March 4, 2009


Are you concerned about affordable health care? Have you had difficulty getting the health care you need based on your insurance coverage? If so, read more.

Over the last five years, the National Foundation for Celiac Awareness (NFCA) has worked tirelessly to spread awareness of celiac disease and the gluten-free diet in hopes of helping the three million Americans with this autoimmune disease live the healthiest lifestyle possible. Now, with the inauguration of a new President fighting for change across America, we find ourselves with another very important task.

We must work towards comprehensive health care reform that creates a health care system in the United States that provides quality, affordable health coverage for all.

Some of you may see this issue as a political fight, but all of us at the NFCA believe it is truly a patient’s rights issue. Every day, patients with celiac disease struggle to get diagnosed and, even those who are lucky enough to receive a prompt diagnosis struggle to get the proper care they need to manage a successful gluten-free diet.

The problems start at the point of diagnosis.

You’ve had symptoms for years and your doctor finally recommends a celiac test…but your insurance won’t cover the test. You’re then faced with a horrifying question. Do you spend $140 out of pocket for the blood test and the $1,000 for the endoscopy to confirm that diagnosis? You shouldn’t have to make this choice.

In a perfect world, everyone diagnosed with celiac disease would automatically be referred to a skilled dietitian for nutritional counseling. They would learn all about the gluten-free diet and how to properly manage it for the rest of their lives. Typical nutritional counseling sessions cost no more than $70, yet most insurance plans don’t cover them.

To help improve the system for everyone with celiac disease in the United States, the NFCA has joined Health Care for America Now (HCAN), a national grassroots campaign organizing millions of Americans to win a guarantee of quality, affordable health care for all. The campaign is made up of more than 700 organizations across the country that represent more than 30 million patients, doctors, nurses, senior citizens, small business owners, minority communities and local leaders.

Through sharing stories about our struggles with the health care system, NFCA is helping HCAN put a human face on this very complex public policy issue. We’re showing lawmakers why we need changes and demanding they happen in 2009. For more information about HCAN, please visit

We need your help and your story. Here are two ways you can join in with the NFCA and HCAN today.

Share your story. For example, did your insurance company deny coverage of a celiac blood test or endoscopy? Have you gone to the pharmacy to pick up a prescription medication only to find that it isn’t covered and is going to cost you a fortune? Would you like to see a dietitian for nutritional counseling but your insurance won’t cover it and it is too expensive to pay for out of pocket? Please click the following link to access the “share your story” form. You may remain anonymous, if you wish. However, we are looking for people who are willing to share their stories with the news media and lawmakers.

Sign up for the HCAN email List to get notifications about events in your area. There will be 42 media events in 42 states during the month of April. The events will be held between April 6th and 18th and you’re invited! Be sure to sign up to receive important updates about events near you.

Last week, in his first address to Congress, President Obama said, “Health-care reform cannot wait, it must not wait, and it will not wait another year.”

Hopefully, the President is right. We need quality, affordable health care for all, especially all of us with celiac disease, in 2009! For more information about the National Foundation for Celiac Awareness and information about celiac disease, go to