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
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
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
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
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
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.