Post by Nadica (She/Her) on Aug 8, 2024 0:55:22 GMT
The Long Covid Moonshot - Published Aug 7, 2024
The Apollo Program made history by landing 12 astronauts on the moon between 1969 and 1972. It was such an astonishing achievement that some people still don't believe it actually happened. Regarded as the largest commitment of resources by any nation during peacetime, the program cost $182 billion in today's dollars. When politicians use phrases like "moonshot," they're trying to evoke Apollo vibes. If you're trying to evoke Apollo vibes, then you need Apollo amounts of money.
Bernie Sanders knows the right things to say.
It's good that we have his attention on Long Covid, evidenced by his recent introduction of the Long Covid Research Moonshot Act, following months of statements and hearings. But here's the thing:
It's not enough.
The Sanders team and the bill's advocates might be trying, but in response to that I think we can say something we've often heard when we're struggling through life:
Try harder.
Those of us with Long Covid are deeply wounded and deeply angry at the last four years, and advocates and researchers are outraged on our behalf. Collectively, we're tired of watching Covid surge around the world, causing mass death and disability, with no plan to face reality. No doubt Democrats are concerned some of us might not be voting in November. So here comes this bill to restore a shred of the trust they've spent three years tearing apart with their denial and neglect.
We're pushed out of public life. We're erased from society. We're harassed, ridiculed, and demonized on a daily basis. We can't do our jobs, run errands, or send our children to school without the constant threat of a disease that politicians and corporate media have agreed to downplay and minimize, while the biggest public health crisis in a generation, perhaps even a century, unfolds all around us.
In a growing number of cities and states, we're policed and even criminalized, forced to prove our condition is "real" to law enforcement or "concerned citizens" who want to unmask us, which is nothing short of a death sentence. As one person said of the recent mask bans with their pitiful exception clauses sweeping the country, "My health condition is that I don't want to get sick." We don't have clean indoor air. We don't have adequate vaccines. We don't have treatments. What we have is a little trick where you hold your breath if someone demands you unmask, and then exhale after putting your mask back on to force out contaminated air.
So, let's talk about the Moonshot bill.
Back in January, Bernie led a hearing on Long Covid where he described the situation with some of the gravity it deserves. When most other politicians are ignoring Covid entirely, Sanders has publicly acknowledged on multiple occasions that anyone can develop Long Covid, that it impacts all ages, that your risk increases with each infection, and it's so debilitating that it's driving some patients to suicide. It's been a refreshing dose of blunt honesty. As one columnist said, "Leave it to Bernie Sanders to restore a little faith."
Look, Bernie deserves some credit here. He's doing way more than anyone else in Congress. On a certain level, it's nice to hear a senator talk like they actually understand what's going on.
Recently, Bernie unveiled The Long Covid Research Moonshot Act, promising a major boost in flagging research efforts. According to the headlines, it brings attention to a public health crisis that too many politicians and too many corporate media outlets are willfully neglecting. The bill has support from 45 major public health groups, along with Senators Tammy Duckworth, Tim Kaine, Ed Markey, Tina Smith, and Peter Welch.
There's a big but here.
Not only does the bill face steep odds in a Congress distracted by performance politics and warfare, it also faces a mountain of justifiable criticism within the Covid community itself. We have to talk about it.
For starters, the bill only promises $1 billion a year for research.
That won't get you to the moon.
Investigative journalist Joshua Pribanic has written a letter with the Long Covid Action Project and other Long Covid groups to point out the flaws in this bill. The U.S. funds cancer research at $7.5 billion a year and HIV/AIDS research at $28 billion. If Long Covid were taken as seriously as these other diseases, then proportional funding would put the number at $800 billion or higher.
Funding for Long Covid research matters more than ever, and it's only going to get more vital. You wouldn't know it from listening to corporate media, but we're currently at the beginning of yet another huge Covid surge. According to Mike Hoerger who runs the Pandemic Mitigation Collaborative dashboard, "We just hit 1 million daily Covid infections in the U.S., per wastewater surveillance data."
That's a lot of Long Covid cases.
