It's a funny disconnect between Twitter and everywhere else. Yesterday everyone I know online was glued to the Senate hearings. If you weren't one of them, here's the gist:
You can watch the whole thing here. These are just the highlights that stood out to me.
Long Covid patients, parents of patients, and medical professions gave testimony to the Senate, calling for a moonshot action to match the urgency of the problem. That is, we need to use all available resources and technology to find a solution. Right now there is NO medical process to help Long Covid sufferers. About a third of people with Covid end up with Long Covid, and half of them have symptoms similar to ME-CFS. The more Covid infections you get, the greater your chance of getting Long Covid. Until we have treatment, all we have is prevention, which means N95s. The only way to avoid getting Long Covid is to avoid getting Covid.
There were some protesters near the beginning, but they were on the same page as the speakers and Senators, and they were quickly escorted out.
Lots of people online commented about the number of people, mainly Senators who took off their masks to speak or didn't wear a mask at all. Tern said, "It's like taking off your seatbelt to run a red light." The time you most need a mask on is when you're talking or singing because it sends more of any virus you're carrying further and faster. And we have to always remember that we can feel perfectly healthy, yet be transmitting this very virus that the people in front of them just told them has destroyed their lives. We can't rely solely on good indoor air quality because the person right next to you could be breathing Covid into your face. Many senators, including Bernie, kept saying they were going to start taking this seriously, but then kept talking without a mask.
Curious.
That's Joaquin Beltrán in the picture at the top and here. He was given a little talking to from a security dude shortly after holding his sign.
The moonshot several of the speakers are demanding would emphasize searching for treatment and lots of R&D to better understand all this, and also taking a good hard look at the way insurance companies try to avoid giving anyone the insurance they need to get any possible treatment that might be available. The other hopeful discussion is around medical professionals who have been dismissive of Long Covid and have treated any mention as if it's a psychological condition. The senators want to ensure all medical professionals are schooled in this new disease that can come with over 200 symptoms and affect all major organs in the body. The evidence is clear that it's real, but too many physicians aren't trained to deal with it.
Ziyad Al-Aly, MD called for "the establishment of a new multidisciplinary research institute to address Infection Associated Chronic Conditions. Solving these requires a long-term coordinated approach."
He also explained that 'the burden of disease and disability from Long Covid is on part with the burden of cancer and heart disease. The best way to prevent Long Covid is to prevent Covid in the first place. There is no Long Covid without Covid." And he answered a question on how new building codes could help: "We proof buildings for earthquakes that happen once every 50 or 100 years. We invest millions. Why can't we do the same thing to make sure that our buildings are proofed against natural hazards like airborne pathogens?"
Senator Marshall recognized that the "gave a billion to NIH to form committees and pray about it" and that they need money to go specifically into diagnosis and treatment, maybe by giving BARDA a billion dollars, which is a more streamlined and focused organization. "We can't take two years to get geared up. . . . . At its core LC is a vascular disease it's about immune dysfunction, it's an autoimmune reaction gone crazy . . .we know that."
There were discussions around using treatments in the meantime that just have anecdotal evidence of working, or small trials, like low-dose Naltrexone (LDN) or using a colonoscopy followed by a course probiotic because "desperate times call for desperate measures." Al-Aly wouldn't endorse any publicly, but agrees they need to be used and also wants to accelerate trials so they can know for sure what works and what doesn't. They also discussed the reality that it's counterproductive to push cures with NIH money because the government can dictate whether or not to used them if they don't like the price tag.
Most important is interconnectivity and transparency across the country and between countries and listening to patient advocates and the Patient Led Research Collaborative, which is full of science-trained patients and advocates, and having more open engagement and data transfer, and being very transparent with the public! It's time for all hands on deck!
Absolutely.
And this is where AI could really shine to coordinate all the information to identify patterns and potential directions.
Overall it felt hopeful to have people in power listen and acknowledge the problem and possibly, with any luck, make some much needed changes to actually take a moonshot at this problem!
ETA: Dr. Al-Aly was on Cuomo:
***
Well-fitting N95s reduce transmission by about 95% - even higher if everyone wears them; cleaning the air helps by about 30%, and vaccines reduces hospitalization by 60%. Put together, we could ALL be 99.999% protected from this mess and more! We don't have to get sick every winter; it's a choice.
No comments:
Post a Comment