Crowe: Advocacy, a team sport
There are a number of West Texans who have expressed their feelings that the State Legislature doesn't represent them. Having watched a bill move through two sessions and head to Gov. Abbott's desk with overwhelming support last month, I can tell you that is not the case, but you have to put in some work.
Some background. I am an adult with Hemophilia, a genetic disorder that keeps my blood from clotting properly. Treatment of Hemophilia requires incredibly expensive medication that runs into the tens of thousands of dollars per dose, and some patients require multiple doses per week.
Because of this and because of the effect treatment has had on my livelihood, I became a champion of personal healthcare rights as a young adult. Through that work I am a member of the Texas Bleeding Disorders Coalition, an ad hoc group of patients and community leaders from across the state that came together to advocate during the biennial legislative sessions in Austin in the early 2000s.
Going back to the expense of the medication, many drug manufacturers offer supplemental assistance programs to offset the cost of our clotting factor. Those programs have meant the difference between medicine or food for some in our community.
In 2019, thousands of Texans started to see changes to their health insurance, with the addition of “copay accumulators” written into their policies. Those accumulators required that copays must come from the patients directly, even if assistance programs were still accepted, leaving none of the money to benefit the patient it was intended for.
Thanks to the help of many West Texas legislators, that changed. Rep. Four Price, R-Amarillo, introduced legislation in 2021 to eliminate those accumulators. His bill gained a co-sponsor across the Capitol — Sen. Charles Perry, R-Lubbock. While it did not advance two years ago, when filing opened for this legislative session in December, Rep. Price was quick to refile.
As my wife has joked, I have burned a hole in the road between our home in Floydada and Austin this session, traveling down multiple times to walk the halls and meet with staffers. I was given the opportunity to testify to both the house and senate committees handling the bill. Most importantly I was afforded time to tell our story, my story, to Sen. Perry and Rep. Dustin Burrows, R-Lubbock, and the men and women in their offices. As any West Texan will tell you, building relationships is key to getting your voice heard.
Ryan Crowe is the director of the Floydada Economic Development Corporation and an advocate with the Texas Bleeding Disorders Coalition.
This article originally appeared on Lubbock Avalanche-Journal: Crowe: Advocacy, a team sport