As Covid journalist Evan Blake recently said, "This scale of mass reinfections with any pathogen, let alone one known to be capable of damaging virtually every organ in the body, is unprecedented in human history." We're witnessing something monumental, and we've only begun to see the longterm consequences.
Keep that in mind as we go forward.
There's another problem with the Moonshot bill, and that's the language itself. It looks promising on the surface. It creates a new program under separate leadership within the NIH to "explore the best ways to prevent, detect, monitor, manage, and treat Long Covid in adults and children." The research plan emphasizes the exploration of potential in drugs that already exist while developing affordable new treatments for adults and children.
That part sounds good, but it's buried deeper in the bill, after language that hems and haws on Long Covid's similarity to other chronic illnesses, when we already know that Long Covid presents a unique and urgent threat. The bill frames Long Covid as a post-infection condition, and it neglects the role of viral persistence as well as the deep structural changes Covid causes to the body. Experts have testified on these issues, but that testimony hasn't made it into the legislation.
As Joshua Pribanic notes, "Long Covid is not a set of symptoms, but rather a multi-systemic disease that damages organs, neurological, gastrointestinal, and vascular systems, and causes AIDS-like immune dysregulation, with NIH research pointing to SARS-CoV-2 viral persistence as the leading cause."
You can see some of that research in a post I wrote, here.
The Long Covid Action Project has proposed legislation that does much more to address Covid and Long Covid:
Focus on antiviral treatment and biomarkers.
Focus on immediate clinical trials.
Focus on prevention and equity.
Focus on care.
We could be much further along on antiviral treatments. For example: As Long Covid advocate Daniel Brittain Dugger has stated, we could repurpose drugs like Azvudine and Tenofovir Disoproxil Fumarate (TDF) to help address the immune system damage that Covid does. Over the last two years, several medical and scientific journals have supported their use as potential ways to treat and prevent this form of Long Covid. We've also seen drugs that help treat hypometabolism in the brain after Covid infections.
Instead of jumping on this research, a wide range of corporate media outlets, at the direction of the Biden administration, reinforced by corrupt doctors and scientists, wasted precious time over the last three years insisting that Covid was mild, that Covid didn't damage your immune system, and that special treatments weren't necessary.
They were all wrong.
Four years into a pandemic, we still don't have reliable diagnostics, biomarkers, or treatments for the catastrophic longterm damage that Covid is causing to millions of adults and children. We don't have a social support system for those who can't work. If anything, agencies like the CDC and NIH have presided over the dismantling of the tools we did have to track and monitor the virus.
If you're going to fund Long Covid research, then you have to understand that it's a far deeper crisis than a fraction of the population having trouble sleeping or feeling tired at work. It's far bigger than 20 million Americans with chronic illness. It's an entire population facing lifelong immune dysfunction, cognitive decline, brain damage, heart disease, kidney disease, and cancer. It's a generation of people having strokes and heart attacks in their 30s and 40s. It's millions facing early onset dementia. You're not going to address that kind of problem with $10 billion.
Researchers have said, "The oncoming burden of Long Covid faced by patients, healthcare providers, governments, and economies is so large as to be unfathomable."
$10 billion over a decade will not address a problem that our greatest minds can barely wrap their heads around.
Over the last two years, the U.S. has provided $175 billion in aid to Ukraine, without question. So you can see why Long Covid patients and advocates might find $10 billion over ten years insufficient, even insulting, regardless of how well Bernie speaks on the issue.
We deserve better.
On a personal level, I have immune system damage from Covid. I've had my condition ignored and dismissed by ER doctors who thought I had HIV or diabetes but said absolutely nothing about my recent Covid infections. There's nothing in the Moonshot bill that offers me or anyone else with this kind of damage any substantial hope that there's going to be treatment anytime soon.
Meanwhile, we're expected to work, often more than one job. We're expected to raise families and contribute to the economy. We're expected to pay taxes, and our government uses our money to deal with everyone else's problems.
There's one more major problem with the bill. Although Bernie has mentioned that Long Covid disproportionately impacts Black and Latine patients, the bill doesn't include any specific provisions for marginalized groups and only makes vague references to social support.
