Bernie Sanders Released a Long COVID Plan. What The Plan Is Missing and What You Need To Do To Help Fix It, Explained.
We need to make sure this legislation goes the distance to actually help folks. We have to make sure we don't leave anyone behind.
This article is a call to action for comments on a Long COVID plan that was recently made public by a sitting Senator.
Just so it doesn’t get lost… LongCOVIDComments@help.senate.gov
The final official date to send in an email is Tuesday, April 23rd which is just a few days away… So, don’t wait.
But if you see this after that you can still trying sending an email.
I’m going to avoid getting into the nitty gritty of the proposal as this is still more in the beginning stages and is still far from being enacted into law.
The details still have a lot of time so the focus should be on broad concepts, that way they develop with the proposal as it becomes real legislation.
Let’s get to it…
There has been a monumental shift in the perception of Long COVID within our government and it really speaks to the success of all the COVID cautious activists and leaders who have been pushing so hard to get this disease the attention it needs.
As many of you are aware, Bernie Sanders recently had a hearing at the HELP committee and that led to him releasing a plan to increase spending on Long COVID and the badly needed research focusing on it.
The best part is that the money spent here is likely to help with other types of Chronic Illnesses, as the effects of COVID are widespread and can manifest as other known chronic diseases. So, any advances regarding COVID research are likely to advance treatments for other overlapping illnesses…
As one would expect from any first draft, it falls a bit short in regards to hitting all the notes it needs to so it plays the song we want to hear.
But, as luck would have it, there is an option to leave a public comment and have your voice heard regarding improvements that could be made.
There are 3 main points and they are broad ideas that can be approached in different ways but they do need to be approached, not left ignored.
1. There is no prevention.
“There’s no Long COVID without COVID.” - Dr. Al-Aly
Those are the official words of wisdom directly from the official NIH page.
The sad truth is that even if we found a Long COVID treatment tomorrow, if it doesn’t prevent a COVID infection then those people remain again at risk for Long COVID.
We simply cannot have a conversation about dealing with Long COVID without discussing the prevention of the disease itself. COVID protections are the exact cross section between workers’ rights and equity distribution.
We need government funded respirators, air filtration, and advanced UVC.
Simply put, there needs to be major and immediate infrastructure investments into cleaning our public air.
If our leaders are so insistent on forcing us to learn to live with COVID then major investments into cleaning indoor air are a requirement.
Just a few days ago, the WHO abandoned droplet theory completely and admitted that these pathogens transmit through the air…
So, the time to act is now.
Then just like cleaning our water or food, we need to clean our public air.
Continual reinfections with no end in sight makes it so any Long COVID solution is ultimately temporary. That means we are not having an actual discussion about Long COVID unless prevention is a major part of it.
2. The money ask is too low.
“There is no amount of public investment that is too much to help people with LC.” - David Cutler, PhD.
The current ask is 1 billion a year over 10 years…
And that doesn’t go as far as you’d think it might.
1 billion a year seems like a lot of money until you process exactly what that much money offers and it’s not much.
There are two primary issues with this…
Time frame and the actual amount of money.
First off, the time frame is an issue because we don’t have 10 years to wait on treatments and that’s giving a huge lifespan for a variety of frauds to perpetuate. We need to ensure there are rapid results that help patients…
Especially when the RECOVER study has harmed patients more than helped them by creating the 12 symptoms diagnosis which excludes almost all patients.
Just giving them more money on a loose timeline after their previous results is a huge red flag.
The second issue here is the actual amount of money.
We need to respond financially to the size of the problem appropriately.
This is a basic issue regarding “scale.”
Example: The 2024 National Cancer Institute budget is $7.8 Billion.
And even that is not as much money as it seems.
That’s Dr. Richard J Boxer who sits on the National Cancer Advisory Board.
And let’s not forget that additional $2.5 Billion is distributed over many years.
So, when dealing with chronic illness and the government, you have to realize the only chronic the government seems to understand is “chronically underfunding” itself. The numbers may seem large but it doesn’t mean what we think.
And it certainly doesn’t stretch as far as it needs to…
So, let’s scale that…
When combined Heart Disease and Cancer create 100 DALYs.
A DALY is essentially an equation to determine damage to human capital; it essentially tracks potential losses to exploitable labor. As terrible as it sounds that it even needs to exist, when capitalists abandon these equations it creates significant burdens on our communities.
These equations actually keep the working class safe…
Just in a really screwed up way.
But it also allows us to relate the idea in an objective manner, where we can make the argument that by allowing certain issues to be unmitigated they are really hurting their ability to acquire profit and meet quarterly projections.
And that’s before we talk about the hostile work environment they create.
But it’s not all as bad as it sounds…
We can use this as a tool to measure relative damage to human capital and how the loss of labor from disease translates directly into lost profits.
This is from a study published by Dr. Al-Aly last year.
The above chart demonstrates a DALY Burden rate that is THREE TIMES HIGHER as either Cancer or Heart Disease alone.
That means our investment needs to match that at least.
So, if we are investing $7.8 Billion a year into Cancer research with a risk of 50 DALY’s then we should be investing double or possibly even triple.
That’s upward of $20 Billion a year…
And even though that might seem like a lot, it’s a drop in the bucket of our almost one trillion dollar defense budget.
Let’s not forget spending has to increase every year to keep up with inflation.
