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Stroke Advocacy Network Newsletter


JULY 2011


Lobby Day Was a Success!

In late June, National Stroke Association brought a group of stroke survivors and caregivers to Washington, D.C., to advocate for stroke-related legislation pending before Congress. These advocates came from across the country—representing 19 different states.

They heard from a variety of speakers, including Dr. Walter Koroshetz, the deputy director of the National Institute of Neurological Disorders and Stroke (NINDS). He spoke to the group about stroke-related research occurring at the Institute. Advocates were also able to ask questions of congressional staff who are working for members of Congress trying to pass stroke-related legislation.

IN THIS ISSUE

Lobby Day Was a Success!

Lobby Day Participants

Debt Ceiling Negotiations

NIH Funding

On June 23, our advocates went to Capitol Hill to speak to their members of Congress—one representative and two senators—about several stroke-related issues. They met with a total of 60 members of Congress, asking them to:

  • Maintain federal funding for medical research related to stroke to reduce the incidence of stroke in the future;
  • Eliminate the annual cap on Medicare coverage for physical, speech and occupational therapy so stroke survivors get the vital rehabilitation therapy they need to regain their quality of life;
  • Allow Medicare Part D to cover off-label uses for prescription drugs so stroke survivors have access to all medically appropriate treatments; and
  • Help improve women’s ability to prevent and control chronic diseases, including stroke.

Many of our advocates had no previous experience talking to their elected officials—at any level of government (federal, state or local). National Stroke Association provided them with information and guidance to prepare them for their trip, especially for their meetings on Capitol Hill. They did an amazing job representing themselves and the millions of stroke survivors and caregivers in the United States who could not be on Capitol Hill that day. National Stroke Association would like to thank all the advocates who gave their time and energy to make our 2011 Lobby Day a success!

In addition to this in-person Lobby Day, National Stroke Association conducted Virtual Lobby Days from June 23 through July 1. Over 400 Stroke Advocacy Network members took part, sending over 1,200 letters to members of Congress representing 45 states! These letters asked members of Congress to support the same issues that our advocates talked about on Capitol Hill. If you sent a letter, please know that our advocates in Washington, D.C., were inspired by your actions. Many of them commented that knowing other stroke survivors and caregivers were contacting their members of Congress on the same day they were on Capitol Hill made them feel even more empowered to make a difference. Thank you to everyone who participated in Virtual Lobby Days for supporting our Washington, D.C., advocates and making your voice heard on Capitol Hill.

Lobby Day Participants: In Their Own Words

Many of the advocates who participated in National Stroke Association’s 2011 Lobby Day in Washington, D.C., had never actively participated in government prior to this event (other than voting). However, many were surprised to discover how much fun they were having learning about advocacy and speaking to their members of Congress and their staff about stroke-related issues. Another common feeling expressed by our advocates throughout the two-day event was how meaningful it was for them to be in Washington, D.C., promoting legislation that could improve the lives and recovery of other stroke survivors and caregivers. Here are some thoughts from a few of our advocates about their experience in Washington, D.C.

David

I recently participated in National Stroke Association’s Lobby Day in Washington, D.C. My intent was to be the voice of the 7 million stroke survivors in the United States—an ominous responsibility but also an incredible opportunity.

Photo of David  

David is a stroke survivor living in California.

I am convinced that, as a group, the other advocates and I made an important and powerful impact on our U.S. senators and representatives. We put a face to stroke and told our respective stories about how, when, where and why we had our strokes. Our representatives and their staff were taking copious notes and asking the right questions, such as:

  • How can we help reduce the incidence of stroke?
  • How can we help reduce the costs associated with stroke?
  • How can we get the best possible recovery to stroke survivors?

I will be following up with our senators and representatives on a fairly regular basis to make sure we keep our message at the forefront of their minds. Thank you, National Stroke Association, for making this event happen.

Tony and Pat

This was our first time visiting the Capitol and Congress and we were very impressed by both.

