Thread by @bsw5020

When I was diagnosed with ALS one of the first things I did was sign up for the @CDCgov ALS Registry.

I assumed it was doing good work and that after a decade in existence it was helping lead the fight for cures.

I was so wrong. Enough is enough. /1

https://twitter.com/bsw5020/status/1432767672249462792

It is universally accepted that the CDC’s number for ALS patients in the US is wrong, missing HALF of all ALS patients, including a disproportionate share of people of color.

Thinking that they would be doing everything possible to correct this I met with them 2x in 2019. /2

After a 45 minute presentation on the virtues of the Registry, they told me they had updated numbers showing a much larger patient population and were working to release them asap.

2 years and more than 12,400 ALS patient deaths later they still have not released new numbers. /3

The impact of this failure is impossible to understate.

Every federal report uses this wrong number.

Funding decisions are based on it.

And every tv report erroneously cites it.

Yet year after year after year @CDCgov shows no urgency to fix it. /4

The other programs run by @CDCgov in ALS are either so small as to be meaningless—biorepository—or so disconnected from other ongoing efforts as to be functionally worthless—research funding.

Moreover the research that they do fund they hide from the public for years. /5

I discovered this recently when I asked for a trained neuroscientist on @iamalsorg’s staff to be allowed to attend the second day of their annual 2 day meeting.

To my surprise I was told that the staff member could not attend as the 2nd day was closed to the public. /6

The reason why: that’s the day research updates are presented. By coincidence, the 2nd day of the conference is today.

I then asked if other groups were allowed to attend day 2 and was told that @MDAorg, @LesTurnerALS and @alsassociation were allowed to attend. /7

The reason why? "ALSA, MDA, and Les Turner collaborate closely with the Registry to raise awareness and have historically attended both days of the meetings.”

Conveniently omitted from this is the fact that those 3 groups are PAID a lot of money to “raise awareness.” /8

As furious as I was by this obtuse answer, I was floored when I saw the agenda for Day 1 (below).

This reads like a high school first day of school agenda which is shocking for a $100M+ investment.

On top of this, @CDCgov had decided to turn off the chat function and audio. /9

Moreover not only was day 2 closed to the public but the one panel featuring patients (see below) was closed to the public as it was considered “too sensitive.”

This is f’ing absurd and was the final straw for me. /10

We have invested more than $100M in the @CDCgov ALS Registry and have next to nothing beneficial to show for it.

Even worse their leadership is tone deaf, dismissive of patients, paternalistic and utterly lacking in urgency.

I have stood by as we poured money into this…/11

…failed endeavor year after year without thinking.

No longer.

I will oppose any additional funding until an oversight panel of patient and clinicians is put in place and given real power to affect change.

We deserve far better than this sh&t. #ItsTime /end