Erik Westlund in Medium wrote a stunningly good piece on being a parent of a child with hemophilia in Iowa. He made five points that I want to highlight.
- How is this not a HIPAA violation by the insurer? The disease is rare enough that adding demographic and severity information allows for rapid narrowing down of who Wellmark may be referring to.
- Better products for very narrowly focused disease groups will be expensive. It’s worth it if the care is better
- Co-pay assistance programs by drug makers circumvent cost control efforts
- Big pools are needed for catastrophic care
- Even straightforward cases are expensive
The key chunk is here:
Nowadays, the standard of care for hemophilia patients is to “prophylax”, or in common parlance, “do prophy,” from a young age. You get an IV shot two or three times a week to prevent bleeds before they start. Improved treatment products and regimens have made hemophilia a more livable disease. Life spans are now similar to those without the disease and daily life for a kid with hemophilia often differs little from those unaffected.
This comes with a cost, however: factor drugs are expensive. Very, very expensive. My guess it that my son’s treatment costs somewhere between $100,000 and $200,000 a year. My son, however, is lucky. So far he hasn’t had an inhibitor, which is when the body reacts to factor treatment with an antibody. About 20% of hemophiliacs have inhibitors. Patients with inhibitors need a lot more factor, more frequently. The costs can add up fast.
I found this post from a patient/caregiver point of view to be stunning, humanizing and well worth the three times I read it.