New Mexico MS Activists Play Crucial, Year-Round Roles in Legislative Process
- Moving Forward With Purpose
- Proposed Legislation to Address Unexpected Changes in Prescription Drug Costs
- New Mexico 2012 Public Policy Conference: Success!
- Government Relations Committee: Leaders in the MS Movement
- Beyond the PPC: A Bright Future for the MS Advocacy Movement in New Mexico
Moving Forward With Purpose
It is said that “all politics is local”. This means that the concerns of constituents and the issues that affect their everyday lives at a local level can have a strong influence on the legislative process.
Those who are willing to take on the role of New Mexico MS Activist and tell their story can play a critical role when it comes to supporting legislation that creates positive change for those living with a chronic illness. Their input can give lawmakers valuable perspective on how legislation will impact their ability to cope with MS and live full and independent lives.
This year New Mexico MS Activists are moving forward with purpose to engage in year round advocacy efforts to support public policy that addresses the needs and challenges of those affected by MS.
Proposed Legislation to Address Unexpected Changes in Prescription Drug Costs
For those who have MS, managing the cost of prescription drugs can be very challenging, especially in these difficult economic times. In fact, cost is one of the two most frequent reasons cited for stopping disease-modifying therapy. New Mexicans, including those with comprehensive insurance coverage, are subject to health insurance with rules that allow plans to move a brand name medication from a lower tier to a higher tier at any time during the contract year without notice. The 8 FDA-approved MS disease modifying drugs area almost always in the “specialty tier”, and cost increases at this level can be in the hundreds or even thousands of dollars per month. Under these current terms it can happen that an individual will first learn about a cost increase when they attempt to fill a prescription, only to be told that the price has gone up, often dramatically. Such unexpected changes in cost can be difficult for families to absorb, often leaving no option but to cut back on a drug’s use or stop taking it altogether.
Senator Timothy Jennings agreed to file Senate Bill 108, which addressed the issues of unexpected changes. This bill would prohibit insurance companies from making changes to prescription drug coverage during the terms of a contract and would require 60-day notice of any cost changes to the enrollee prior to reenrollment.
In January the New Mexico Legislature convened for a short 30 day fiscal session, and the only items officially included in the agenda were those related to the budget. The Governor has the option of adding other items for consideration, which she does by issuing an executive message that includes her requests.
With this in mind, New Mexico Government Relations Committee (GRC) leaders met with Governor Martinez several times in the months leading up to the session to formally request that she issue a special message to include SB 108, the continuity of prescription drug coverage bill, to the legislative agenda. Although the request was not granted, submitting it allowed the GRC to continue to work on its relationship with the Governor and key members of her staff. They have laid valuable groundwork to continue to build on in future efforts.
New Mexico 2012 Public Policy Conference: Success!
GRC member Patricia Miller met with Senator Phil A. Griego at the state capitol to discuss MS priority legislation.
While the legislature was getting under way in January, the 2013 New Mexico Public Policy Conference (PPC) brought together people with MS from across New Mexico who are committed to being engaged as MS Activists.
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 the proposed bill on continuity of prescription drug care
On day 2 of the PPC MS Activists, armed with information and newly polished advocacy skills, travelled to the state capital in Santa Fe prepared to initiate discussion about the continuity of prescription drug care bill with their state officials. Like the GRC, they also hoped to establish connections that would serve as a basis for future discussions in 2013, when the bill will be taken up again.
New Mexico MS advocacy efforts at the Capital were enhanced by the efforts of the New Mexico Government Relations Committee (GRC), a group of MS activists who take on leadership roles in MS advocacy. They were responsible for some of the unique features that contributed to the success of the Public Policy Conference.
Through their brainstorming they created the idea for a “Wake Up to MS” gift bag to be delivered to the legislators in advance of the activist visits. They wanted to include locally supplied coffee, mugs, and a mock newspaper that would help increase awareness about MS. When it became apparent that the budget would not accommodate the purchase of coffee mugs and coffee, New Mexico GRC leaders very quickly found sponsors who agreed to cover the cost. They worked with National MS Society advocacy staff to create the newspaper, which came to be called “The MS Advocate”. It was designed to introduce MS Activists to the legislators and provide information about their capital visits and goals for the day. The MS Advocate proved to be an idea that worked so well that it was recreated for use in other state across the South Central Region.
MS Activists Dereck Scott (right) and wife Aisle McGrath
discussed MS priority legislation with Rep. Nate Gentry (left).
On the morning of the MS Activist visits to the state capital New Mexico, The MS Advocate and the coffee were waiting for state legislators. A sea of NMSS –logoed bags greeted them in the House and Senate chambers. Later that day, when MS activists came to the chambers to ask to meet with their Senators and Representatives, legislators were already anticipating interacting with them.
