By Dr. Larry Chiaramonte
In the South Bronx I just saw an active 11-year-old girl disfigured by flaming, weeping, itching skin on 70 % of her face and body. When you see a case like this, you really appreciate the original meaning of the word “eczema,” which is derived from the Greek word meaning “to boil over.” Poor thing, her skin was boiling over. Her allergic inflammation was being fed by interleukin-4, which has a positive feed-back loop. In other words IL-4 is causing the skin to boil, which in turn causes more IL-4 to be produced.
This girl would be a perfect candidate for the new drug DUPIXENT (dupilumab), which has just been approved for eczema. The drug is administered by injection twice a month. Patients can do it at home. It is an IL-4 receptor agonist, which blocks the IL-4 from completing its part of the mission. However, as this website has observed, it has a list price of $37,000 per year. But that’s not the immediate problem. She is 11—short of the 12 years the age that the FDA begins its approve for use.
As I was trying to explain this to the mother, she took out her cell phone, “I want you to see these pictures of my family. See my daughter hiding behind me. She did not want anyone to see her face. She cannot have this new medicine?”
This case exposes some of the terrible conflicts in our medical system. There are reasons to approve new drugs according to age. Children are not just miniature adults. But still, the age of 11 versus 12 does seem terribly arbitrary, especially when a child’s whole life has been disrupted and diminished. Still, rules are rules, and no third-party payer is going to bend them.
Then there is the mega issue of who the payer is. If it’s Medicaid, which constitutes the lion’s share of the South Bronx population, we are eventually going to collide with one of the biggest public health dilemmas of our age. Will Medicaid spring for biologic drugs this expensive forever, even if the ACA is revived? At $37,000 per annum, the cost is just below the median household income for the Borough of The Bronx, which includes many higher income households in neighborhood such as Riverdale. I suppose this girl can survive another year on a rotation of steroids and other stopgap remedies, hiding from cameras, covering herself in warm weather from the pitying eyes of strangers and friends, and scratching, scratching, scratching. At the age of 12 she will find relief. But then the questions will remain: who will pay? And for how long? Miracles have a price.