This past week, I went back to the state capitol here in Madison to advocate on behalf of CF patients. The advocacy day got started on Tuesday night with a dinner for the advocates. There were about 20 or so of us all told. I would say about half were people who were at the advocacy day last year, and about half were new faces, including a high school student who came of her own volition to advocate on behalf of one of her best friends, which was really inspiring. We advocates were divided into groups of 3 or 4 and then practiced our spiel for the next day. My group was awesome, it included the director of the adult CF center here, the executive director of the Wisconsin chapter of the CF Foundation, and a woman who is heavily involved in organizing advocacy efforts for the CF Foundation.On Wednesday morning, we met up near the capitol and then headed into our meetings. Our group met with three legislators this year: Senator Jen Shilling, who is the senate minority leader; a staff member from the office of Senator Scott Fitzgerald, who is the senate majority leader; and Representative Chris Taylor. With each legislator, we went through the basic stats on CF in Wisconsin: about 680 patients treated at 7 accredited CF centers across the state, with about $6M in funding for research and the care centers flowing from the CF Foundation into the state over the last 5 years. We also talked about how 38% of children and 20% of adults with CF in Wisconsin rely on Medicaid for access to healthcare.
This lead directly into our main policy ask, which is for Wisconsin to fully expand Medicaid to everyone earning up to 138% of the federal poverty level. Of course, this is a very partisan issue, so the two Democrats that we met with were 100% in favor of doing the expansion, whereas the Republican was not in favor of it (or at least said the caucus doesn't support it). We also asked for continued funding for the Wisconsin Chronic Disease Program, which is a payer of last resort for people with CF and other severe chronic diseases. Fortunately, this program is not considered partisan or controversial, so all the legislators we met with were in favor of keeping it going. The budget process in Wisconsin is going to be quite a mess this year, with the governor being a Democrat and both houses of the state legislator being controlled by Republicans, so it's good to know that at least funding for this one program should continue regardless of what happens with the rest of the budget.
Overall I think our group delivered a strong message, since we represented many different perspectives on CF, and my only real disappointment with the day is that we didn't have more meetings--we were done at about mid-day, and I would have been happy to stick around to do a few more (I think last year I did 5 or 6). We had a chance to sit in on a hearing on a bill about step therapy (basically the concept that an insurer can require a patient to try and fail a less expensive therapy before covering a more expensive one). A lot of other organizations were there giving testimony in support of the bill, which would help patients with chronic diseases to bypass the step process and access medications that will help them more quickly without having to "fail" at other therapies first. I felt like it was too bad that our advocacy day wasn't organized to give us an opportunity to testify at the hearing, especially because the doctor who is the head of the adult CF program had just been telling us at dinner how this is an issue that affects more and more of his patients. So, although overall I felt like our advocacy day was a success, we could easily have done more and I'm hopeful that next year will be even more impactful.
Thank you so much to everyone who has already donated to our Great Strides team so far this year--we are truly humbled by your generosity. We are about half way to our team goal of $7500. If you have been meaning to donate but haven't yet, just head on over to our fundraising page and make a quick donation. Every dollar helps ensure more tomorrows for Lemon and everyone else with CF. Let's make it stand for "Cure Found."