When people are losing their jobs and ending up on the street because of a virus they were told was mild, they deserve more.
As teacher and Long Covid advocate Chimere Sweeney says, the politicians and organizations who drafted this bill haven't been communicating with "diverse populations who are critical of it." They don't want to hear suggestions on how to make the bill better. Like many others, she's frustrated that important groups are being left out of the conversation, and it's going to result in a handful of directors and advisors (mostly white, affluent) making decisions that impact everyone else. For her, it's also a mistake to trust NIH with any more money for Long Covid.
The NIH has benefited from the work of Covid advocates, but they haven't been putting the money where it needs to go.
It was Lisa McCorkell and Michael Peluso who called for a Long Covid moonshot in Nature last year. In their words:
A piece by Betsy Ladyzhets gives a good rundown on the current situation and the brief history of Long Covid research. Back in 2021, the NIH won $1 billion to study the disease.
As many say, "they bungled it."
According to FOIA documents, the NIH "lagged behind" privately funded scientists and "failed to [even] provide reliable estimates of how many people have Long Covid." Meanwhile, "clinical trials, launched last summer, garnered extensive criticism for failing to test promising treatments." They basically awarded money to a small handful of institutions who weren't familiar with chronic illness, without much planning. In fact, the same few institutions won more than $900 million.
Testimony from experts over the last year has made one thing clear. We know that at least 7 percent of the population deals with Long Covid, and that's probably a vast undercount. We have a much better understanding of what causes the various conditions grouped under that term. We also know that Long Covid will impact everyone in the long term, including those who think they don't have it, if we continue allowing the virus to spread without a coherent policy on masks, clean air, remote work options, and remote education.
Now it's time to test treatments. Specifically, it's time to get serious with antivirals and immune system therapies. It's time to treat Long Covid as a persistent viral infection, like HIV/AIDs. It's time to treat Long Covid as a disease that causes longterm and lasting damage to multiple vital organ systems. It's time to treat Long Covid as a national emergency that impacts everyone, not just a handful of people.
It's been time.
Here's the kindest thing we can say about the Moonshot bill: It begins to approach the bare minimum that Congress should've done two or three years ago, when studies began to show very clearly that Covid infections caused much more damage than we knew.
Advocates of the bill are going to say we should take what we can get, but there's a risk here. If we accept this bill in its current form, then there's a strong chance that Covid minimizers and politicians will simply proclaim, "Mission Accomplished" and forget about us again. The NIH blew a billion dollars, and this bill could mean they simply blow a billion dollars every year, make big promises once a year at a Senate hearing, and then go back to doing the same thing.
If politicians like Bernie are serious about dealing with Covid, then they need to listen to the voices offering constructive criticism. The point of constructive criticism isn't to make people feel good. It's to make something better and get things done.
Earlier this year, Joshua Pribanic released a short documentary on Long Covid demanding a minimum of $28 billion a year, with an emphasis on antiviral treatment. The film quotes legendary HIV/AIDs activist Larry Kramer, "Why do we have to fight your fight?" These words echo through my head every day, as people like us do all the heavy lifting to keep people safe from Covid, often at great personal cost. It's our fight, but it's not just our fight. It's everyone's fight. Everyone is going to live shorter, less meaningful lives than they could've if we don't start taking this virus seriously. We're tired of seeing politicians and corporate media treat Covid like a fringe issue that "only" impacts the vulnerable. We're talking about a disease that makes everyone vulnerable, even if they don't know it's happening.
The burden shouldn't fall on us to tiptoe around, stroke egos, and accept legislation that falls short of addressing a global emergency. Our job is to tell those in power what needs to happen.
Their job is do it.
This fight matters just as much as the fight against fascism. In fact, it's part of the fight against fascism. If you're fighting against fascism, you should be fighting for public health. You should realize that you're not immune or exempt from a virus that totals the human body.
We need more.
