Advocacy & Public Policy

It’s been an important year for advocacy and we are grateful to our dedicated volunteers who have represented us at three important events to make sure those with cystic fibrosis are considered in future legislation. Below is a summary of these events:

We kicked off the year on January 30th with our 3rd annual NY State Advocacy Day in Albany, NY. 22 advocates from the state (14 from the Greater NY Chapter) attended 35 meetings. These advocates shared personal stories with the legislators and asked them to keep the needs of the cystic fibrosis community in mind when making health policy decisions. In particular, they asked legislators to support Governor Andrew Cuomo's proposed executive budget, which fully funds the Adult program, as well as adequate funding for the Children with Special Health Care Needs Program and Medicaid.

On March 2nd, Kate Niehaus, Melissa Shiffman and Matt Genova represented the Greater NY Chapter at the 11th annual March on the Hill. They joined 100 advocates from 43 states and met with nearly 300 elected officials or their staff to help ensure that everyone with cystic fibrosis has access to high-quality, specialized care and adequate, affordable health care. They asked their representatives to support protections in current health care law that are critical to people with CF and their families.

The 9th annual Teen Advocacy Day (TAD) held on June 21 and June 22 proved tremendously successful. Surpassing last year’s numbers, 80 teens from 38 states across the country stormed Capitol Hill to advocate for friends and loved ones with CF. CFF teen advocates held over 275 meetings with members of the Senate, House of Representatives, and their staff. They shared stories of how CF impacts the lives of their loved ones. The teens also asked their senators to join the newly formed Senate CF Caucus to raise awareness, support research, and advance policies that help people with cystic fibrosis live longer, healthier lives. New York State was represented by Julianna Brogan, Max Genova and Stephanie Ross from Long Island; and, Melissa Shiffman, our National Advocacy Co-Chair, from Manhattan. Between them, they participated in 12 meetings!

Below is a personal story from GNY Board Member, Matt Genova, who attended this year’s Teen Advocacy Day with his son, Max Genova, for the second time:

I’ve come to learn that TAD is a powerful experience for our future generation. Advocating is the definitive way to have one’s voice heard. It doesn’t happen in the public theatre which everyone sees but rather in an intimate setting with an elected official where you look to create that emotional connection that leads to action. What an opportunity – and responsibility for me! But let’s be real, what an incredible experience for our future generation. It’s the way to step out of comfort zones that many of our teens realized was insulating them from the world around them. It’s the way for our teens to experience life in the professional world inclusive of probing, creativity, collaboration, preparation, presentation (or storytelling which I prefer saying) and public speaking. And most importantly, it’s the way to take a topic that is so near and dear to their hearts and have people touch it and feel it with you.

My son, Jake, was diagnosed with CF when he was three. In keeping with a strict and disciplined regimen his health is relatively good. He’s now eighteen and will be attending the Florida Institute of Technology in the fall. His younger They are alums, as both were part of TAD 2016. But don’t let that fool you. By the look of their faces on the Amtrak heading to DC from NYC it was like the first time all over again.

The agenda started with a training session. For the first time, you see all of teens starting to gear up for the next day. Everyone is armed with the messaging and best practices for delivering those messages. It’s at this time the kids realize that they’re part of a giant support group. It’s also at this time that the wheels start turning and the strategy begins to form. After speaking with others at their table they leave the room with the framework of their story.

At dinner later that night, you can feel the electricity in the air. It’s a time to compare notes and listen to the various speakers. As time passed, the entire room was fired up and ready to take action. It’s time to finalize the story, assign roles and practice. The kids did so as the adults convened in another room to talk “strategy”.

Game time. The hallowed halls of Capitol Hill. We had four meetings scheduled including one with Senator Schumer’s office! Max and Julianna knew they needed to be on point and efficient to land their message. They had to be prepared for a 30-minute meeting or 2-minute meeting. They decided on three topics:

First, a “Day in the Life of Jake Genova.” With visual support, they demonstrated the regimen Jake follows, detailing the breadth of equipment, medications and pills throughout the day. The end of this section was a picture of those pills, with the individual Creon pills in a pile. No matter who we spoke to, this visual caused everyone to sit back in their seats, speechless.

Second was “The Pipeline”. The Drug Development Pipeline shows the progress to date for each CF therapy. No matter who we spoke to, this visual caused everyone to sit up and lean in. They knew at that point how close we are to finding the cure.

Finally, the ask. Strategically, the kids had them. How could they not listen to what they wanted? Personally, this is probably the toughest part of the story for the kids to deliver because these were the specific topics that their audience was aware of. JP and I advised them that this is an opportunity to allow our elected officials to speak or even make a commitment to support it. It was simple then. The Republican’s AHCA…pause for feedback. Adequate, Affordable, Accessible Healthcare…pause for feedback. NIH and FDA funding…pause for feedback. All of this feedback was duly noted for follow-ups.

It was a great day. Max and Julianna were proud of their accomplishment. They stepped out of their comfort zones in a major way. They learned how to be successful with skills that will benefit them a lifetime. And another great thing learned was that those people on Capitol Hill… they work for us! We celebrated with the entire team that night. Stories were shared – the good, the bad and the ugly. There were also plenty of laughs. As a CF-Dad, I was proud of everyone in that room, appreciative too. I was proud of Max and Julianna. And the best part? They were proud of themselves too!