Finn Bullers, a former Kansas City Star reporter with a rare form of muscular dystrophy, became the face of the opposition to KanCare, Kansas’ privitized Medicaid plan. Faced with losing much of his 24/7 care, Bullers told lawmakers, media and anyone who’d listen of how death was just a mishap away.
“I hate to sound that dramatic,but if this tube comes off I’ve got two minutes tops — and then I die,” he said.
The state defended the reduction in care for Bullers and hundreds of other Kansans: “I’ve reviewed his case, four other people in my agency have reviewed his case, we are comfortable with the proposed reduction in hours,” department of aging secretary Shawn Sullivan said) but Bullers continued to fight.
It all paid off Christmas Eve, when UnitedHealthcare, Bullers’ provider, reversed course and reinstated his 24/7 care.
Bullers put it this way in a statement:
The sun had never shined brighter.
Why had United reversed course? We’re a big organization where change moves slowly, my case manager told me just before Christmas.
This is all new to us. We’ve learned a lot this past year, she said of her employer’s roll out of for-profit care in Kansas. We’ve learned that each case is unique and health care is not one size fits all, she said.
What a Grand Canyon sigh of relief.
Bullers said “for-profit care providers are now on notice that there is a growing voice of opposition that won’t tolerate unbridled profiteering at the expense of quality caregiving.”
The former reporter said he’s learned important lessons as he became an advocate and voice of those who need health care:
This year has been consumed with our ongoing advocacy efforts to right a wrong. It has taught me to fight the good fight, stand on principle and speak truth to power. These are the lessons I built a journalism career upon for three decades to help afflict the comforted and comfort the afflicted — but never needed as my own personal First-Aid kit.
Lessons learned: Stand up. One voice can make a difference. You can fight city hall. And the state capitol. And yes, even Congress, I was reminded. And if you don’t stand up, you get the government you deserve. …
Self advocacy starts with a germinating seed in fertile ground that slowly grows into a towering Oak — one dark thunderstorm following one bright, glorious day of sunlight, the greatest disinfectant for all toxic public policy.
PHOTO CREDIT: JIM MCLEAN/KHI