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Advocacy Update

Oklahoma MS Activists Play Crucial, Year-Round Roles in Legislative Process


Oklahoma MS Activists Move Forward with Purpose

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 living with 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.

Taking Action at the 2012 Oklahoma Public Policy Conference

While the Oklahoma legislature was getting under way in January, Oklahoma MS Activists were also preparing. The 2012 Oklahoma Public Policy Conference (PPC) brought together 22 dedicated people from across the state who have been affected by MS and 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 also discussed how best to do that.   Activists also participated in a legislative briefing about priority MS legislation to guarantee continuity of prescription drug coverage.

Later that day at the state capitol conference attendees put their skills to work in meetings with state officials. Some had pre-scheduled appointments with their State Senator and State Representative and others took advantage of the process for requesting an impromptu 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.

Of particular interest was a bill authored by Representative Gus Blackwell that pertained to continuity of prescription drug costs. This bill would have required insurance companies to maintain the cost of prescription drugs throughout the life of the contract, and required them to provide advance notice of any cost changes prior to the end of the contract year. MS Activists are extremely grateful for Rep. Blackwell’s willingness to file this legislation and for his leadership throughout the session. He listened to MS Activists’ stories of learning about unexpected changes in prescription drug benefits at the counter of their local pharmacy; often a significant increase in hundreds of dollars for co-pays. It was their stories that made it clear to Rep. Blackwell that this change in law was needed for all Oklahomans affected by chronic illness.

OKE Allison Warning with Sen. Adelson

During the conference, MS Activist Allison Warning met with Rep. Tom Adelson
to discuss legislation pertaining to prescription drug costs.  

Rep. Blackwell and activist efforts paid off when the Oklahoma House voted 91-0 to pass HB 2606. In spite of this victory, though, the bill faced stiff opposition in the Senate, where discussion about how to proceed bogged down. It eventually became apparent that additional progress this session would not be possible. To preserve the integrity of the bill so that it will best serve the interests of those with MS it was ultimately decided to postpone further consideration until the 2013 legislative session.  

Building on the momentum of the PPC, MS activists and GRC members organized and participated in a second event held later in the legislative session, targeting those representatives who serve on key committees, or who may be especially interested in offering their support. Among others, activists met with members of the House & Senate Insurance committees and the Public Health Committee; Rep. T.W. Shannon, incoming Speaker of the House;  Rep. Scott Inman, the Democratic Minority Leader; and Senator Bill Brown, Chairman of the Senate Insurance Committee.  

OKE Meeting at Rep. McDaniel's

Rep. Jeannie McDaniel (right) met with NMSS Regional Director of Activism Mireya Zapata (left, seated)
and MS Activists James Lathrop and Patti Barker to discuss legislation on continuity of prescription drug pricing.

Because MS Activists have laid this important groundwork and will continue to participate in dialogue with their legislators, we are in an excellent position to take up this issue again. The work done by MS activists this year will continue to be important as we plan for 2013 and look to re-file this important legislation.

Building a Coalition

Often some of an activist’s most important work is accomplished outside of the capitol and after the legislative session.

This past spring NMSS staff and Oklahoma Government Relations Committee (GRC) members, a group of MS activists who make advocacy work a priority, began efforts to assemble a coalition of support around the continuity of prescription drug bill. They reached out to connect with organizations who are involved in health and human services from around the state, and who share common interests with the National MS Society.

GRC members also participated in meetings with Commissioner Terry Cline at the Oklahoma State Department of Health, who also serves as Oklahoma’s Cabinet Secretary of Health and Human Services for Governor Fallin. Mark Newman, the Director for State & Federal Policy at the Department was also in attendance.

Dr. Rick Farmer, the Assistant Commissioner of Government Affairs, Public Policy & Communications, at the Oklahoma Insurance Department, also met with GRC members and NMSS staff, who shared with him information on the continuity of prescription drug coverage legislation bill. Although the Department can’t endorse legislation, discussions about the issues and their impact on people with MS are important to educate and raise awareness.

Relationships such as these can be very valuable, and joining forces together for a common cause can benefit all of those involved. Oklahoma MS Activist efforts to create the Oklahoma Continuity of Prescription Drug Coverage Coalition will almost certainly benefit future advocacy work.

Oklahoma Activists go to Washington DC

In March, Oklahoma MS activists travelled to Washington DC to participate in the National MS Society Federal Public Policy Conference, bringing activists from across the country together to learn, discuss, exchange ideas and have fun while preparing for meetings on Capitol Hill with their congressional delegates and staff.   Emily and Tom Teasdale, Patti Barker and her daughter Channing Barker, and Ray Mack attended to represent the state of Oklahoma.

OKE Channing Barker at DC PPC 2012

Channing Barker, diagnosed with MS in 2006, spoke with wit and
passion about the experience of being an MS Activist
.

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; funding for ongoing research initiatives through the National Institutes of Health and the Congressionally Directed Medical Research Programs (CDMRP)—high risk/high reward research focused on veterans that have been diagnosed with MS.  

Activists also spoke about the MS Caucus, a group of dedicated members of the U.S. Congress 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.

OK Activists at US Capitol

Representing the state of Oklahoma at the National Public Policy Conference in Washington DC
were (from left to right) MS Activists Dr.Tom Teasdale, Emily Teasdale, Patti Barker, Ray Mack,
Mary Benes and Channing Barker.

The Oklahoma delegation of conference attendees were especially proud to hear Channing Baker, who hails from Tulsa and was diagnosed with MS in 2006, speak to an audience of attendees from across the US about her experiences in MS Activism. She encouraged them to realize the tremendous value of their participation as activists. She spoke with wit, passion and enthusiasm and her comments were a great inspiration to the crowd, many of them first time advocacy participants, as they prepared for their visits to Capitol Hill.

 

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