[Opinion] Rep. Max Rose is Serving His Constituents Well in D.C.

Last week I had the great privilege to represent the 3.1 million Americans living with Inflammatory Bowel Disease (IBD) in Washington D.C. for IBD Day on the Hill with the Crohn’s and Colitis Foundation. The event places volunteers (doctors, patients, caregivers, parents, etc.) in meetings with their elected officials in hopes to advance legislation that will help patients and their families as they fight these chronic, incurable diseases.

My team, comprised of New Yorkers from various districts, visited Rep. Max Rose’s office during our meetings. I’m pleased to report that he is incredibly concerned with helping his constituents and is representing Staten Island and South Brooklyn with grace and honor.

While meeting with Rep. Rose’s legislative director (the Congressman was on the floor for votes at the time of our meeting) we outlined two bills which have bipartisan support and would help not only IBD patients, but Americans across the country.

The Safe Step Act (HR 2279) fights back against “step therapy” which is a practice that requires patients to fail on less expensive, insurer-preferred medication rather than more effective doctor-preferred therapies. This practice often results in disease progression and significantly worse outcomes for patients. The act ensures an accessible and timely appeals process by insurers. I almost lost my colon to active disease in 2010 at age 26, and if it wasn't for a quick approval of an expensive biologic therapy, I would likely be living with an ostomy today.

The other bill we discussed was the Medical Nutrition Equity Act (HR 2501) which would provide insurance coverage of medical foods for certain diagnoses when used as a therapy, which is a huge issue for pediatric patients with IBD. Families are paying approximately $800 a month out of pocket for these drinks that are being prescribed like medicine but not covered when consumed orally, and some patients are being subjected to unnecessary feeding tubes for insurance purposes.

I’m so incredibly excited to report that Rep. Rose’s staff listened with great concern, researched the issues and reported back that the Congressman signed on as co-sponsor of both bills. After asking, he also joined the Congressional Crohn’s and Colitis Caucus, a group of lawmakers who come together to support IBD medical research and to improve patient access to care. For someone who has lived for more than a decade with this "invisible illness" that is extremely embarrassing to talk about, awareness means a lot for IBD patients and is helpful in securing funding for research. 

My fellow New Yorkers commented on how fantastic the Congressman’s team was, and I couldn’t help to be impressed by the compassion and professionalism from his staff. Despite our negative citywide and nationwide reputation, I was incredibly proud to say I’m from Staten Island. It was heartwarming to see our democracy at work, at a time when 24-hour news networks are telling the country that government is broken.