Marilyn’s Message January 2017

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Elaine Monarch founded Celiac Disease Foundation to give voice to the millions of celiac disease sufferers who were being systematically ignored by doctors, medical researchers, and our government.  A major part of our work over the last 30 years has been advocacy, including a successful campaign to secure gluten-free labeling regulations.

Today, I am writing to you as both CDF’s Chief Executive Officer, and as the mother of a child with celiac disease.  The Affordable Care Act (ACA), while far from perfect, was a step in the right direction for individuals and families impacted by chronic and potentially costly medical conditions, including celiac disease. It included critical protections that have bipartisan support. We in the celiac and the non-celiac wheat/gluten sensitive community must fight to ensure that whatever is developed to “repeal and replace” ACA preserves these mandated patient protections.

Why must you and I get involved to protect these common sense measures in any emerging healthcare solution? First, there are millions of Americans who have yet to be diagnosed with celiac disease. Any reform that limits access to care will hurt their chance of finally getting the correct diagnosis and ending their suffering. Second, it is URGENT that for those already diagnosed with celiac disease, a chronic and, as of now, incurable autoimmune disease, protections in the ACA be retained that:

  1. prevent denial of coverage for pre-existing conditions,
  2. allow children to stay on their parent’s plan until 26,
  3. eliminate lifetime coverage caps, and
  4. control patient out-of-pocket costs.

Even if you feel fine now on your gluten-free diet, researchers tell us that the likelihood of you or those related to you suffering complications, including other autoimmune disorders, is exponentially higher than for the general public.

Please, do not sit on the sidelines and think this will all workout okay without your participation.  We owe it to ourselves, to our families, and to our fellow community members to make this right. The quality and the quantity of our engagement WILL make a difference.  Right now, take a moment and become a part of our ACA “Repeal and Replace” Campaign.  We will send you periodic action steps that we will be taking in concert with millions of other autoimmune patients around the country.  We will keep you informed as to our progress and the progress of the campaign.

To take immediate action, visit our Contact Congress page to write, email and tweet your legislators.

To Our Health,

Marilyn G. Geller
Chief Executive Officer

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