You’ve seen them. I’ve seen them. Around Labor Day especially. Firefighters standing on the street corners of America with firefighters’ boots collecting money for Jerry’s kids, kids who have muscular dystrophy. What we often don’t see or hear are the stories behind some of those street-corner firefighter-fundraisers.
I heard one this week that still has me shaking my head. And while I know many people think the patient stories don’t matter any more and that the horror stories cannot change the reality, I still believe it is the inhumanity of it all that will ultimately push us to create a system in which firefighters will not stand on street corners collecting money for research foundations while they cannot even access the healthcare their own families need.
While flying through Salt Lake City this week, I sat next to a firefighter’s wife. She is a teacher. They live in Utah where they are the parents of six children. Michelle’s firefighter-husband works four jobs in order to support his family. She was on her way to help her daughter who has a six-month-old baby pack up her apartment to go to Okinawa, Japan with her U.S. military member son-in-law. This is a remarkable family giving their all to one another, to their community and to their nation.
But there is one way in which this terrific family is not remarkable. They cannot afford the care their son with muscular dystrophy needs – even though they pay hundreds every month for healthcare coverage.
The boy with MD needs a genetic test that costs $22,000. Insurance won’t pay it because they do not cover it for his more rare type of MD. If he has the test, he may be able to qualify to be a part of some clinical drug trials that could make his life much better. Those trials would be free-of-charge to the family, in part because of funding from the Muscular Dystrophy Association so elevated by the Jerry Lewis annual telethon and the efforts of firefighters. But, no matter. Unless the boy has the $22,000 test, he cannot be included.
Imagine the adults in this family working four or five jobs, purchasing insurance coverage and still not being able to afford the care needed.
Imagine a firefighter standing on the street corner – as this Utah dad does – raising money for MDA, Jerry’s kids, yet unable to secure the care his own son needs.
Imagine the system that does this to the firefighter and a teacher who are parents of a military service member.
Yet, nothing in the new health insurance reform legislation passed in Congress this year changes this reality for this family. The insurance companies made sure they’d not have to cover the firefighter’s kid with a rare form of MD. And if the legislation is repealed, the firefighter’s kid is still out of luck.
The truth is that until we decide together that providing a single standard of high quality care for all including firefighters’ kids and all of Jerry’s kids we will continue to leave heroes in the street holding boots out to collect dollars that they can never use to help heal their own babies. Shameful stuff here.
And of all the things I learned on that short flight about Michelle, the firefighters’ wife, it is that no one should heap shame on this family, and certainly not because they aren’t contributing to making this nation better. As I watched her eyes and heard her repeat the figure -- $22,000 -- I couldn’t help but think how little that really is when a 14-year-old’s quality of life is at stake.
Michelle was born in Canada. She knows that things could be different. She knows that providing healthcare to your citizens as Canada does is not throwing democracy out the window. She a teacher, and she’s smarter than that. She had no problem saying that an improved Medicare for all system would not only be good for her son but also for her firefighter husband – the fellow working four jobs to keep the ship afloat.
Apparently, we haven’t yet had enough of these kinds of tragedies to force us to stand up together – shoulder-to-shoulder – and say we want healthcare for all. The firefighter’s son and our own kids deserve no less. Onward.