The Apollo Program made history by landing 12 astronauts on the moon between 1969 and 1972. It was such an astonishing achievement that some people still don't believe it actually happened. Regarded as the largest commitment of resources by any nation during peacetime, the program cost $182 billion in today's dollars. When politicians use phrases like "moonshot," they're trying to evoke Apollo vibes. If you're trying to evoke Apollo vibes, then you need Apollo amounts of money.
Bernie Sanders knows the right things to say.
It's good that we have his attention on Long Covid, evidenced by his recent introduction of the Long Covid Research Moonshot Act, following months of statements and hearings. But here's the thing:
It's not enough.
The Sanders team and the bill's advocates might be trying, but in response to that I think we can say something we've often heard when we're struggling through life:
Try harder.
Those of us with Long Covid are deeply wounded and deeply angry at the last four years, and advocates and researchers are outraged on our behalf. Collectively, we're tired of watching Covid surge around the world, causing mass death and disability, with no plan to face reality. No doubt Democrats are concerned some of us might not be voting in November. So here comes this bill to restore a shred of the trust they've spent three years tearing apart with their denial and neglect.
We're pushed out of public life. We're erased from society. We're harassed, ridiculed, and demonized on a daily basis. We can't do our jobs, run errands, or send our children to school without the constant threat of a disease that politicians and corporate media have agreed to downplay and minimize, while the biggest public health crisis in a generation, perhaps even a century, unfolds all around us.
In a growing number of cities and states, we're policed and even criminalized, forced to prove our condition is "real" to law enforcement or "concerned citizens" who want to unmask us, which is nothing short of a death sentence. As one person said of the recent mask bans with their pitiful exception clauses sweeping the country, "My health condition is that I don't want to get sick." We don't have clean indoor air. We don't have adequate vaccines. We don't have treatments. What we have is a little trick where you hold your breath if someone demands you unmask, and then exhale after putting your mask back on to force out contaminated air.
So, let's talk about the Moonshot bill.
Back in January, Bernie led a hearing on Long Covid where he described the situation with some of the gravity it deserves. When most other politicians are ignoring Covid entirely, Sanders has publicly acknowledged on multiple occasions that anyone can develop Long Covid, that it impacts all ages, that your risk increases with each infection, and it's so debilitating that it's driving some patients to suicide. It's been a refreshing dose of blunt honesty. As one columnist said, "Leave it to Bernie Sanders to restore a little faith."
Look, Bernie deserves some credit here. He's doing way more than anyone else in Congress. On a certain level, it's nice to hear a senator talk like they actually understand what's going on.
Recently, Bernie unveiled The Long Covid Research Moonshot Act, promising a major boost in flagging research efforts. According to the headlines, it brings attention to a public health crisis that too many politicians and too many corporate media outlets are willfully neglecting. The bill has support from 45 major public health groups, along with Senators Tammy Duckworth, Tim Kaine, Ed Markey, Tina Smith, and Peter Welch.
There's a big but here.
Not only does the bill face steep odds in a Congress distracted by performance politics and warfare, it also faces a mountain of justifiable criticism within the Covid community itself. We have to talk about it.
For starters, the bill only promises $1 billion a year for research.
That won't get you to the moon.
Investigative journalist Joshua Pribanic has written a letter with the Long Covid Action Project and other Long Covid groups to point out the flaws in this bill. The U.S. funds cancer research at $7.5 billion a year and HIV/AIDS research at $28 billion. If Long Covid were taken as seriously as these other diseases, then proportional funding would put the number at $800 billion or higher.
Funding for Long Covid research matters more than ever, and it's only going to get more vital. You wouldn't know it from listening to corporate media, but we're currently at the beginning of yet another huge Covid surge. According to Mike Hoerger who runs the Pandemic Mitigation Collaborative dashboard, "We just hit 1 million daily Covid infections in the U.S., per wastewater surveillance data."
That's a lot of Long Covid cases.
As Covid journalist Evan Blake recently said, "This scale of mass reinfections with any pathogen, let alone one known to be capable of damaging virtually every organ in the body, is unprecedented in human history." We're witnessing something monumental, and we've only begun to see the longterm consequences.
Keep that in mind as we go forward.
