Dear Joe & Rochelle, Please Do Something About Long Covid, Anything!

After my third day of Long Covid IVIG (Intravenous immune globulin which is a product made up of antibodies given intravenously to boost the immune system) in my second round of infusions (four days for four hours every three weeks,) I was sent to the hospital--one of nearly 200 doctor appointments, lab tests, and ER visits over nearly three years of Long Covid. 

I had a wicked migraine and exacerbated chest pain. As my wife and I tried to explain why I was there (I was in so much pain, my communication was "good not"...more than normal.) I explained the infusions and that I have Long Covid. The ER doctor asked "what's that?"

You gotta be kidding me? We are approaching three years into this pandemic nightmare's tsunami after effect and we have doctors in a major hospital in a major city asking me what is Long Covid? Wow. Just wow. Not just ignorance, the Theodoric of York, Medieval Barber (Google that) medical community is still doling out CBT (cognitive behavioral therapy--think your way out of it) and GET (graded exercise therapy--exercise your way out of it) which are barbaric approaches to medical conditions. 

I covered how "we got here" in my John Oliver-style post called "Mad Vax" that covered the politics of Covid (largely ignoring, bungling, and diminishing vaccines and masks--going so far as the deranged "Circus Peanut" prez mocking Biden and other dimwits like Lauren Boebert calling them "face diapers." Um...it is an airborne virus and yes, it is far more deadly than the flu.

Unfortunately, the damage was done and (at least in the U.S., but I believe it's rippled throughout the world) and we have a combination of apathy, ignorance, and "story fatigue." Yes, story fatigue--just as the Ukraine war is receiving less press, people are tired of talking about Covid, yet most don't know what Long Covid is.

I use the word "tsunami" as we went through the pandemic earthquake that is Covid, but we're very much in the thick of dealing with the tsunami after effect that is Long Covid. As much as I rail on the grifter that left the office (with all those nuclear classified documents,) unfortunately the "blue side" of the aisle has done little to none to address the problem...crickets.

So who's the blame and what can we do?

There's plenty of blame to go around. POTUS, Speaker Pelosi have barely given "lip service" to Long Covid. Change (and I'm by no means an expert in U.S. Government) starts with Committee Chairs and the House of Representatives. Then we have health agencies; NIH and CDC.

If you have been living under a rock and don't know what Long Covid is, the technical term is PASC (Post Acute Sequelae Covid.) It's a post-viral persistence that impacts multiple systems of the body.) For me, that includes extreme fatigue, shortness of breath, neuropathy, preload insufficiency of the heart, cognitive issues (commonly referred to as "brain fog" but it certainly feels like rapid Dementia or brain damage,) vasculitis, chest pain, depression, and skin sensitivity among a kaleidoscope of ever-evolving symptoms. 

Before I get into who should do what, I should start with what do we want as a "long covid" community. We should be beyond the awareness phase, but a vast majority of those that could help still don't know what it is. I tuned into a hearing on "The Hill" back in July optimistic that our government was engaging on an action plan. I'll save you the time but you can catch it on YouTube, aside from one of my admired champions, (Dr. Monica Verduzco-Gutierrez) it was a "dud" with the Select Subcommittee on the Coronavirus Crisis, chaired by Rep. James E. Clyburn barely gaining an understanding of Long Covid is.

What should we do? By no means comprehensive, and would encourage your input in comments below or on Twitter or Instagram.

1) Education of Medical Field--we encounter far too much "gaslighting" of our condition(s) and as my ER example demonstrates, our hospital system is woefully ignorant.

2) Research! Putrino Labs was disappointed as were many of us that their request for funding of Microclot research was turned down by NIH.  We "lag" the world's research with the likes of Resia Pretorius from South Africa and Professor Doug Kell (EU.)  Fund research with a $B, not an $M.

3) Ubiquity of care with Long Covid Clinics. I found two such clinics in the United States; RTHM and IncellDx (Bruce Patterson.) Both offer biomarker panel testing--I'm working with RTHM (pronounced "rhythm.") This point includes grants or financial assistance for disadvantaged communities or those in financial need--this segment can't find nor afford such solutions.

4) Social Security Reform. I wrote about this in my last post, "Navigating The Choppy Waters of Long Covid Disability." People are losing their jobs and losing their homes at a disturbing pace. Social Security rejects 70-80% of all claims. My first "no" took eight months. How can you survive this when adding the exorbitant costs of medical care? We need faster review and benefits; NOW!

5) COBRA (that thing you get with an employer benefit package, you think you'll never need) reform. I pay nearly $1,700 a month for continued health insurance. This adds to the financial calamity we endure. We need lower health insurance premiums and for extended periods of time. I personally am exploring ACA-based plans as my COBRA expires in December. I won't go so far as to say we need universal health care, but we need universal health care. I'd settle for COBRA reform.

6) Housing options. This one I think would be better served in the private sector. My old pre-Long Covid brain would form an application that would match long-term housesitting with people displaced due to "Long Covid." We can't do much more than reside and watch over your property, but many are facing homelessness. Kind of like Turo, or AirBNB, but matching responsible (with background checks) people to housesit. I'm hoping some of my old venture capital connections might pick up on this.

7) Meaningful and expedited House Bills. There are four that have been proposed--most recently with Mr Beyer.

• S.3726 - CARE for Long COVID Act
• H.R.2754 - COVID–19 Long Haulers Act
• H.R.7482 - TREAT Long COVID Act
• HR 1616

The last one is "dead in the water" and the other two are still at the introduction phase. My opinion is they all fall woefully short of the above recommendations. As if we weren't depressed enough, these bills are a band-aid on a gushing wound. 

That brings us back to Director Walensky. The CDC  and the NIH did form the RECOVER Long Covid Initiative (would love to get opinion here or anyone that's got into one of their studies) but I've yet to see tangible impact by either agency.

Walensky has been under fire for her poor response to Covid and certainly under fire for sending kids back to school without masks; just as the Mayor in Jaws insisted on getting his locals to get in the water over 4th of July weekend. Another post, but children (pun intended) are not immune to the devastation of Long Covid and have their whole lives (potentially) to deal with this horrible disease.

I should point out that my Long Covid brain isn't what it was so I'm happy to be corrected on any (factual) information above. I polled some of my Long Covid friends and got words back like "criminal" and "negligent" regarding our government's response.

I have spoke to my Senator (Hickenlooper's office) staff last year. Emails this month have been left unreplied. I wrote my Representative Crow and got back a "I'm not on that committee" but here are some "fun facts" on Long Covid. Um...I know what it is--you clearly didn't read my plea for help, I have it. I asked for who was on that committee and did not get a response--I believe it's Diana Degette--not my district but the only one on it from Colorado.

Perhaps we should put Matt Walsh, Labor Secretary, in charge of this. He took a potential collapse of our economy with the train union situation that could have cost billions in the economy and seemingly fixed it overnight. How 'bout we put him in charge of our $16T potential Long Covid tsunami?

Footnote: Please correct comment, add your ideas. I continue to write my Representatives and Congressman with little to no response, but we need to keep throwing out our voice.