Week 234: Talking points

Tomorrow is Wisconsin's CF advocacy day at our state capitol. I've just gotten back from a dinner and training session with the other people who will be advocating with me tomorrow. There was one other CF parent (who bought me a much-needed Manhattan at the bar before the dinner started), a CF grandparent, and someone with a close family friend with CF. Also, to my surprise, pretty much the entire care team from our CF center was there--the nurses, the dietitian, our nurse-practicioner, the center director, and the social worker. And, on top of that, the staff from the adult CF center in Madison as well. So the provider-to-family-member ratio was pretty outrageous. There were also a couple of representatives from the advocacy team at the national CF Foundation office in Bethesda, MD, and a couple of local consultants that the CF Foundation hired to help them navigate the Wisconsin state legislature. 

Here's the deal. Tomorrow, we'll be headed to the state capitol for a series of meetings with legislators. I have 5 meetings, pretty much back-to-back for the whole morning, including meetings with both my state representative and state senator. The meetings are all in groups, so I'll be joined by various members of the group, including some of the people who help take care of Lemon.

We spent a good portion of tonight's dinner going over our talking points for tomorrow. Some of these meetings will likely be pretty brief, because the Wisconsin state legislature is trying to wrap up all its business in the next several weeks before they go into recess until next year. So, we may not have a lot of time to get our message across. As in, we might get say 5 minutes, while walking. Or we might get 30 minutes with a staffer. The big challenge will be to address talking point number 3 on our list: tell your personal story. How to convey how CF has impacted our lives, in maybe 2.5 minutes. I'm doing some practicing tonight. And also watching figure skating. 

In terms of legislative talking points, we have two main ones. The first is to thank our legislators for funding the Wisconsin Chronic Disease Program and Badgercare (Medicaid), which support more than 30% of people in Wisconsin with CF. The second talking point is to request an amendment to Assembly Bill 365, which is supposed to protect people with pre-existing conditions in Wisconsin. However, it only does so for people who have no gaps in their health insurance coverage. If you have a gap, under this bill, you might be at risk for higher premiums or cost-sharing provisions. It's a lot of information to spit out in a potentially short amount of time, so we will need to be on the ball.

In other CF news, just this afternoon the FDA approved Vertex's latest CF medicine, which will be sold under the name Symdeko. It treats the root cause of CF in patients who have either two copies of the F508del mutation (the most common CF mutation), or one copy of the F508del mutation and one copy of a list of about 20 mutations that were shown to be responsive to the medicine. Sadly, Lemon's mutation isn't on the list (although, as I scientist I feel like he should be on the list, since his mutation is genetically similar to several of the mutations that are on the list). In any case, this is tremendously good news for the CF community as a whole, and is evidence of the work that has been done with all of your generous donations to the CF Foundation. Even more importantly for our family, Vertex also announced recently that it has selected two more new CF medicines that it will advance to Phase III clinical trials--and these ones are the real deal for us--the medicines that will treat the underlying cause of CF for Lemon. We are waiting with baited breath for the results of those trials, given how good the Phase II results were. 

In the mean time, I will focus on the matter at hand--advocating to make sure that as these wonderful medicines become available, people with CF have the ability to access them! If you use "the Twitter" (yes, this is how it was described at tonight's meeting), follow the hashtag #CFAdvocacy tomorrow to see what we're up to at the state capitol--goofy photos with state legislators and all!