There's another problem with the Moonshot bill, and that's the language itself. It looks promising on the surface. It creates a new program under separate leadership within the NIH to "explore the best ways to prevent, detect, monitor, manage, and treat Long Covid in adults and children." The research plan emphasizes the exploration of potential in drugs that already exist while developing affordable new treatments for adults and children.
That part sounds good, but it's buried deeper in the bill, after language that hems and haws on Long Covid's similarity to other chronic illnesses, when we already know that Long Covid presents a unique and urgent threat. The bill frames Long Covid as a post-infection condition, and it neglects the role of viral persistence as well as the deep structural changes Covid causes to the body. Experts have testified on these issues, but that testimony hasn't made it into the legislation.
As Joshua Pribanic notes, "Long Covid is not a set of symptoms, but rather a multi-systemic disease that damages organs, neurological, gastrointestinal, and vascular systems, and causes AIDS-like immune dysregulation, with NIH research pointing to SARS-CoV-2 viral persistence as the leading cause."
You can see some of that research in a post I wrote, here.
The Long Covid Action Project has proposed legislation that does much more to address Covid and Long Covid:
Focus on antiviral treatment and biomarkers.
Focus on immediate clinical trials.
Focus on prevention and equity.
Focus on care.
We could be much further along on antiviral treatments. For example: As Long Covid advocate Daniel Brittain Dugger has stated, we could repurpose drugs like Azvudine and Tenofovir Disoproxil Fumarate (TDF) to help address the immune system damage that Covid does. Over the last two years, several medical and scientific journals have supported their use as potential ways to treat and prevent this form of Long Covid. We've also seen drugs that help treat hypometabolism in the brain after Covid infections.
Instead of jumping on this research, a wide range of corporate media outlets, at the direction of the Biden administration, reinforced by corrupt doctors and scientists, wasted precious time over the last three years insisting that Covid was mild, that Covid didn't damage your immune system, and that special treatments weren't necessary.
They were all wrong.
Four years into a pandemic, we still don't have reliable diagnostics, biomarkers, or treatments for the catastrophic longterm damage that Covid is causing to millions of adults and children. We don't have a social support system for those who can't work. If anything, agencies like the CDC and NIH have presided over the dismantling of the tools we did have to track and monitor the virus.
If you're going to fund Long Covid research, then you have to understand that it's a far deeper crisis than a fraction of the population having trouble sleeping or feeling tired at work. It's far bigger than 20 million Americans with chronic illness. It's an entire population facing lifelong immune dysfunction, cognitive decline, brain damage, heart disease, kidney disease, and cancer. It's a generation of people having strokes and heart attacks in their 30s and 40s. It's millions facing early onset dementia. You're not going to address that kind of problem with $10 billion.
Researchers have said, "The oncoming burden of Long Covid faced by patients, healthcare providers, governments, and economies is so large as to be unfathomable."
$10 billion over a decade will not address a problem that our greatest minds can barely wrap their heads around.
Over the last two years, the U.S. has provided $175 billion in aid to Ukraine, without question. So you can see why Long Covid patients and advocates might find $10 billion over ten years insufficient, even insulting, regardless of how well Bernie speaks on the issue.
We deserve better.
On a personal level, I have immune system damage from Covid. I've had my condition ignored and dismissed by ER doctors who thought I had HIV or diabetes but said absolutely nothing about my recent Covid infections. There's nothing in the Moonshot bill that offers me or anyone else with this kind of damage any substantial hope that there's going to be treatment anytime soon.
Meanwhile, we're expected to work, often more than one job. We're expected to raise families and contribute to the economy. We're expected to pay taxes, and our government uses our money to deal with everyone else's problems.
There's one more major problem with the bill. Although Bernie has mentioned that Long Covid disproportionately impacts Black and Latine patients, the bill doesn't include any specific provisions for marginalized groups and only makes vague references to social support.
When people are losing their jobs and ending up on the street because of a virus they were told was mild, they deserve more.
