Quid De Cogitatione?
Earlier this month, “60 Minutes,” the Sunday evening news program, had a segment by that name. It centered on an infant born with “spinal muscular atrophy,” a genetically passed condition inherited when both parents have a mutated copy of a gene called survival motor neuron 1 (S.M.N.1). That illfunctioning gene negatively affects the spinal cord and nerves, resulting in muscle wasting and weakness. Untreated, it is a neurodegenerative, progressive disease which can be fatal in its more severe forms.
The more severe form is usually fatal in two years.
The infant in this report was Maisie Green. She had the worst form, Type 1 S.M.A. (also called Werdnig-Hoffman or infantile-onset S.M.A.). According to the Children’s Hospital of Philadelphia’s website, “Type 1 S.M.A. is the most severe type of S.M.A. and may be present at birth or symptom onset maybe later, before age 6 months. Infants have problems holding [up] their heads, sucking, feeding, and swallowing, and they typically move very little. The muscles of the chest are also affected. The motion of the tongue is described as having ‘worm-like’ movements. Untreated patients typically require full-time ventilator support by age 2, and life expectancy is often shortened.”
Untreated, Maisie would die before age two. There is a drug, Zolgensma, an F.D.A approved treatment for spinal muscular atrophy. It is a type of treatment referred to as gene therapy or gene replacement therapy.
A one-time dose would repair her damaged gene.
According to the report on “60 Minutes” that one time dose would cost Maisie’s family over two million dollars.
Maisie’s mother saddled up. She started a GoFundMe account, insisted on meeting with the board of directors of the drug company that made the life-saving drug, and fought with her state’s Medicaid to pay for the treatment. According to “60 Minutes,” she prevailed, and Medicaid did cover an adjusted amount.
“60 Minutes” consultant Jonathan Gruber, chair of economics at M.I.T. and an architect of the Affordable Care Act, said that gene therapy is a “coming tsunami for the insurance industry.”
Science can now identify and cure many ailments that stumped the medical field a generation ago and use gene therapy to reverse many diseases.
Developing genetic therapy for a relatively newly understood disease can take years of research and run into billions of dollars.
Often the disease it cures doesn’t affect enough people to cover the expense of its development.
The news program’s takeaways were how current F.D.A. rules would have to be restructured to allow for the developmental research and who was going to foot the bill for this coming onslaught of medical expenses.
I had two other takeaways from this program.
First, what happens when gene therapy can extend human life?
Who’s going to pay for that? Insurance works only when premiums are more than claims. If everyone is going to prolong his or her life, insurance can’t pay that bill.
Will gene therapy to extend one’s life, presumably not covered by insurance, be something only the rich can afford?
My other, more immediate takeaway was, “Is a child’s life worth two million dollars?”
Don’t gasp! I believe so! And not just for my own family’s children. I’m on every Maisies’ side. No child whose life can be saved, no matter the cost, should be allowed to die.
I don’t expect there are many who would disagree with me on that feeling.
But … since 1966, 855 children have died as a victim of gun violence in their school. That’s one billion seven hundred ten million dollars ($1,710,000,000) if we could spend two million on each child to save all.
But … an estimated 37 babies were murdered in the Hamas terrorist attack. That’s seventy-four million dollars ($74,000,000) to save all.
But … an estimated 20,000 children have died in the Israeli bombing and shelling of Gaza. That’s a staggering forty trillion dollars ($40,000,000,000) to save all.
But … an estimated 738 children have died in Ukraine during the invasion by Russia. That’s one billion four hundred and seventysix million dollars ($1,476,000,00) to save all.
We celebrate the individual success, as well we should, but the loss of life by the aggregate somehow fails to impassion us.
It seems it’s cheaper, or easier, to bury children than bury the hatchet. Cheaper or easier to lose children than to have effective gun control. “Oh, when will [we] ever learn?”
