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Stroke Advocacy Network Newsletter

February 2011

Message from the Director | Legislative Update | What You Can Do Today!

Message from the Director

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Click above to watch a short welcome video.

I am pleased to present you with the inaugural edition of the Stroke Advocacy Network Newsletter. The Stroke Advocacy Network is a grassroots advocacy effort that is lead by National Stroke Association but dependent on individuals like you to succeed.

From Medicare reimbursement for rehabilitation therapies, to research funding, to supporting survivors returning to work, federal programs play a critical role in the lives of stroke survivors and their families. Yet many legislators do not have all the information they need to make decisions that will best benefit the stroke survivor community. That’s where you come in! The only way your elected officials will know which federal programs are the most beneficial to stroke survivors is if you tell them.

The Stroke Advocacy Network is here to support you – whether you are a stroke survivor, caregiver, friend, family member or healthcare provider – to become an informed and effective advocate. Join the Stroke Advocacy Network today and be on the lookout for Action Alerts (email requests to contact your legislators) as opportunities arise. Get ready to speak out and share your story!

Jill Thiare
Director, Professional Membership Programs and Advocacy


Stroke Advocacy Network Priorities

Through stroke survivor and caregiver surveys, steering committee conference calls and advice from expert consultants, National Stroke Association has identified the following critical issues to be addressed by the Stroke Advocacy Network in 2011:

  • Improving access to care
  • Enhancing Medicare and private insurance coverage of stroke-related services
  • Expanding support for stroke survivors who return to work and school

Legislative Update

Final Words on the 111th Congress

As you’ve surely heard, the 111th Congress passed a major healthcare reform bill called the Affordable Care Act. The most important provisions for stroke survivors are:

  • Beginning in 2014, insurance companies will not be allowed to deny coverage based on medical history or health risk. In addition, they will not be allowed to charge higher premiums based on an individual’s medical condition.
  • Also in 2014, individuals not covered by an employer’s insurance plan will be able to purchase coverage through a private insurance exchange – which must comply with what is known as an “essential benefits package.”

As the healthcare reform regulatory process moves forward with the 112th Congress, the Stroke Advocacy Network will monitor the services to be included in the essential benefits package. We will be asking Stroke Advocacy Network members to help deliver messages to their legislators about why the post-stroke services survivors most need must be considered essential. Make sure you receive these Action Alerts by joining the Stroke Advocacy Network.

Other important legislative initiatives for stroke survivors addressed by the 111th Congress in 2010 included:

  • Therapy caps: Speech and physical therapy caps were implemented as part of the Balanced Budget Act of 1997 in an effort to reduce Medicare spending. The current cap is $1,860. In December of 2006, Congress passed the Tax Relief and Health Care Act of 2006 that provides exemptions to the therapy cap for medically necessary treatments. In late 2010, Congress extended the exemption to December 31, 2011.
  • Part D Off-Label Prescription Parity Act: Introduced by Rep. Mary Jo Kilroy in July 2010, the Part D Off-Label Prescription Parity Act (HR 5732) would have amended Medicare Part D to permit prescription drug plan sponsors to expand coverage of drugs that are currently covered by Part D, but have additional uses – if they are supported by the Secretary of Health and Human Services and by clinical evidence in peer-reviewed medical literature. The bill was referred to the House Committee on Ways and Means but did not advance any further and Rep. Kilroy lost her reelection bid in the fall of 2010.

The Stroke Advocacy Network will monitor Congress for similar legislation and continue to provide updates to Stroke Advocacy Network members through monthly newsletters and occasional Action Alerts.

What We Can Expect from the 112th Congress

The November 2010 elections brought forth some big changes, specifically a switch in leadership in the U.S. House of Representatives. The new House leadership has indicated that repealing healthcare reform will be one of its top priorities. The House was scheduled to vote on the Repealing the Job-Killing Health Care Reform Law Act (HR 2) on January 12, 2011, but the vote was cancelled after the events in Tucson, Arizona on January 8, 2011. When the vote took place during the week of January 24, 2011, the bill passed the House.

At the same time, the U.S. Senate leadership has remained in the hands of those who originally supported healthcare reform, which could make it difficult to pass a sweeping repeal through the Congress. In addition, President Obama would be unlikely to sign such a repeal. In short, while it is likely that some changes will be made, a comprehensive overhaul of the Affordable Care Act is not anticipated.

Much of the action surrounding healthcare issues will happen through the federal agencies that will implement the provisions of the law. In addition to following the legislative environment, the Stroke Advocacy Network will be following implementation-related developments and alerting advocates as to when and how their voices can be most effective.

What You Can Do Today

  1. If you haven’t already, join the Stroke Advocacy Network. Joining is free and easy and will help you prepare to speak out on legislative and policy issues that will impact stroke survivors for years to come.
  2. The most important first step you can take to become an effective advocate is to research your legislators. Understanding their policy interests and the past positions they’ve taken on issues related to stroke will help you frame a message that is likely to capture their attention. Visit the Action Center for resources that will help you find out what you need to know about your legislators and how to use that information to start making a difference.

SAN Action Center with url

Find the resources you need to be heard on Capitol Hill. The Action Center provides access to the Advocacy Toolkit, resources that will help you learn more about your legislators, educational webinar programs and Action Alerts that make it easy for you to speak out on important issues.

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