(Barb LaVigne, at 64 years old, on Trestle-Pine Lake. Grand Marais, Minnesota. 2024)
Any parent that has had a child with a serious illness knows the grief, shock, helplessness, rage, and terror of thinking you’re not going to be able to take your next breath, let alone make it through the next week. Expectations for the future evaporate.
In the United States, the very real fear of financial ruin adds a cherry on top. Illness fractures lives without regard to geography, employment, or finances.
At age 15, the oldest of my two children, Marybeth, was diagnosed with Crohn’s disease.
Deep breath.
The doctor prescribed Prednisone but the side effects were unbearable for her. Over the years, she tried several other drug protocols without success. At 18 years old, her hemoglobin had dipped to dangerous levels and Crohn’s-induced arthritis kept her in constant pain.
A week before she was scheduled to leave for college, her doctor suggested Remicade (Infliximab) and it worked like magic. Marybeth received infusions of Remicade every eight weeks for years, that is, until it stopped working. Then, it was on to the dance of new drugs and getting Commercial Health Insurance approval. One drug seems promising, but Commercial Health Insurance will not pay for the increase in frequency that the doctor recommends. Each bimonthly dose costs nearly half her yearly income.
She moved and changed jobs a year ago. Her number one concern among all the details related to big life decisions as a young person was securing and maintaining health insurance. I worry every day about what will happen to her ability to pay for medical care and about the decisions she will be forced to make based upon her illness rather than her abilities.
Painful as it’s been for all of us financially and emotionally, I feel lucky. Not all families are.
In 2017, the CEO of Blue Cross Blue Shield, my Commercial Health Insurance company, was paid $10.9 million in total compensation. How are we to reconcile the overwhelming number of medical debt bankruptcies with those astonishing profits? I try to convince myself that those people who continue to reward Commercial Health Insurance industry companies and pharmaceutical companies for valuing obscene profits over people must never have had a seriously sick child.
No one could be that cruel, I tell myself. And yet, even on my most taxing days, as a loving parent, I hope that the children of those people are healthy, too.
Deep breath.