Written By: Rob Wudlick
Funding for spinal cord injury (SCI) research and other types of medical research is inadequate.
As of 2015, about 14 percent of grant applications are approved by the National Institutes of Health for SCI research, annually. Life changing innovations which are currently being developed are delayed or abandoned due to lack of funding. On this list include SCI early stage trials for spinal cord stimulators that have reported improved motor control and other autonomic bodily functions (such as sweating, urinating, and sexual function) along with other developing interventions. That is why I chose to advocate for a state supported bill for SCI research.
As of October 2015, about 12 states have supported SCI research funding programs. These programs have helped start and foster baseline funding for some of the world’s leading centers for SCI research. My involvement started about a year after my injury in 2012 on a typical cold and snowy day in Minnesota. While exercising at a local locomotive rehabilitation facility, I met Matthew, the father of another boy, Gabe, who had been injured. Two years earlier in 2010, Matthew met with his state representative (now state senator) and they introduced a Minnesota bill for spinal cord injury research. That first year was late into the legislative session, so not much progress was made. The second year was a difficult session due to opposition to introducing new surcharges on traffic violations. When I joined the SCI research effort, in the third year, we had joined forces with traumatic brain injury (TBI) advocates and had a bill that allocated funds from the Minnesota Department of Health & Human Services (HHS) and distributed them equally to both SCI and TBI research.
Soon I was asked to testify before the HHS finance committee on April 4, 2012, the first year anniversary of my injury. This was my first major step into anything political. Entering the Capitol that day was more than overwhelming. Protesters rallying in the rotunda about their special cause, politicians, police, lobbyists, and media were all scurrying the maze of the enormous 110 year old historical building.
Testimony started with a state senator, myself, Walt Low, a well-respected neuroscientist from the University of Minnesota, and Matthew, the father who started the dialogue on the bill, all in front of 15 senators in a room packed with over a hundred people. We stated noteworthy reasons to pass the legislation. I summarized by stating, “I want my body back.” The hearing was well received and the committee voted unanimously in our favor.
That same year, the bill stalled and didn’t make it to the next step in the process.
The year after that, we tried using the same bill structure but didn’t have any success again in the off budget year (typically, Minnesota does a biannual budget and focuses on budget issues one year, then policy issues the other year). Worse, we learned there was a group of citizens opposing our bill.
Our fifth and final year, we raised the attention of a well experienced policy director from one of the state’s major hospitals. We formed an official partnership with them and they brought their well-respected name and professional lobbying personnel to help us with the bill. We also had a strong advocacy group of about 10 active people, about 60 somewhat engaged Minnesotans, and almost 2,000 people internationally on our email list to write letters. By identifying where our Minnesotans lived and meeting with over 60 strategic representatives and senators we quickly gained positive attention. Our bill had also switched funding mechanisms to the state Higher Education Department, with the message that most research happens in higher education institutions.
By going to the Capitol at least once a week, sometimes five days a week, meeting with and following up with state legislators, we gained over 30 cosponsors on our bill. Even then we had to continuously monitor, address, and adjust our message to fit into the state budget. By the time the bill hit the final conference committee (where the House and Senate meet to build a final budget bill that both bodies can agree on to send to the governor), we still weren’t sure if the bill was going to be passed. It passed! Then was quickly voted on and signed by the governor in under a week!
Public policy advocacy usually takes years of enduring work, strategic planning, experienced support, and lots of challenges that most would not expect. I like to think of it not as a marathon, it more like a “Tour de Cause”, with many small races with victories and failures. Through the experiences and relationships I have built by attending United Spinal Association’s ‘Roll on Capitol Hill’ and Unite 2 Fight Paralysis’s ‘Working 2 Walk’ conferences along with a few years of experience of my own, I am still learning how to make positive changes in our government to help many people. Passing this legislation started with one person, but was accomplished by many groups working together. We achieved success and this is a good model of how you can do the same in your state.
Talking points for our bill/ program are:
- Since over $40 billion are spent annually on healthcare costs for those with SCI and the government pays for most of this, the government would see a return on investment on research for functional improvement for SCI’s. About 30-40% of people with a SCI eventually return to work, it can be estimated that at least $24 – $28 billion is covered by the government.
- Other states have seen more funds from the federal level when the state has a baseline funding source for SCI research. California generated $86 million with $14 million raised from state funds for SCI research.
- The Spinal Cord & Traumatic Brain Research Grant Program (Laws of Minnesota 2015, Chapter 69, Article X, Section 13) would build high paying jobs in the state and increase the biotech industry.
- This would benefit a global humanitarian cause that could improve millions of lives suffering from diseases that extend beyond SCI.
To learn more contact the author, Rob Wudlick, Policy Advisor, United Spinal Association’s Minnesota Spinal Cord Injury Chapter at email@example.com.