Always Minor, Never Major

 Some genetic conditions can be diagnosed with clinical criteria. Sometimes there may be major and minor criteria in order for a diagnosis to be made.

So you have to have 2 major and 1 minor, or 4 minor, or 3 major and 2 minor criteria to be diagnosed. (I'm making the criteria up as an example.)

I have all minor criteria...that would need a biopsy to confirm but the specialist wants to avoid it as it presents some downside for me. And family history.

The major criteria are pretty major. They are all potentially life threatening. I'm lucky I haven't had them yet.

But that luck is costing me access to testing.

If I met major criteria, we would proceed with further testing or simply make the diagnosis.

Meaning, in order to not be 4% on the fucking genetics calculator, I have to risk my life. I have to have a poor outcome in order to access science.

That's the economics at play here. We're right back to requiring everything to be acute and serious in order for anyone to allocate resources to be diagnosed.

You have to almost die to get somewhere in the medical system.

There's no economic pressure to capture atypical cases to ensure they don't have poor (and expensive) outcomes.

Meanwhile, genetics is increasingly recognizing that they've only been catching the extremes and that many genetic disorders can have a more mild presentation. (This is based on a quote from a geneticist in an article I read that unfortunately I didn't save. If I find it, I'll link it.)

But we're years from that influencing calculators.

I might not have whatever, but the thing is we don't know and if we're wrong, I (and my family) will pay a heavy price. But since it's not about me and I have little agency, we're going to go with calculated odds and pretend they guarantee outcome. 

What horse race have you seen tell gamblers the odds are a promise of performance? What financial advisor has promised you that today's rates of return are forever? 

This is the crack I'm falling through. We could know, but they'd rather gamble on my odds without my consent. 

Asthma update: In control. All good. Will probably stop talking about this episode now. Keeping up with the Pulmicort for a bit longer. Did my gardening. Got the irises in and harvested 15 pounds of potatoes.