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Advocacy of the IPPF Through the National Health Council

A member of our Board of Directors and I attended the National Health Council’s (NHC) annual meeting February 11-13, 2009.The National Health Council sets operating Standards of Excellence for its members such as the IPPF and over 50 of the nations leading patient advocacy groups regarding budgets, policies for working with pharma companies and expenditures. The NHC advocates in Washington, D.C. and is the only organization of its kind that brings together all segments of the health care community to provide a united voice for more than 100 million people with chronic diseases and disabilities and their family caregivers.

Made up of approximately 110 national health-related organizations, NHC’s core membership includes the nations leading patient advocacy groups. Other members include professional and membership associations, nonprofit organizations with an interest in health, and major pharmaceutical, medical device and biotechnology companies.

The main thrust of this conference is the unique crisis and opportunity presented by our economic situation and the impact of the healthcare system.The NHC, as our advocacy arm in Washington, has developed the Campaign to Put Patients First. The Campaign to Put Patients First is a nationwide initiative dedicated to mobilizing people with long-term diseases and disabilities to achieve effective and affordable health care health care that meets their personal needs and goals. The NHC reported that the US spends TWICE as much as any other nation on healthcare and comes in 18-20th on quality measures.

Over the next three years, the National Health Council plans to recruit one million people with long-term diseases and disabilities to make their voices heard. The five health care principles that the NHC will advocate to healthcare policy makers in Putting Patients First are to:

  • Get health care coverage for everyone
  • Curb costs responsibly
  • Make sure everyone has coverage even if they have pre-existing conditions
  • Get rid of lifetime caps that limit the total amount of benefits provided by health insurance
  • Respect people at the end of life

These five health care principles for Putting Patients First will guide efforts to improve health care in this country. Many are joining the Campaign to make sure that the collective voice of people with long-term diseases and disabilities is heard.

How Individual Patients and Citizens can Help

SHARE YOUR STORY: As someone affected by a chronic disease or disability, you have a compelling personal story to tell. Why not tell it. Both policy makers and the media respond favorably to personal stories. By sharing your experiences in dealing with the health care system, you can persuade elected officials to ensure effective and affordable health care for all. We hope to record some videos at the IPPF Annual Meeting, or you can send the NHC a brief written story (preferably with a photo of yourself) or upload a video clip at As much as possible, please focus your story on our Five Health Care Principles ( and the personal challenges you have faced.

As Rebecca Oling did in offering to tell her story on the Richard Cohen Show last fall (, individual passionate stories can set the tone for change in a system that fails many of us. Stories can advocate for change and create awareness of those diseases that often fall through the cracks of our profit-driven healthcare system.

Please let the IPPF know if you are willing to be called upon for media opportunities for taping at our Annual Meeting, or for chances to tell your healthcare story before Congress.

EMAIL: [email protected] with the Subject line: Healthcare Advocate

PHONE: Call 916.922.1298.

You may also sign a petition online at the NHC website,

Together we will make a difference!

Pubblicato in Issue 58 - Fall 2009


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