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#NeverGiveUp: My Stroke Agenda

As a stroke survivor, I know better than most the value stroke research and rehabilitation plays in helping patients return to work and lead fulfilling lives. Since suffering a stroke, I have seen first-hand the disparity in rehabilitation and overall care for stroke survivors. Stroke is the leading cause of disability for adults in the United States and the 4th leading cause of death. Here are just a few other startling statistics:

800,000 Americans who suffer a stroke yearly
300,000 Stroke survivors in Illinois
$56 Billion Predicted lost wages annually by 2024
1% Percent of its budget the National Institutes of Health (NIH) spends on stroke research

The practice of rehabilitation differs across the country, resulting in scattered and inefficient resources. Survivors deserve better. It is my mission to create a standard of care to optimize the entire rehabilitation system—by transforming the way researchers, doctors, therapists and hospitals care for patients with neurological disorders and injuries—to give others the opportunity to have the absolute best quality of care possible.

My Story

In January 2012, following a sudden bout of dizziness and tingling in my hands, I suffered an ischemic stroke. Here's my story:

Jackson C.'s powerful story encouraged me to work even harder at my recovery. We began writing to each other on a regular basis, sharing our similar experiences. Since February 2012, we have remained in close contact, always encouraging each other to never give up and reminding each other how much is possible even in the wake of a traumatic, life-changing experience:


Learn more about Jackson and Senator Kirk.

Undoubtedly, my stroke has made me a better senator and a better man.

I want to make my life matter by doing work that matters to others. I was once a pessimist. I’m not that man anymore. And that change, brought about by misfortune, is the best thing that ever happened to me.

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My Stroke Agenda

A strong congressional response to stroke is crucial for the hundreds of thousands of stroke victims, their families and their friends in the United States each year. Here are just a few of the ways I am advocating for stroke survivors:

  • Returning To Work
  • Standard of Care
  • Access To Rehab
  • NIH Funding

A major step in recovery among stroke survivors is returning to work. I was fortunate enough to be able to climb the Capitol steps last January and then continue on to serve the people of Illinois in the Senate. To enable survivors of stroke, I have introduced the Return to Work Act of 2013 that directs the Secretary of Labor to promote assistance and awareness among employers through the Job Accommodation Network.

I am working closely with fellow Senate stroke survivor, Senator Tim Johnson (D-SD), to increase Congressional awareness of the debilitating affects of stroke and brain injury and to stress the need for a more coordinated federal effort to help stroke survivors like us return to work. Our bipartisan bill, S. 1027, will modernize NIH rehabilitation research for the first time in over 20 years so that it reflects the prevalence and complexity of disability in our country.

 

I am a cosponsor of the Regenerative Medicine Promotion Act of 2014 (S. 2126). This bill builds on our national success in stem cell research to give hope to those suffering from life-threatening diseases, such as stroke, by requiring a report identifying all ongoing federal programs and activities regarding regenerative medicine. Further, the bill creates a Regenerative Medicine Coordinating Council to coordinate research among federal agencies and set priorities and goals in order to make real progress. Regenerative medicine offers the only hope for new, acute treatments for stroke survivors.

I have been working to make it easier for stroke patients to access rehabilitation services. I have a bill with my Illinois colleague, Senator Richard Durbin (D-Ill.), which will expand access to rehabilitation innovation centers under the Medicare program. I have also authored a letter, along with 15 other Senators, to the Centers for Medicare and Medicaid Services that will preserve access at rehabilitation hospitals by maintaining the 60% rule. Congressional and Administration efforts to increase that rule will prevent stroke survivors from getting the specialized care they need.

I owe my life to medical professionals: the doctors who kept us alive, the surgeons that put us back together, and the rehabilitation specialists who helped us to regain our strength and heal our bodies. The National Institute of Health (NIH) is the nation’s medical research agency and the largest source of funding for medical research in the world.

As a member of the Senate Labor, Health, and Human Services Appropriations Subcommittee, I worked with my colleagues to increase the NIH budget from $29 billion to $30 billion for fiscal year 2014 in the final omnibus spending bill that the President signed into law on January 17, 2014. H.R. 3547 includes part of my proposed legislation, S. 1027, to modernize rehabilitation, and also includes an important $55 million increase for the National Institute of Neurological Disorders and Stroke (NINDS), the leading stroke research agency in the federal government.

With this funding, the NIH is initiating a revolutionary continuum-of-care research trial for stroke. Known as StrokeNET, these trials seeks to improve the spectrum of care for stroke patients, from acute to rehabilitation phase.

Illinois resident Pam Schroeder also owes her life to rehabilitation specialists like those at the NIH. Her story and thousands like it inspire me to continue advocating for strong NIH research investments and access to rehabilitation for the benefit of all Americans. Take a look:

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Share Your Story

If you or someone you know has ever been directly impacted by stroke, I want to hear your story. Please contact me here, or share your story on social media using #NeverGiveUp:

BERJAYABERJAYABERJAYA

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