Day on the Hill 2019: The Faces of IBD Legislation

Last year, I had the honor of attending my first Day on the Hill (DOH) organized by the Crohn’s & Colitis Foundation (http://ownyourcrohns.com/dayonthehill/). After such a rewarding and empowering experience, I’m thankful to have been invited back with 100+ other advocates to represent my fellow inflammatory bowel disease (IBD) warriors on the Hill again this year.

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LEGISLATIVE TRAINING

This past week we kicked off DOH at the Capitol Hilton in Washington, D.C., with a panel on Patient Advocacy & Empowerment moderated by Advocacy Committee Chair of the National Council of College Leaders (NCCL), Bianca Hernandez. The panelists involved were Dr. Thomas Ullman, Chief of Gastroenterology at Montefiore Medical Center; Natalie Murphy, a mother and caregiver; Scott Gringauz, another NCCL member; and me as a patient advocate. Throughout the panel, we were asked all sorts of questions, ranging from how to empower patients of various age groups and how to prepare to advocate effectively during our legislative meetings.

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Following that, there were a number of legislative training sessions from Civics 101 to the Clinical Trial Community  (Laura Wingate, SVP, Crohn’s & Colitis Foundation) to How to Conduct a Legislative Visit and Understanding the Asks (Sarah Buchanan, Director of Advocacy, & Jake Johnson, State Advocacy Manager, Crohn’s & Colitis Foundation). There were very entertaining skits on How a Bill Becomes a Law (performed by Danielle Gulden & Joseph Teeters of Double Baggin’ It) and How Not to Run a Legislative Meeting (performed by Amy Bugwadia, Grady Stewart & Anna Gordon, all members of the NCCL). Congressman Ander Crenshaw also gave a talk on why it is so important for us all to advocate on behalf of our IBD community.

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THE ASKS

We advocates also met together in our teams by state to discuss how we would run our legislative meetings and which experiences we could share as patients, medical providers, caregivers, etc. The asks included supporting HR 2279 The Safe Step Act and S1194/HR2587 The Medical Nutrition Equity Act in addition to joining the Crohn’s & Colitis Caucus chaired by Congresswoman Carolyn B. Maloney.  

With regard to the first bill, “step therapy” is a cost-saving insurance protocol that requires patients to fill an insurer-preferred medication before receiving coverage for the physician-prescribed medication. This bill would require insurance companies to implement a clear appeals process and a quick turnaround for appeals (within 24 to 72 hours).

The second bill, the Medical Nutrition Equity Act, would ensure that insurance covers medically necessary foods for IBD patients. This includes enteral nutrition, such as oral liquid nutrition that circumvents the use of intravenous (IV) lines and feeding tubes and still meets the requirements for daily nutrition. These foods can cost anywhere from $10-60 per day, so many patients opt to have feeding tubes placed that insurance will cover. This is especially the case for pediatric patients, for many of whom medical nutrition is a first-line therapy that can often result in remission of their disease.

LEGISLATIVE MEETINGS

The next morning we kicked off our legislative meetings after a brief training session. And this is where the real excitement began. Now we had to put all our training and practice to the test! Our team, Team New York, was comprised of Dr. Thomas Ullman (Chief of Gastroenterology, Montefiore Medical Center), Dr. Joseph Picoraro (Pediatric Gastroenterology, Columbia Presyterian Hospital), Michelle Kissous-Hunt (Patient & Physician Assistant, Fifth Ave GI Specialists; National Board Trustee, Crohn’s & Colitis Foundation), Rosanne Mottola (patient advocate), Amira Eissa (patient & NCCL member), Dana Hubbe (patient) & her children/caregivers, Chloe & Connor Hubbe, and last but not least, me as a patient advocate. Most of us attended 6 meetings with the following legislators’ offices: Senators Charles Schumer and Kirsten Gillibrand in addition to Representatives Nita Lowey, Carolyn Maloney, Jerrold Nadler and Max Rose.

We roared through our meetings as we brought a variety of skills to the table from medical prowess to patient expertise in both step therapy and medical nutrition. We brought cogent stories, significant understanding of the lawmaking process and compelling arguments to each legislator’s office. We helped each office understand why step therapy needed a proper timeframe in which appeals needed to be addressed by insurance companies and why medically essential foods were considered first-line therapy as prescribed by GI physicians. We also asked the representatives who were not part of the Crohn’s & Colitis Caucus to consider supporting our cause. These 3 asks were very well-received and we are hoping for co-sponsorship and at the very least, significant support from New York legislators on these initiatives to support our fellow IBD patients.

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THE RESOUNDING IMPACT

As we now begin to send lawmakers thank-you letters, I realize the welcome we were shown, the compassion we were given and the impact we as patients can make by sharing our stories. I returned to New York beyond exhausted but far more impassioned than ever to continue my advocacy work. If we can chip away little by little by promoting legislation that supports our cause, we can effect change for ourselves and for future generations suffering from IBD.

DOH was an important way to show legislators the faces of IBD, from patients to their caregivers and providers. And it was a beautiful way of empowering us to make an impact on a larger scale. I have no one but the Crohn’s  & Colitis Foundation to thank for the opportunity to serve my community.

So, own your Crohn’s, own your IBD, and take charge of what you can do to make a difference in helping our IBD brethren lead fuller and healthier lives.

~~~LOVE, LIGHT & PEACE~~~

**As always, I’d love any feedback, comments or questions you may have on the content you see on my blog. Feel free to reach out!**