As teacher and Long Covid advocate Chimere Sweeney says, the politicians and organizations who drafted this bill haven't been communicating with "diverse populations who are critical of it." They don't want to hear suggestions on how to make the bill better. Like many others, she's frustrated that important groups are being left out of the conversation, and it's going to result in a handful of directors and advisors (mostly white, affluent) making decisions that impact everyone else. For her, it's also a mistake to trust NIH with any more money for Long Covid.
The NIH has benefited from the work of Covid advocates, but they haven't been putting the money where it needs to go.
It was Lisa McCorkell and Michael Peluso who called for a Long Covid moonshot in Nature last year. In their words:
Research on long COVID continues to be uncoordinated, with many researchers and clinicians communicating only with other experts from their own field, be they pulmonologists, neurologists or cardiologists, for example. Few clinical trials are testing interventions that address the root causes of the condition. And the lack of infrastructure for the rapid implementation of long COVID trials, as well as the absence of long-term resourcing for the field, means that many scientists and companies with potential therapeutics are hesitating to engage.
A piece by Betsy Ladyzhets gives a good rundown on the current situation and the brief history of Long Covid research. Back in 2021, the NIH won $1 billion to study the disease.
As many say, "they bungled it."
According to FOIA documents, the NIH "lagged behind" privately funded scientists and "failed to [even] provide reliable estimates of how many people have Long Covid." Meanwhile, "clinical trials, launched last summer, garnered extensive criticism for failing to test promising treatments." They basically awarded money to a small handful of institutions who weren't familiar with chronic illness, without much planning. In fact, the same few institutions won more than $900 million.
Testimony from experts over the last year has made one thing clear. We know that at least 7 percent of the population deals with Long Covid, and that's probably a vast undercount. We have a much better understanding of what causes the various conditions grouped under that term. We also know that Long Covid will impact everyone in the long term, including those who think they don't have it, if we continue allowing the virus to spread without a coherent policy on masks, clean air, remote work options, and remote education.
Now it's time to test treatments. Specifically, it's time to get serious with antivirals and immune system therapies. It's time to treat Long Covid as a persistent viral infection, like HIV/AIDs. It's time to treat Long Covid as a disease that causes longterm and lasting damage to multiple vital organ systems. It's time to treat Long Covid as a national emergency that impacts everyone, not just a handful of people.
It's been time.
Here's the kindest thing we can say about the Moonshot bill: It begins to approach the bare minimum that Congress should've done two or three years ago, when studies began to show very clearly that Covid infections caused much more damage than we knew.
Advocates of the bill are going to say we should take what we can get, but there's a risk here. If we accept this bill in its current form, then there's a strong chance that Covid minimizers and politicians will simply proclaim, "Mission Accomplished" and forget about us again. The NIH blew a billion dollars, and this bill could mean they simply blow a billion dollars every year, make big promises once a year at a Senate hearing, and then go back to doing the same thing.
If politicians like Bernie are serious about dealing with Covid, then they need to listen to the voices offering constructive criticism. The point of constructive criticism isn't to make people feel good. It's to make something better and get things done.
Earlier this year, Joshua Pribanic released a short documentary on Long Covid demanding a minimum of $28 billion a year, with an emphasis on antiviral treatment. The film quotes legendary HIV/AIDs activist Larry Kramer, "Why do we have to fight your fight?" These words echo through my head every day, as people like us do all the heavy lifting to keep people safe from Covid, often at great personal cost. It's our fight, but it's not just our fight. It's everyone's fight. Everyone is going to live shorter, less meaningful lives than they could've if we don't start taking this virus seriously. We're tired of seeing politicians and corporate media treat Covid like a fringe issue that "only" impacts the vulnerable. We're talking about a disease that makes everyone vulnerable, even if they don't know it's happening.
The burden shouldn't fall on us to tiptoe around, stroke egos, and accept legislation that falls short of addressing a global emergency. Our job is to tell those in power what needs to happen.
Their job is do it.
This fight matters just as much as the fight against fascism. In fact, it's part of the fight against fascism. If you're fighting against fascism, you should be fighting for public health. You should realize that you're not immune or exempt from a virus that totals the human body.
We need more.