3. We have to address that Long COVID is degenerative and meet that need with readily available Infusion Antivirals.
“Long COVID Has Caused 1000s of Deaths” - CDC
And the number of deaths is likely much higher.
Making plans for the future is great and it needs to happen, but this legislation is a proposal that expects the people who are currently dying from a degenerative disorder to push through legislation, a slow process, that is more likely to help the people who come after them… Essentially leaving a whole group of people to die slowly.
Recently the NIH director openly said that we are seeing live replicating virus in folks suffering chronic COVID and we know that the mechanics of the virus do not change between the Acute and Chronic phase… We know that the Acute phase is degenerative and if the mechanics don’t change then that would mean the Chronic phase is too.
That also means that Acute treatments are likely what is necessary to stop the degeneration that we are watching folks suffer.
I would normally explain that SARS2 is a syncytial virus that causes a vast amount of cell death but we can actually look at the people who are degenerating in front of us. It’s more important that we treat them with anything that might slow progression than it is necessary for us to debate mechanics or who is right or not.
The simple fact is that we know it can work.
If you’d like to read up on that syncytia idea then you’re welcome to take a look at my Long COVID article from 2022 but maybe do that later…
It’s not a wild idea to say we need to repurpose Acute Infusion treatments for folks suffering the Chronic effects of a COVID infection when we are already using that model in a less effective way.
Even when we talk about current RECOVER trials it has almost exclusively been about testing Paxlovid, which is an Acute COVID treatment… actually it’s a repurposed SARS1 drug and a repurposed HIV protease inhibitor… being tested for the treatment of Long COVID.
Though the Recover Paxlovid trials have left a bad taste with a lot of folks, repurposing acute treatments is ultimately our path forward to help these folks.
These are people that were infected early on in the Pandemic and they were treated with matching antivirals for the variant they were likely infected with…
While this Doctor can only expand it to 20 people…
The good news is that this is not the only study.
We need to create a method that allows folks with a Chronic infection to access already approved infusion treatments that match the timing of their infection… We can match variants to the right infusion treatments and the majority of people are likely to see some type of recovery.
This is the start of the recovery process for everyone with Long COVID.
This is not a complete solution for every patient but dealing with active persistent virus is the first step that does affect everyone dealing with Long COVID. We can’t even take a single step into dealing with Long COVID unless we are first clearing persistent virus and then protecting those folks from reinfection.
If COVID creates a degenerative Chronic infection in even 1% of cases then this is a catastrophic issue that requires the full might of American investments.
The hard reality is COVID is persistent in about half of infections.
Those are people without symptoms and 50% of them had persistence…
And they only examined a single organ.
The folks experiencing symptoms are the ‘canary in the coal mine’ of a much larger problem that includes everyone who has been infected…
Whether they have symptoms or not.
We need to start the conversation about the very real threat of Asymptomatic Long COVID, where a person has no symptoms at all until the degenerative nature of the persistence causes an extreme health event, and those can often be fatal.
If the concern is the virus is a vascular disease then that means persistence is likely causing continuous damage to your vascular system including creating fatty buildups and constant inflammation.
This makes your stroke and heart attack risk skyrocket…
And we are seeing the expected increases in these fatal events.
While almost no one even knows they are at risk.
Bonus: 4. We need greater resources outside of the normal disability channels so that folks can gain the support they need to recover.
People need resources, and people with Chronic Illnesses need more resources than the average person but simultaneously have access to fewer resources.
We need a new system to make resources available to pwLC, people with Long COVID, ensuring they have the tools to recover and rejoin society.
There is this idea that the chronically ill are just lazy but the opposite is usually true.
“People with chronic illnesses are often accused of faking being sick, when they actually more often are faking being well.” -u/goodluck_canuck
Even if we are unwilling to look at it from the personal perspective then please at least look at it from the economic, and by all means see it from the lowest possible perspective where this is a continuous problem that will significantly damage capitalism’s ability to exploit labor for profit.
As much as capitalists would like to think AI and Robots are ready to replace the working class we know that’s an empty threat when the human remains the best tool on the planet for creation…
Whether that be profit from bosses or joy between friends and family members.
And at the very least, that’s why we need to protect them.
So, final thoughts…
There are a few petitions going around that say they will send in an email on your behalf but I cannot stress enough the value of personally written emails…
Especially in situations like these where they are going to Bernie Sanders.
The email one more time —→ LongCOVIDComments@help.senate.gov
The official deadline is Tuesday, April 23rd 2024 but you can still try sending one later on as it doesn’t look like it’s set up shut down at a deadline.
And by all means, sign all the petitions you can… We even have a few coming up from Organizing for a Better Tomorrow which we hope you’ll sign on to…
But petitions do not replace the personal effect of a letter you write yourself.
So, sign the petitions but also do this too.
If you’d like a more in depth read into the Long COVID plan and all the corruption surrounding the proposal then I suggest RobynThRedd’s Substack where she gets a bit more detailed … and intense about it all; an important take in this moment.
Might as well dip your toes if you are into that type of thing.
Robyn uniquely encapsulates the Long COVID patients’ perspective where few can.
If you enjoyed the article or want to troll me you can find my social links here.
We also host a Twitter Spaces call on Tues. and Thurs… around 5:30 PM Pacific.
Or you can join us on Discord but you need COVID conscious socials for membership so you might want to focus your trolling to Twitter/X.
Very thorough and helpful to know what to add to any email sent. Thanks!