Photo of Tony and Pat

Tony is a caregiver for his wife Pat, who is a stroke survivor. They live in Illinois.

We got to meet our representative—Congressman Aaron Shock. We ran into him in the hallway after our meeting with his aide, and he asked us to come back to his office so he could arrange a tour of the Capitol Building for us, which was a big surprise we were not expecting. We were able to put in a few "plugs" for stroke-related issues while waiting for the tour, and he seemed receptive, especially about not cutting funding for the NIH.

We talked to aides that work for our two senators, and they both said that cutting NIH funding was not in their bosses’ plans. One even said that her boss was interested in increasing NIH funding but that it would be hard to do with current attitudes by many members of Congress to cut spending.

I hope that our trip was productive for National Stroke Association and the millions of stroke survivors and caregivers that they represent. One of my favorite sayings is "Stroke survivors never give up," and my wife Pat is living proof that they do not!

Maurine

I felt privileged to be asked to speak to our national lawmakers on behalf of stroke survivors in our country and to help educate them on the difficulties stroke survivors and caregivers encounter. It was also wonderful to be with the other advocates who, like me, have endured the trials of stroke and are able to speak and understand the unspoken language of stroke survivors and caregivers.

 Photo of Maurine with her husband Ron

Maurine is a stroke survivor living in Michigan.

National Stroke Association’s Lobby Day was a great opportunity to empower advocates to share their personal stories in a way that can make a big difference for all stroke survivors and their families. On Thursday, June 23, my husband Ron—who is my chief caregiver—and I made our way to Capitol Hill with the rest of the advocates. Ron and I visited the offices of Michigan’s U.S. Senators Debbie Stabenow and Carl Levin and Congressman Mike Rogers. We shared our stroke story, the challenges we encountered and the hopes that funding would be maintained for the NIH, which is instrumental in researching stroke and other neurological diseases. How awesome to be able to express our experience firsthand, to walk into the offices of our members of Congress, tell our story and request their assistance on behalf of all stroke survivors.

 

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Debt Ceiling Negotiations May Include Entitlement Cuts

Congress imposes a limit on the amount of debt the federal government can incur. In order to borrow more than that amount, Congress must increase what’s called the “debt ceiling,” which has been done many times in the past. The U.S. Department of the Treasury has determined that the federal government will reach the current debt ceiling in early August. This means that, at that time, the federal government won’t be able to pay for the programs it operates or the services it uses.

Negotiations around this issue have focused on using entitlement reforms, including Medicare and Medicaid, as a way to cut federal spending. While official negotiations are ongoing, many lawmakers have indicated that entitlement reform will be an integral part of any federal spending deal. The primary House proposal—The Paul Ryan Plan—focuses on large-scale reform, including converting Medicare into a voucher program and cutting Medicaid spending. Democratic plans focus mainly on reforms that would cut costs of the program while preserving their existing structure and benefits. It is important to note that negotiations on this issue are ongoing.

NIH Funding

Now is a crucial time to remind your members of Congress how important it is to continue full funding for the National Institutes of Health (NIH), which includes the National Institute of Neurological Disorders and Stroke (NINDS). NINDS conducts important medical research to reduce the impact of neurological disease and stroke, including research of prevention and treatment efforts.

During the month of July, the House of Representatives will be making budget decisions that will determine next year’s funding levels for the NIH. Earlier this year, the House passed a budget resolution that identified the total amount of funding available for labor, healthcare and education programs run by the federal government. That resolution reduced the amount of funds available to these programs by nearly 12 percent. Therefore, the NIH will have to compete with all the other programs in this category for a much smaller amount of available funding. We urge you to take action today to support stroke research by telling your member of Congress how important NIH funding is to you. Respond to the current Action Alert calling on Congress to maintain NIH funding at current levels for the next fiscal year.

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 Supported by Boehringer Ingelheim Pharmaceuticals, Pfizer, Inc., and The Medtronic Foundation.