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A Day on the Hill

Lisa Crosby Metzger

Oley Foundation members, friends, and allies working
together to advocate for you on Capitol Hill.

          A short time before travel advisories were issued due to COVID-19, Oley members, staff, and supporters joined members, staff, and supporters from other, like-minded organizations in Washington, D.C., for the Digestive Disease National Coalition (DDNC) Spring Public Policy Forum. We spent the first day listening to an impressive lineup of representatives from: the Food and Drug Administration (FDA) and Patient-Centered Outcomes Research Institute (PCORI); companies that are developing treatments for digestive diseases; and fellow DDNC member organizations. We learned about legislative issues of interest to the DDNC community and any pending bills that could address those issues. The next day, we visited legislators’ offices as smaller groups, using what we’d learned and what we already knew to help legislators understand why they should support these bills, as well as support funding for digestive disease research.

            By the end of the day, between us, we had met with staff in the offices of seventy-six legislators—forty-two House members and thirty-four Senators, representing twenty-seven states plus the District of Columbia—sharing stories in the hope of “putting a face” to the issues and personalizing the bills. At the end of the day, the groups—tired, but satisfied with a good day’s work and more than the 10,000 steps our fitness apps recommend—met to debrief and share notes so we and DDNC staff could most effectively follow up on the visits.

Access to Patient Care

             The theme of the forum was “patient access to care.” The main priorities among all of us were the issues outlined below, but as each group made their visits, the stories varied, depending on the group and the audience. My group (New York), for example, was made up of a couple of nonprofit staff (like me), a gastroenterologist, and someone who has a rare gastrointestinal disorder that, when it developed, has changed their life. We each introduced ourselves and talked a little about the issues, but we always ended with the patient story. It was the most compelling, the story that would be remembered, and the reason we were all there.

              As it is central to many in the home parenteral nutrition (HPN) community particularly, representatives from Oley and the American Society for Parenteral and Enteral Nutrition (ASPEN) were sure to mention the significant problems IV drug shortages are creating for our members. Other high priorities for Oley and ASPEN, in addition to the bills listed below, included the need for updates to the Center for Medicare and Medicaid Services (CMS) rules regarding coverage of HPN; and the current problems with pricing of HPN ingredients as they achieve FDA approval under FDA’s Unapproved Drugs initiative (more on this in an upcoming issue).

              As a group, at this year’s Spring Public Policy Forum, we advocated specifically for the passage of the following bills:

  • The Safe Step Act (S.2546/H.R.2279)
  • Medical Nutrition Equity Act (H.R.2501)
  • Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2019 (H.R. 3396)
  • Patients Access to Treatments Act
  • Removing Barriers to Colorectal Screening Act (S.668/H.R.1570)
  • Gluten in Medicine Disclosure Act of 2019 (S.3021/H.R.2074)

              Watch for more details on these concerns and suggestions on how you can make your voice heard in coming issues of the newsletter or visit www.oley.org/legislation.


An Oley Member’s Experience    

              I have gone to DDNC for seven years and each year I go, I feel more invigorated and more passionate about advocating for the American digestive disease community. There are many issues being discussed and bills on the table in the House and the Senate involving digestive diseases. Most people are very much unaware of them, but they will be affected by whether these bills are passed or not passed.

              It is amazing to see that as Americans, we do have an opportunity to express our concerns to the people who can make things happen. It is one thing to be able to express ourselves on social media. It is another to make things happen because we actively participated in advocating for an important cause that will affect millions of people.  


—Lynn Wolfson, Oley Ambassador

 


 LifelineLetter, March/April 2020


This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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