My husband Nathaniel has cystic fibrosis (CF). It’s genetic. It’s an autosomal recessive disorder–you have to have two copies of the gene to actually experience the symptoms of cystic fibrosis. Carriers, like his parents, have no symptoms.
When Nathaniel was 10, scientists found the gene that causes cystic fibrosis. The CF community was ecstatic–it was a major breakthrough hailed to usher in a new world of gene replacement and bring a cure in 10 years.
But every year from that point forward we have still been “10 years away” from that cure.
Nathaniel and I started dating in high school.
When I was at Millersville University (in 1995-ish), my biology professor told me that my boyfriend should be “allowed” to die because nature never intended for them to live. He didn’t account for the fact that the cystic fibrosis mutation is protection against cholera, and the same mutation that is fatal to Nathaniel likely saved the lives of Nathaniel’s carrier ancestors.
When we were in our 20s, the median age of death was early 30s. When we reached our thirties, it has moved to 35. A baby born with cystic fibrosis in 2018 was predicted to have a median age of death of 44. For those who died in 2018, though, half were under 31.
On October 21, the FDA approved a breakthrough drug therapy by Vertex call Trikafta. The treatment consists of three drugs: one re-folds a protein produced by the cell to move chloride ions in and out of the cell wall. The other two make sure that protein reaches the cell wall to do its job. When Nathaniel takes these drugs, they literally reconstruct the mechanics of every cell in his body. Every. Cell.
There are catches, of course. The treatment only works for certain CF mutations, so 10% of the patient population can’t use it. Others have too much liver damage or may experience liver damage from the drug.
Assuming it works as designed and the side effects are not horrific, this is the cure we’ve been waiting for.
Sunday, 60 Minutes ran an episode on George Church, a Harvard geneticist whose numerous goals include an end to aging, making all humans immune to viruses, bringing the mammoth back from extinction, and create a dating app that would prevent you from dating someone if you’re both carriers for a genetic disease.
Scott Pelley: You’re suggesting that if everyone has their genome sequenced and the correct matches are made, that all of these diseases could be eliminated?
George Church: Right. It’s 7,000 diseases. It’s about 5% of the population. It’s about a trillion dollars a year, worldwide.
It’s a throwaway line in an otherwise long interview. The interview stresses multiple times that genetic ethics are complex, and that they employ a full-time ethicist at the lab.
And yet: eliminating genetic disease through controlled breeding is the goddamned definition of eugenics.
Just sit with that a minute.
Sit with the idea that there’s a sixteen year old somewhere with Cystic Fibrosis who just found out that Trikafta is going to eliminate the vast majority of his CF symptoms. He’ll not just live to 44, he’ll probably live into his 80s. He’ll not spend months in the hospital every year, he’ll not have to do daily therapy treatments to keep his lungs healthy, he’ll likely avoid CF-related diabetes and intestinal blockages.
And in the same week, he learned that there are scientists at Harvard who would prefer that he not exist. They would prefer it so hard that they built a dating app to prevent his existence.
There is no question in my mind that Vertex used technology to create Trikafta. From simulating the folding of proteins to analyzing bulk data to running risk assessments to just typing up the FDA forms, nothing in the process of creating a new drug can be done without technology.
There is no question in my mind that George Church and his team at Harvard are using technology for eugenics. They would rather prevent Cystic Fibrosis than cure it. They see my husband, my friends, my life, as too expensive, a drain on society. They see disabled people as not-people, not members of the society, but as a drain on society. They see the protection from cholera that the gene affords as not worth the value of living with it.
I feel like I’ve been kicked in the chest.
Technology saves lives; technology dehumanizes people at scale.
Also published on Medium.