Sunday, March 10, 2013

March on the Hill and the Volunteer Leadership Conference: Part 1

Wow. I don't even know where to start. I've been excited about the Cystic Fibrosis Foundation's March on the Hill and the Volunteer Leadership Conference for some time now, but these past 4 days blew expectations out of the water. I guess I will start from the beginning.

Last weekend, we loaded up the car and drove east to my parents house near Philadelphia. We were going to spend the beginning of the week there, before leaving the kids and heading down to Washington D.C. for two Cystic Fibrosis Foundation events, March on the Hill and the Volunteer Leadership Conference. March on the Hill isn't exactly what it sounds like. It is an advocacy push on Capitol Hill, where advocates try to meet with as many members of Congress as we can to share the policy agenda of the CFF and let them know how decisions that they make can negatively or positively affect us. There is no grand "march", but there are usually 50 or so advocates who hit the hill on the same day to discuss the same issues. ANYWAY, I was supposed to leave on Wednesday morning for some training on Wednesday afternoon and then meetings with members of Congress all day Thursday. Martin was supposed to take the train down Thursday evening to meet me for the Volunteer Leadership Conference (VLC) for the following two days before we headed back to PA to get the kids and then made our return trip to Cincinnati. Well, by some point on Tuesday, the weather forecasters were predicting a few inches of snow for the entire east coast, and by Wednesday morning that prediction was up to 16 inches. I was on the phone with the CFF several times early on Wednesday morning before I was supposed to leave, as Congress had gone on recess and the event was potentially not even going to happen. Around 9am the whole March on the Hill was called off and I was seriously bummed. As the day went on, and no snow ever came, I was more and more frustrated with having not been able to participate in this advocacy event that I've been waiting about a year to attend. We were just getting ready to sit down to dinner on Wednesday night when the phone rang and it was the CFF letting me know that everything was back on! In about 30 minutes, I got my things together, decided that Martin would just be coming along with me rather than taking the train down the next day, kissed the kids goodbye and was on my way to DC.

We got to our hotel, which was 3 blocks from the Capitol, around 9pm. After getting checked in, we got our clothes all out and ironed and everything ready to go for the morning because our meetings were starting at 7am. Wednesday morning, we met with fellow advocates and the Government Affairs team from the CFF and before we knew it we were on our way to Capitol Hill. Congress was still on recess, despite the fact that there was not one snowflake to be seen and the weather was 55 degrees and sunny, but the amazing team at the CFF was able to get us meetings scheduled with their staff.

Between 10am and 4pm, Martin and I met with 7 different congressional offices, including those of our very own Congressman, Rep. Brad Wenstrup and Speaker of the House John Boehner. In past years, the CFF has had an action item, or something that we were asking them to vote for or against. This year it was a little more vague, in that there was no specific bill that we were talking about, but rather the effect that the sequestration would have on patients with Cystic Fibrosis. Believe it or not, I am not very politically savvy, but I have taken the time to learn about things that would affect us. By "us", I mean the Cystic Fibrosis Community. I should learn more about everything that affects us as a family or as a community, but like I said, i'm just not that politically savvy, and I'm out of time. I digress. Back to the sequestration. Here's what it is in a nutshell (per
"The sequestration is a series of automatic, across the board cuts to government agencies, totaling $1.2 trillion over 10 years. The cuts would be split 50-50 between defense and domestic discretionary spending. It's all part of attempts to get a handle on the growth of the U.S. national debt, which exploded upward when the 2007 recession hit, and now stands at more than $16 trillion."
In the beginning of March, as in 10 days ago, the cuts started to happen, and one of them is an 8% cut in funding to the National Institute of Health. The NIH is the primary agency of the US government responsible for biomedical and health-related research. The NIH provides the CFF with grant money and funding for a lot of the research that they do, in combination with the money that we raise as fundraisers, and sponsors researches, like J.P. Clancy at Cincinnati Children's, with the work that they do as they search for a cure. An 8% cut in funding means that there both won't be as many grants provided and the grants that are given out will be funded at 10-20% less than they currently are. This could mean that studies that we want to happen could be delayed or frankly not have enough money to even happen. Additionally, if they did happen and if these studies showed great value in the drug, the road to drug approval could be delayed because jobs at the Food and Drug Administration would be cut to save money, leaving less people to review drugs and pass them through to approval. Imagine that your child had the G551D mutation, the one that Kalydeco works for. And you know that Kalydeco exists and could change your life, but there's not enough money to get it passed through the FDA for approval. Simply unacceptable. And this is just one example (at a high level) of how cuts to the NIH and FDA would have a negative effect on the CF community. We specifically asked that our elected officials provide the National Institutes of Health (NIH) with the funding needed to support essential research and promote and protect programs that help researchers translate exciting scientific discoveries into potential treatments, an expensive and complex process.

Another issue we were focused on was asking these Congresspeople to enable people with cystic fibrosis to access the care and treatment they need to live longer and healthier lives. With healthcare costs ever on the rise, we are beginning to see insurance companies deem some care centers "out of network". Our trips to the CF Clinic aren't like your average doctor appointment. Our appointments include a number of specialists - a pulmonologist, a gastroenterologist, a dietitian,  a respiratory therapist, an ENT, an endocrinologist, a social worker, and sometimes more. This "team approach" to care allows all of the specialists that need to see Drew to see him in the same setting at the same time and coordinate and collaborate on his care. This is not cheap, and insurance companies recognize it and are deeming it unnecessary. But in reality, if he gets denied coverage by insurance at an accredited care center and has to see all of these doctors elsewhere from specialists who aren't familiar with Cystic Fibrosis care, his health will suffer and he will end up needing more frequent and repetitive testing as well as many times unnecessary, and he will likely end up spending more time in the hospital, ultimately costing his insurance company a lot more in the long run. We are asking Congress to support access to quality health care that adheres to the current standards recommended by CF treatment and research experts and to help cystic fibrosis patients get the medical care they need by reducing the unmanageable cost-share burden of this disease.

Most of the offices that we met with seemed to agree with us on the importance of the NIH and told us that they are looking for solutions. I will definitely be following up to let them know how important this is to all of us in the CF community, and I ask that if you have a moment that you join us by doing the same. By clicking on this link, TELL CONGRESS: PROTECT OUR PROGRESS TOWARD A CURE FOR CF, your voice can be heard too, and the more they hear from people supporting the same cause and sharing the same message, the more likely they are to listen.

There ended up being only 15 of us "Marching on the Hill", but the excitement and power of this amazing group of people was energizing. I know I will be doing more, and I hope you will too!

This post is getting WAY longer than I had intended it, but hopefully it's because my passion is shining through. It is late and I am exhausted. I apologize for typos. I will try to continue with the second part of our trip, the Volunteer Leadership Conference, later this week, but as with the March on the Hill it totally exceeded expectations which started out high, and I want to share every little detail. This may end up being a 3 part post! Stay tuned!!

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