APFED HILL DAY (May 17th) UPDATE!

            HR296 unanimously passed in the House of Representatives on May 15th 2007, forever marking the third week of May National Eosinophil Awareness Week. Many thanks to all of you who called and emailed your Congressman urging support for this bill! This represents a NEW BEGINNING for our community!
            Our first Hill Day was an astounding success as we educated legislators about eosinophilic disorders and the needs of the community. In the near future, increased funding for research, formula coverage and ICD-9 codes are top priorities.
            On Thursday May 17th, Representative Nancy Boyda (D-KS-2nd) spoke to the House about eosinophilic gastrointestinal disorders. During her speech, she mentioned one of our members, 11 year-old Jessica Seidel and her struggle with EG. Congresswoman Boyda said the hundreds of letters she received in support of HR296 and Jessica impacted her decision to speak to the House on EGID. Following the speech on the house floor, Jessica was taken to meet Speaker of the House Nancy Pelosi!
If you have ever wondered if your calls and letters make a difference, they DO!
            Ross Pediatrics (makers of EleCare) generously sponsored our Congressional Briefing and Luncheon at the Library of Congress. Dr. Jonathan Spergel came down from CHOP to educate staffers and Congress about eosinophilic diseases. We had two children speak about their experience with eosinophilic gastroenteritis, including 11 year-old Jessica Seidel. Both courageous young ladies were well-received! Families interacted with multiple Congressional staffers, a few of whom had personal connections to the disease.
            Our Hill Day families met with multiple legislators on both the House and the Senate side to discuss the next steps: Partnerships with governmental agencies to develop programs for research and epidemiological studies on eosinophilic diseases. We were also fortunate to find a health care specialist interested in developing a plan of action for federal formula legislation. These larger projects will take time, but Congress now knows we are here!

Next up- Senate bill (S1161)! We need your help immediately!
Call or email your SENATORS now in support of S1161 the Medical Nutrition Therapy Act of 2007.  (Sponsored by Senator Bingaman, D- NM) This bill extends CMS coverage of nutritional counseling and dietary management to other diseases that might benefit from nutritional therapy. CMS currently only covers diabetes and renal disease. Commercial insurers tend to follow CMS’s lead on coverage.

Key points:

1. Bipartisan, cost-neutral bill
2. Covers consultation for dietary and nutrition counseling with a registered dietician
3. Does NOT cover formula costs
4. We have only 3 weeks before this bill goes to the Senate floor. ACT NOW!

Please support this bill for all patients on restricted diets! Continue your fights at the state level for formula coverage mandates – although federal formula legislation remains one of our goals.

WHAT TO DO/ WHAT TO KNOW!
1. Call your Senator’s office
Find them at:   www.senate.gov
2. Call and urge them to become a cosponsor of S1161 and why it is so important to extend dietary counseling services to other diseases
3. Email beth@apfed.org and let me know you did so and who your Senator is
4. We have 3 weeks before this goes to the Senate for a vote