Now we need to talk. We need to talk a lot.
This is not a time for those with the bully pulpit on ALS to be shy. This is not a time to distract us with other projects that the Registry's budget can swoop in and do. The Registry was always about the incidence and prevalence of ALS in the United States. We need to speak to the numbers now.
ALSA and MDA and Communicatehealth Inc. have all received hundreds of thousands of dollars for education and outreach and communication related to the Registry project. This is a good time for them to step up and educate and reach and communicate.
Here's the report. It's a good starting point for a much-needed national conversation on ALS.
There's a lot to talk about.
Prevalence -- A One-Legged Data Stool
We learned how many living people with ALS that the Registry could find in that 13-month period. It said nothing of how many people were actually newly diagnosed with ALS in that period. It said nothing of how many people died from ALS in that period.
There are three facts that together should make every American squirm --
1. You are quite likely to GET ALS. (incidence)
2. You are quite unlikely to be ALIVE with ALS. (prevalence)
3. You are therefore quite likely to DIE from ALS. (mortality)
If they only look at the second fact, healthy Americans get quite a peachy, safe feeling. It's the feeling that ABC News propagated last night. Yes, "rare" makes healthy people feel safe from the threat. Nothing could be farther from the truth.
High incidence and low prevalence are a highly toxic combination.
The Registry did not address incidence, and the report admits a huge blind spot in that regard.
Organizations have played fast and loose with estimates for years -- a combination of a crutch and telling people what they want to hear. We need to learn to speak to the correct numbers correctly. ALSA and MDA have been insiders and paid contractors on this project. They have had time to prepare for this day. We need to rid the world of past inflated estimates of numbers of people ALIVE with ALS. The "up to 30,000" myth needs to stop. Once diagnosed, people die fast and there is nothing to slow ALS down. As much as we like to think that they are living longer because of compassionate care, they don't live long. As much as organizations like to tell us that they each support around 14,000 people with ALS in their clinic systems, that looks pretty impossible now.
Demographics -- Who Gets ALS or Who Makes It to the System?
This is a wonderful opportunity for us to step back and evaluate whether the demographic data cuts we saw in the report are really reflective of ALS or are reflective of those ethnic and socio-economic groups that make it to ALSA and MDA and Medicare and Medicaid and the VA with an ALS diagnosis. That's an important conversation. Do we lose people to ALS who don't look like Lou Gehrig and therefore die before they are ever diagnosed?
Don't Clam Up
It's also unfortunate that for the first time in years, ALSA issued a press release and did not post in on its facebook wall were it could be discussed openly.
We have spent over $40 million and have waited far too long to find just over 12,000 living people in the USA with ALS in a 13-month period. That's worth a lot of conversation. If you avoid that conversation, you'll miss the value in knowing the real threat of a high-incidence, low prevalence disease.