to advocate for state funding to reduce the state’s wait list for Community Choice Waivers. This funding, if approved, would help Louisianans living with MS have access to the health services they need to stay in their own homes and avoid entry into a nursing facility.
The waiver slots allow access to a wide range of services, including home modifications, personal assistance services, adult day health care services, home delivered meals, support services for care partners, therapy services, and nursing services.
As the state budget moved through the legislative approval process, MS Activists responded to action alerts by emailing and calling their representatives to encourage them to approve the funding. Our coalition was successful in securing the funding, providing for 500 new slots in the waiver program.
Former State Senator Joel Chaisson and former State Representative Juan LaFonta were presented with the 2011 National MS Society Legislative Champion award at a reception hosted by the National MS Society Government Relations Committee (GRC) and Ochsner Health System in March.
With activist participation and input, lawmakers will have access to critical information about MS, connections that can be instrumental in advocating for positive change and passing policies to better meet the needs of people affected by MS.