I initially set out to share my son’s story and write about how terrible the Better Care Reconciliation Act is, but then I realized that everyone has heard the sob stories – babies, kids, families, grandparents – who would be negatively impacted. If people have read those stories and it still hasn’t changed their minds, why would mine change theirs? Perhaps I should endeavor for a more unique angle.
So I want to share something far more interesting to me, and hopefully motivational to those of you facing a battle with the “big C.” Ever since my son Jude’s first cancer relapse at age two (he was diagnosed with Acute Lymphoblastic Leukemia at 18 months), my family has rallied around a quote from ESPN anchor Stuart Scott, who said “You beat cancer by how you live, why you live, and in the manner in which you live. So, live. Live. Fight like hell.”
As I reflected on last week’s healthcare debate, it struck me this is exactly what Senator John McCain did. He is living and he is beating cancer, despite a difficult prognosis. With his vote, he stood up for cancer families across the country – scared of what the future holds and whether they will be able to obtain or afford coverage.
He is standing for the children like my son Jude - almost 16,000 annually who receive a cancer diagnosis – not because they smoke, drink or have any lifestyle factors (despite what Alabama Representative Mo Brooks says), but simply because of bad luck.
As a “Momcologist,” I want to give him a huge high five and fist-bump for living. For standing by his ideals, fighting for bipartisanship and giving an “F*&% you” to President Trump, who dared mock him while on the campaign trail. I think we all know who the loser is, and it is not Senator McCain.
Senator McCain, thank you. Whatever the future holds, know that you have the support, love and admiration of fellow cancer fighters across this country. You are beating cancer.
(And while I’m talking about last week’s vote, I can’t overlook the courage and fierceness of Senators Susan Collins and Lisa Murkowski. Thank you for standing with females across the country on this bill that essentially made being a woman a pre-existing condition.)
This debate hits especially close to home because of my son, Jude. He just turned five and has beat Acute Lymphoblastic Leukemia four times. Yes, FOUR times battling cancer in his short life. He is alive today only because of treatments developed in the last decade and our outstanding team at Diamond Children’s.
I called our insurance company to get a count of how much his healthcare has cost and the representative stopped counting at $2 million in the first six months alone. That doesn’t include three more years of treatment, his two bone marrow transplants and three types of brand-new immunotherapy. We are privileged beyond belief that our insurance covered all this. I know other families who aren’t so lucky.
Suffice to say, Jude is totally screwed by the Better Care Reconciliation Act and the American Healthcare Act - lifetime caps, pre-existing conditions, higher costs. What keeps me awake at night is how he now faces a lifetime of health impairments from the chemotherapy drugs that saved his life (no, chemotherapy is not perfect, but he’s here because of it. If you think medical marijuana or essential oils would be better, please kindly go suck a rotten egg until you’ve walked in my shoes. You don’t want to walk in these shoes.).
If this legislation passes and Jude is lucky enough to survive to adulthood, I fear he will be denied coverage, unable to afford healthcare and suffer from otherwise treatable conditions after fighting an unthinkably tough battle before he even entered kindergarten.
That’s my healthcare story. While it is important to me, I know it is a cliché in the healthcare debate. Surely you’ve heard dozens of other stories by now too.
If Jude—a 5-year old four-time cancer warrior—doesn’t sway you, then who will?
But one thing I think we can agree on is that our Senator has shown cancer who is boss.
Barb Anderson is a local mother and “Momcologist” recently named The Leukemia & Lymphoma Society’s 2017 “Woman of the Year” after raising nearly $70,000 in the fight against cancer.