It is not customary for New Mexico legislators to pre-schedule appointments while they are in session, so activists learned the process to request a meeting with them outside of the Senate or House chambers. Legislators were very welcoming and many productive interactions between MS Activists and legislators took place in the hallways of the capitol. Activists discussed their personal story, the challenges of living with MS, financial strain due to the high cost of MS disease modifying medications and requested support on the bill. As a result of these conversations MS Activists discovered that many legislators had connections to someone who was living with MS, and were willing to support the MS priority legislation on prescription drug contracts.
Barbara Leonard, an experienced volunteer currently doing work on medical care in rural areas, says she found her interactions with New Mexico legislators on that day to be “… amazing! Our group met with two senators and one representative, and they were all fabulous. They were just coming into chambers when we showed up and introduced ourselves. They were very welcoming, and took time to talk with us. We discussed MS and the bill for continuity of prescription drug care and asked for their support. Overall it was a very positive experience, and I would certainly do it again.”
At the state capitol, NMSS Regional Director of Activism Mireya Zapata (left),
and MS Activists Stephanie Lopez (center) and daughter Breana,
discuss their upcoming meetings with state legislators.
Stephanie Lopez and her 17 year old daughter Breanna travelled from Carlsbad to participate in the Public Policy Conference. They were new to MS Activism, but Stephanie reports their experience was very positive. “This conference allowed me to feel empowered and it gave me a way to use my voice. Now I know that by being involved I can represent myself and others with MS. I’m really looking forward to doing more in future advocacy efforts.”
Government Relations Committee: Leaders in the MS Movement
GRC Co –Chair Jennifer Gomez Chavez travelled to Washington DC
for the National Public Policy Conference,
where she represented New Mexico and discussed MS priority legislation
in meetings with members of Congress on Capitol Hill.
The New Mexico Government Relations Committee (GRC) is a group of MS activists who have committed to being highly engaged in the MS Advocacy movement.
They have taken the lead in inviting state officials and staff to participate in local MS Walks. At Roswell Walk MS they arranged for both Mayor Pro Tem Jason Perry and Senator Jennings to attend the event and be part of the program. Sen. Jennings spoke with the crowd about the continuity of prescription drug care bill, which he hopes to continue work on in 2013.
Thanks to invitations extended by MS Activists, Walk MS in Albuquerque was pleased to have Crystal Romero, Constituent Liaison Congressman Martin Heinrich’s office, and Patrick Duran, Field Representative with Representative Lujan’s office, present to address attendees. Both braved high winds and a billowing Expo tent to speak on the importance of supporting legislation that affects people with MS.
At the Santa Fe Walk, MS Activists welcomed special guest Yolanda Deines, who works closely with Governor Martinez as the Cabinet Secretary for New Mexico Children, Youth, and Families Department. Ms. Deines spoke at the opening ceremony and told of her own experience living with MS and the challenges that it has presented for her. Her remarks were very well received by the crowd, who responded with enthusiastic applause.
Read an article in The Albuquerque Journal about Yolanda Deines and her experience with MS.
Jeanne Hamrick, who serves on the GRC, reports that both membership and commitment to MS Advocacy seem to be growing this year. “There are more people involved, and everyone is putting in more effort,” she says. Jeanne works to build connections in her community by attending as many town hall meetings and events as she can to help maintain contact with state officials, like Senator Tim Keller and Rep. Mimi Stewart, as well as local city officials. Thanks to her outreach recent NMSS Albuquerque Walk MS guests included Albuquerque City Councilor Don Harris; Elizabeth Dominick, from the Albuquerque Mayor's Office of Volunteerism and Engagement; and Albuquerque Commissioner Maggie Hart-Stebbins.
Jeanne says it’s helpful to have these relationships when you want to address an issue. For instance, when she discovered an accessibility problem at a local polling place, she emailed pictures to the County Commissioner’s office. “By that evening they had fixed the problem,” Jeanne said “and they also gave me a contact name and number to use in the future in case I encountered other issues.”
Beyond the PPC: A Bright Future for the MS Advocacy Movement in New Mexico
An important aspect of being an MS Activist is continuing to stay involved beyond the legislative session. A lot can be accomplished when legislators are not busy with the session demands, as they have more time to devote to constituents and to events in their districts. It is also a good time for activists to get to know the legislative staff, whose roles can be highly influential.
In the months since the PPC, Vicki Kowal, Programs and Services Coordinator in the Albuquerque NMSS office, reports that quality advocacy outreach efforts have increased.
“New Mexico MS activist confidence, skill, commitment, and enthusiasm have exploded since NM PPC.” she says. “Due to the advocacy training and subsequent experience at the state capital, MS activists no longer feel intimidated by meeting with their legislators. I’m happy to report that both the advocacy program in general and the GRC have new active members who are reaching out to local and state officials. More state officials are participating in our events, and we believe the momentum will continue.”