Impact Profile: MS Navigator Supports a Personal ‘180’
In 2014, Patti Hinzman and her husband moved to a farm ten miles from the small town of Julesburg, Colorado, near the Nebraska state line. Her husband, who has been caring for Patti for the past several years as her MS has progressed, now works 15 hour days to make ends meet. MS is “an unwanted burden” in their lives that has put a strain on almost everything. As they both approach 60, it has become clear that their retirement will look much different than they had imagined.
Patti is not alone. For too many people living with MS, significant challenges and roadblocks prevent them from living their best lives. Disease progression, lacking social programs, and environmental factors can present seemingly insurmountable obstacles.
When Patti was referred to the National MS Society, she was in a very challenging situation. She and her husband were behind on their utility bills, they had no accessible transportation options and no health insurance, which meant that Patti was not on medication or being seen by a neurologist. Patti’s scooter batteries needed to be replaced and the couple couldn’t afford new batteries, so she was mostly confined to her bed and had taken several falls trying to move around the house. Due to her husband’s long work hours and the remote location of their home, Patti – a self-described social butterfly – was extremely isolated.
The Society responds to complex and difficult situations like Patti’s through a nationwide network of supportive partners called MS Navigators. Through personal outreach and needs assessment, MS Navigators connect people living with MS to the lasting solutions they need to live their best lives.
Given the of complexity of Patti’s needs and her remote location with limited support and resources, Patti’s MS Navigator connected her to intensive case management services through the
Edward M. Dowd Personal Advocate Program.
Patti’s case manager, Dayna, was able to negotiate the donation of an accessible van from the family of another client who had recently passed away. She located community resources to pay past-due utility bills and purchase batteries for Patti’s scooter. She also got Patti set up with Medicaid and a neurologist.
With Medicaid coverage, Patti is now back on a disease modifying therapy and has home health aides who help around the house and provide companionship. She and Dayna are currently working on dental care and a service dog.
Dayna has been a lifeline for Patti. “The MS Society comes through for me every time I feel like things are hopeless. The day I met Dayna was the day my life changed. I can’t even put into words how much it means to me.” Patti also reports that her husband has done “a 180” since they started receiving the extra help. Now that he no longer has to be a caregiver, he can be a husband again.
As the Society’s Executive Vice President of Advocacy,
Bari Talente ensures that people affected by MS are able to use their voices to drive policy change at the federal, state and local levels
Q: Bari, can you tell us why Advocacy is a critical strategic activity of the Society?
A: People with MS are often confronted with numerous barriers each day that can prevent them from living their best lives. By amplifying the voices and stories of people affected by MS to drive policy change and create resources, we eliminate systemic barriers and accelerate life-changing breakthroughs– breakthroughs that ensure people have what they need to overcome the challenges of MS. Our success in advocacy is also critical to securing vital funding to fuel research breakthroughs that will uncover the treatments and solutions necessary to stop MS, restore what has been lost and end MS forever.
Q: What are the advocacy initiatives the Society is focused on to accelerate research breakthroughs?
A: Advocating for increased research funding through both the Congressional Directed Medical Research Program (CDMRP) and the NIH is an ongoing priority. The CDMRP has a specific line for MS research and through the commitment and persistence of our activists, we have secured $40 million through the source since 2009.
In addition to funding, Society activists have also been pivotal in passing policy that will help to accelerate the discovery, development and delivery of life-saving treatments and improve the day-to day lives of people with MS.
Q: Is this what the recent passage of the 21st Century Cures Act was all about?
A: Yes, this bill represents a huge success for the MS movement for it advances many of our top priorities including establishment of a data collection system to track the incidence and prevalence of neurological conditions – providing researchers critical clues to stopping and ending MS; $4.8 billion in new funding for the National Institutes of Health and $500 million for the Food and Drug Administration to bring new treatments to patients; A six-month extension protecting access to power complex rehabilitation technology (CRT) wheelchair accessories, which are fundamental components of chairs people living with advanced MS often use.
Q: Wow, what a success! Can you tell us about the other ways advocacy works to fuel life-changing breakthroughs for people living with MS?
A: Health care is a main issue of concern for people living with MS, especially access to MS medications and health insurance coverage. While we know health care and the cost of medications is a topic of much discussion by the government these days, the voices and perspectives of those who rely on life-changing medications and health insurance coverage are not included in the conversations. Currently, Society activists are leading the way in focusing the conversation on the patient experience, highlighting the components of health coverage that people with MS need and the critical fact that medications and the process for getting them need to be affordable, simple and transparent.
Other considerable challenges for people with MS that we work to alleviate include compliance with the Americans with Disabilities Act (ADA), long-term care, and transportation.
Q: What can Society supporters do to help to drive change through advocacy?
A: Join the MS activist network to learn what critical advocacy efforts are happening right now. Getting involved can be as easy as a phone call or email or sharing your story directly with elected officials at a State Action Day or legislative hearing. There are also many opportunities to support the Society’s efforts to convene and train our nationwide network of activists. It’s incredibly inspiring for people living with MS to have their voices heard. When you fund the Society’s advocacy opportunities, you are helping people with MS realize they have the power to make change happen.