25 March 2015

Advocating on Capitol Hill for Bennett

This past week, I traveled with all three kids to DC to advocate on Capitol Hill for Bennett and all those with Cystic Fibrosis  (Brian had to stay back to work).  This year, I took Oliver to advocate with me.

This was my third year to participate in the Cystic Fibrosis Foundation's annual "March on the Hill" day in Washington DC.  It is a special day where the CF Foundation arranges meetings with Congressmen and their staff so CF caregivers, friends and family can communicate our need for a cure.  

Those with Cystic Fibrosis are not allowed to come to CF events such as this one, due to infection control issues.  The CF Foundation recommends that no two people with CF be within 6 feet of each other as they can inadvertently get each other sick.  So, while Bennett couldn't be there.  Oliver was there for him instead.  (My mom watched Avonlea and Bennett for the day.)

After a morning of training, more than 100 CF advocates emerged on Capitol Hill to speak on behalf of those with the disease.  One of my first appointments was with Congressman Barton (who happens to share a birthday with me - random!).  I attended this meeting alongside the Northeast Chapter of the CF Foundation's Executive Director, Amy, and Debbie, also from Dallas, whose sister died from CF in 1979.

I just had to mention this sweet lady, Krista (in red), Congressman Barton's Counsel and Legislative Director because she was absolutely fantastic.  She knew so much about CF before we ever came, because she studied up on it.  To my surprise, Krista had already found Bennett's video and was incredibly up to date with the newest information about CF as she had recently attended a meeting put on by the CF Foundation for Congressmen and their staff.  Krista was such a delight to meet, making our first Congressional meeting a really great one!  

As CF advocates, we had several requests when we met with the Congressmen and their staff.  First, we asked them to support the EACT (Ensuring Access to Clinical Trials) which makes permanent that those with rare diseases who participate in clinical trials not have to count as income up to $2,000 in compensation which they receive for participating in those clinical trial.  Doing so has previously jeopardized the health insurance and social security disability benefits of those with rare diseases like Cystic Fibrosis.

This is particularly important issue for those with CF as 1 out of every 2 children with CF and 1 out of every 3 adults with CF are on Medicaid and/or Social Security Disability.  It would be very sad if patients had to face the choice of participating in clinical trials, which helps the entire CF community, OR losing their health insurance because they made too much money due to clinical trial compensation.

Cystic Fibrosis is an orphan disease.  That means the number of CF patients in the US is small. Those who qualify for clinical trials for CF drugs is even smaller.  I'd hate to see that even fewer patients would be available to help us test a cure.

The good thing is the EACT has been the law for the last few years but it had a "sunset" clause on it, which meant it expired at some point.  Now, there is an effort to make EACT in to a law permanently.  It's a bipartisan effort and hopefully should pass.

On our second visit of the day, our team met with  Congressman Pete Sessions.  Congressman Sessions was very playful and seemed to really enjoy having Oliver in his office (as seen by the picture above).  Sessions shared he is also a caregiver of a child with special needs as he has a son with Down Syndrome.  It was nice to be able to see Congressman Sessions as a father and caregiver, just as I hope he saw us as desperate parents wanting to make way for a cure.

Outside of asking for the Congressmen to support the EACT, we asked for robust funding for the National Institutes of Health (NIH) and FDA.  Both government departments are crucial to the Cystic Fibrosis Foundation's research for a cure.  The CF Foundation uses basic human research, supported by the NIH, to build upon our own research.  Once a medication is found, the CF Foundation works diligently and swiftly with the FDA to get the drug to market as fast as possible.  The CF Community raises it's own money for a cure but uses help from the NIH and FDA to help expedite a cure.

Another Congressman that we had the privilege to meet was Congressman Bill Flores.  I have met with Congressman Flores for the past 3 years and greatly appreciate his sincerity every time.  Oliver and I are constituents of Congressman Flores and really enjoy having created a positive relationship over the years.  Texas has around 1,744 CF patients and 16 CF Care Centers.  Scott and White, one of Bennett's hospitals, is in Congressman Flores' district.  

We enjoyed meeting with all of the Congressman.  But, Oliver's favorite Congressman is the one best known to him as "Pops."

