The patient will die. There is new precision therapy that falls along a continuum from false hope to cure. It is not snake oil; neither is it panacea.
It is expensive.
There are many players. They have different roles in the drama; thus, they have competing goals. None is completely right; none completely wrong. The policy to be concocted to rule the matter will be dictated by the winner. Who will be the winner?
The Patient: I am terminal. I am an infant. I, the central character, have no vote.
The Parents: (sobbing)…Please!
The Neonatologist: This is my patient. We must help her!
The Genetic Counselor: I can’t approve this expensive technology; my Administrator will have my job.
The Institute Administrator: It is a lot of money, but it’s a medical decision; ask the Department Chair.
The Department Chair: I don’t know. This isn’t my area of expertise. I just want the Genetic Counselor to stop calling me. Ask the Institute Chair.
The Institute Chair: Let’s form a subcommittee with representatives from the Lab Stewardship Panel, the Neonatology Department, Pharmacy, and Accounting. I need lots of input to make the best decision.
The Institute Chair’s Secretary: I’ll check calendars.
The Institute Chair: Create a draft policy for circulation and comment.
The Institute Chair’s Secretary: The meeting will be at 7 A.M., four weeks from Thursday, and will include 27 people on a Zoom call.
The night before the meeting: two more redlined versions of the draft policy arrive in the Secretary’s Inbox. Three of 27 invitees have commented. The secretary left work hours ago.
Eleven join the early morning meeting.
The consensus: It’s a difficult topic with lots of gray areas. Let’s ask the Revenue Cycle Management team to learn if Insurance will cover this.
Four e-mails, three phone calls, and five weeks later, the insurance company Medical Director responds: I can’t authorize this. It’s experimental.
The Patient: I died.
And the winner is… inertia.