The Colon-less Advocate

CCMC visits Capitol Hill

The first of the month brought another great trip to Washington D.C. for the Digestive Disease National Coalition’s annual Public Policy Forum & Day on the Hill. I have to say that it isn’t the easiest thing for me to just get up and go away for a few days to extremely cold weather with no parental partner in Los Angeles. But I know that it has to be done. I am better off than other patients and I have to speak up for them. I have to speak up for myself. And I have to speak up for Hippo. Whatever happens to me as a patient; positively or negatively; happens to my child. So, I make the trek to speak with Representatives and legislative aides to push for bills that will help patients live a better quality of life and in some cases, catch the issue before it turns deadly.

10653525_927806080604915_3228748189898750357_nNow last year, we had a very hard time getting through to our representatives because, well, the snow wouldn’t let us! Last year we were caught in that Snow-mageddon and the government was shut down. This year, we were blessed with a lightly snowed day and all Representatives & Aides in their offices ready to greet us. I was excited about this year’s legislative goals because there are a few new important bills that have come up for potential congressional sponsorship. Senators & Congresspeople are often eager to hear these, because it’s an opportunity for them to Sponsor or Co-Sponsor a bill that is very important to their constituents and can often lead to re-election. I was the most excited about our meeting with the LA in Senator Reid’s office, because the Senate Minority Leader is a great proponent of Crohn’s & Colitis related legislation. He pushed for things like the Crohn’s & Colitis Awareness Week, The Inflammatory Bowel Disease Act & the IBD Research and Awareness11034246_927818477270342_7113558933944223580_n Act. But Senator Reid could not have done it alone. It took patients with stories like mine to give him the fuel and information to convince Congress that our disease needs a national spotlight and government support. With all the hoopla surrounding Prime Minister Netanyahu; who was visiting & addressing Congress that Monday & Tuesday we were on Capitol Hill; and with his recent surgical recovery, my group was unable to meet Senator Reid this trip. However, the best way to address your asks, are with the people who bring specific legislation to the representatives attention, their LA: Legislative Aide. We were able to meet with his, and she was great! A great reflection of the Senator’s office and his pursuit of a healthy America.

CrazyCreoleLobbyingMommyWe were given a list of legislative goals by the DDNC and of those we each chose one that spoke to our heart. Being a mother with IBD, I picked the ones that would mostly effect me, my child and my readers. Below are the “asks” I gave to each representative I met with. You can reach out to your US Senators and your local congressman’s office and share these or visit the legislative goals page on and pick a few that speak to you to share with your representative. This can be done through email, written letter and/or telephone. Make the first call and then follow up to see where the Representative stands and to make sure you are heard. Advocacy is not a sprint, it’s a marathon. We keep going until a change is made. Here is a list of my “asks” to get you started:


  • Funding for the National Institutes of Health (NIH) at a level of $32 billion for FY 16. NIH Biomedical activities include the following of importance to the digestive disease community: chronic constipation, hepatitis B, inflammatory bowel disease focal gastric cancer gastrointestinal cancer, pancreatic cancer, liver cancer, behavioral research and cancer, National Pediatric Research Network Act
  • Reintroduction of the National Pediatric Research Network Act. The bill authorizes the National Institutes of Health to carry out the Pediatric Research Initiative, to act through the Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development to provide for the establishment of a National Pediatric Research Network.
  • Expansion of NIH’s efforts to study functional gastrointestinal and motility disorders, including introduction of the Functional GI and Motility Disorders (FGIMD) Research Enhancement Act, which seeks to advance scientific understanding of FGIMDs and improve treatment options for patients by encouraging and bolstering research; implementation of NIDDK’s strategic plan; and, implementation of recommendations from NIH’s State-of-the-Science Conference on the prevention of fecal and urinary incontinence in adults.

Patient Care:

  • The Medicare Home Infusion Therapy Coverage Act. This bill provides for Medicare coverage of home infusion therapy and home infusion drugs. It directs the Secretary of Health and Human Services to implement the Medicare home infusion therapy benefit in a manner that ensures that Medicare beneficiaries have timely and appropriate access to infusion therapy in their homes.*So important for those single parents on chemotherapy or biologics, who may have to miss a treatment because a child is home from school or cannot get a ride to infusion center*
  • The Patients’ Access to Treatments Act. This bill limits cost-sharing requirements applicable to medications in a private insurance specialty drug tier to the dollar amount applicable to drugs in a non-preferred brand drug tier.

Prevention & Public Awareness:

  • $7.8 billion for the Centers for Disease Control and Prevention (CDC).

–  $44.6 million for CDC’s Colorectal Cancer program in FY 16

–  $62.82 million for CDC’s Division of Viral Hepatitis in FY 16

–  Funding for CDC’s Inflammatory Bowel Disease Epidemiology Program in FY 16

The DDNC recommends continued funding at the level of $686,000. An estimated 1-to-2 million people in the United States live with IBD. There is a need for more detailed epidemiological research on this disease in the US.

  • Membership in the Crohn’s and Colitis Caucus

The Crohn’s and Colitis Caucus serves as an informal group of Members of Congress dedicated to educating the American public and other Members on awareness of Crohn’s disease and ulcerative colitis, collectively known as Inflammatory Bowel Disease (IBD). *Urge your local congressmen to join. especially in states like California, Ohio, Arizona & New Jersey where there a lot of local advocates, large chapters of the CCFA and/or large GI/IBD medical facilities.


There is one bill that I am very passionate about because I believe it could really help a lot of patients eliminate unnecessary, expensive  medications & supplements by using medical foods that target & heal specific medical problems. The Medical Foods Equity Act that was originally introduced 2 years ago in the house. It is not looking for a sponsor to get reintroduced on the floor. Please read up on it and introduce it to your representative.


IMG_3213I absolutely enjoyed my time in DC again hearing amazing inspirational stories by different patients and advocates. Finally getting to meet Ryan The Crohn’s Guy, who I feel like I know from sharing stories and talking through twitter all the time. Even though it is a bit of a physical struggle to travel, it’s such an emotional warm hug to be around all of these people I am inspired by and can relate to. Being the only one in the house disabled, taking monthly infusions andIMG_3242 damn near living in the hospital can be…isolating. It’s a very lonely existence. I thoroughly suggest spending time around people who also have a chronic illness that you can share stories with and draw inspiration from. It’s important. I always feel full and re-energized in an emotional way every time I take the time to advocate for myself or meet up with other chronic patients.

If you have any questions about advocacy, the DDNC or CCFA, please don’t hesitate to reach out! You should come out and join me next time! Seriously! Let’s go! I promise not to get you lost in the snow!!