Congressman Fleming was actually on his way to votes after our meeting with him so he invited his grandson to help him vote on the House floor - something only children get to do. I had to watch from the Gallery.  But here is where Oliver did the most for CF on Capitol Hill and didn't even realize it:

On the floor of the US House of Representatives, Oliver helped his "Pops" vote.  But, between votes, different Congressmen, delighted to see a child on the House floor, came up and spoke with him.  I watched from the Gallery as he shook hands with men and women who represented states near and far.

I knew Oliver wasn't exactly able to capture in his little mind what a cool thing he was getting to do. But I was soaking it up for him, watching from above.  I watched my little first grader speaking with the adults, sitting there in his little khaki's and button up shirt, looking around, listening to the sounds of the gavel being hit and watching the lights brighten up as votes were cast.

At one point, Oliver seemed to unknowingly catch the attention of Congresswoman Debbie Wasserman-Schultz.  This is most interesting because it seems that often the Republican Representatives and the Democratic Representatives tend to mingle together in their respective parties on the House floor during votes.  But Congressman Wasserman-Schultz is a Democrat.  Congressman Fleming is a Republican.

I watched as Congresswoman Wasserman-Schultz came over and began speaking to Oliver, who was standing beside his grandfather.  She struck up a conversation with Oliver and then with Congressman Fleming, who at some point mentioned to Congresswoman Wasserman-Schultz that Oliver was doing something important at the Capitol today - he was advocating on behalf of his little brother, who has Cystic Fibrosis.

I could see there was some sort of agreement going on between the three of them.  But I couldn't tell what.  Later, I learned that during that conversation, Wasserman-Schultz shared with Oliver and Congressman Fleming that she knew what Cystic Fibrosis was.  In fact, she revealed, she has an extended family member with the disease.  And to my surprise, she then turned to Congressman Fleming and said, "Look, I'd love to help.  I'm on Appropriations [Committee].  So, call upon me for any help."

What a powerful moment for me, as a mother, to see my son, on the floor of the US House of Representatives, connecting two legislators who came together, across party lines, in support of those with Cystic Fibrosis.  Oliver had done it.  He had gone to Washington DC, advocated for his brother, and walked away with another fighter, US Congresswoman, in our corner.  I couldn't have been more proud of him.  

Oliver's treat for such a great job: Ice Cream at the US Capitol's Creamery!

I wanted to make sure that I mentioned my friend and fellow CF mom, Rebecca, who became the CF Foundation's newest National Advocacy Chair.  Rebecca and I first new each other only via Facebook through the "CF Mamas" Facebook group.  Now we are real life friends.  It's pretty neat.  I am very proud of having Rebecca in this place.  One of my favorite things Rebecca said during the event was, "CF Advocacy is not political.  It's personal."  This is so true.

At the end of March On The Hill, the CF Foundation invited my dad, Congressman Fleming, to speak to all of the 100+ CF advocates that joined March On The Hill for a dinner.  Senator Markey (not pictured) also spoke.  After dinner, the CF advocates who represented their family members and friends on Capitol Hill shared their stories of the day.  It is always so amazing to hear how receptive our legislators are to our message:  "We are close to a cure.  Help us make that happen faster!"

I am thankful for a father who is not only supportive of his little grandson's daily fight against CF but who is a champion in the United States House of Representatives for all those with Cystic Fibrosis!

And I am thankful for a little 7 year old who advocates for his little brother, not just each day at school and at home, but also in our nations' Capitol.


  1. "as a mother, to see my son, on the floor of the US House of Representatives, connecting two legislators who came together, across party lines, in support of those with Cystic Fibrosis. Oliver had done it."

    Here's where I lost it and began sobbing. What an amazing brother. I have been following your blog for 2 weeks now from a co-worker's wife. I have read almost every post. I, too, am a mother of a son with CF. I have been grieving for 18 months, but I finally realize being sad isn't going to do anything. Seeing you participate in the CFF medical records/payment event and March to the White House is such an inspiration. Thank you for advocating for us. I need to get involved too; I live in DC, I have no excuse!

  2. What a cool experience for Oliver!! I have a feeling this won't be his last time in D.C...and I'm so proud of his ability to speak up in front of adults. I teared up as you shared how he advocated for his brother. What a special, special day for both you and him. Thanks for sharing!


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