We Don't Have to Let MAHA Goons Kill Long Covid Treatments

Every time the Trump administration does something reckless or cruel, our fellow liberals spend days shouting, “Inconceivable!” They keep using that word. I do not think they know what it means.

There are two kinds of people in this world: Those who have Long Covid, and those who don’t know they have it…

Yet.

So it’s heart-rending, but not surprising, to see this administration shutting down its Long Covid office and making research for treatments yet another causality in their strides to “Make America Healthy Again.” According to a recent piece in Politico, “as many as 23 million people have the illness, which can range in severity from mild to debilitating.” As Phillip Alvelda told Lynn Parramore last year, Long Covid isn’t just a condition that impacts a demographic. It’s debilitating entire generations of adults and children, and it would take an entire book to chronicle the damage it has already done to us—far more than the official 23 million.

As I’ve explained here, if you’ve had Covid, you likely have damage you don’t even know about yet. It will become more and more apparent with more infections. Odds are, you’ll need treatment for Long Covid one day. So this matters for you. Researchers have said, "The oncoming burden of Long Covid faced by patients, healthcare providers, governments, and economies is so large as to be unfathomable." To their credit, Politico has been one of the only news outlets to cover the closure of the office, a move that represents a larger shutdown on research that never delivered much of anything in the first place.

Unfortunately, this draconian move only magnifies the indifference and thinly veiled resentment we saw over the last four years, which included an NIH that bungled billions in research funds, an FDA that dragged their feet endlessly on off-label approvals for treatments, and a NIAID director who declined to require or even encourage masks at meetings with Covid survivors because it was so “traumatizing” for her personally to wear one.

While Bernie Sanders pushed for a moonshot that amounted to $1 billion in annual funding, that amount was less than our last presidential candidate’s campaign, a spectacle packed with twilighting celebrities and overpriced podcast sets. It’s hard not to feel abandoned when our leaders blow through a billion dollars on vibes, toss us by the wayside, and then still manage to blow up our phones every night and weekend demanding more of our money.

Despite all this, there’s a way forward. There’s still hope. It doesn’t lie in more research studies. It doesn’t lie in corrupt politicians. It lies in doctors and clinics choosing to do something bold.

Practice activist medicine.

There are dozens of promising treatments for Long Covid, and we’re going to talk about them along with the organizations still doing vital work. We don’t need drawn out clinical trials or studies at this point. We need doctors and clinics who are willing to listen to Covid survivors and do the work. We need them to cut their own red tape and lean hard into off-label prescriptions.

You might wonder, as I did, why it’s not happening.

As a piece in STAT explains, an off-label prescription should be simple for Covid survivors, but it’s not. It requires consultation with “dozens of healthcare providers” and it can take “a total of 18 months to find a willing prescriber.” Here, Julia Moore Vogel and Charlie McCone go on to say that “many physicians are uncomfortable prescribing off-label medications for Long Covid even though one in five prescriptions in the U.S. is written for off-label use.” They worry about side effects and, perhaps more realistically, liability. If you know anything about this condition, you know the side effects are worth a chance.

They lay out the cost of doing nothing:

We all prefer making decisions based on gold-standard clinical trials, but if we do nothing while we wait for that data to be generated, people with long Covid will continue to experience debilitating symptoms, loss of income, homelessness, and death. Further, in the absence of guidance, people with long Covid will continue to self-manage their condition, investing in costly treatments and unregulated supplements.

Of course, RFK Jr and his army of wellness gurus can't wait to start hawking all kinds of supplements to the tens of millions who don't know they have Long Covid and yet still suffer from the condition. The demand for nootropics and brain boosters is already off the charts, with a market projected to hit $5.32 billion by next year. So, there's the incentive for killing Long Covid research. They want everyone buying this crap. If you want further confirmation, consider that health influencers like Janette Nesheiwat and Dr. Oz will soon join Jr as the heads of public health, completing the goop trifecta.

In the short term, it's easier and far more profitable than actually supporting public health. And even though I've written about alternative treatments, I've also made it very clear that I wish we didn't have to do this on our own. But that's the state of things.

Vogel and McCone ultimately make a call that deserves a standing ovation, impoloring doctors to start “bringing treatment options, along with an assessment of their risks and benefits, to their patients,” and to create a “national registry collecting data on current off-label drug use.”

This work is already underway.

For starters, you can try services like RTHM and CURE ID that aim to connect patients with treatments without endless waits. (I'm not endorsing them. I'm just telling you they exist.) HealthBio, a startup working on immune diseases, is also testing drugs like maraviroc and atorvastatin. We have a range of options. We just need clinics to use them.

Investigative journalist Joshua Pribanic has written a letter with the Long Covid Action Project and other Long Covid groups to push for more emphasis on drugs that target viral persistence, and they’ve been developing a list of treatments. 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.

The Long Covid Action Project is also developing a list of drugs that desperately need clinical trials and faster deployment. They stress the need for monoclonal antibodies and antivirals like pemivibart, azvudine, ensitrelvir (Xocova), and sofosbuvir. Even without an official government mandate, doctors and clinics could still prescribe these drugs and share information about them.

We just need them to try.