Like me, you were probably riveted and inspired by the “COVID Diaries,” which chronicled the challenges of an intensive care doctor during the early and worst days of the COVID pandemic. The author is now focused on the subacute care of the survivors and is successfully using Hyperbaric Oxygen Therapy (HBOT) for patients with “Long COVID,” the persistent, life-altering symptoms that affect millions and for which there is no known cure.
Dr. Shai Efrati and colleagues have published data from a prospective, randomized, controlled trial supporting the benefit of HBOT in COVID-related neurocognitive symptoms and the Undersea and Hyperbaric Medical Society (UHMS) has published a review article, “Physiologic and biochemical rationale for treating COVID-19 patients with hyperbaric oxygen.” HBOT is increasingly being used to help mitigate the symptoms of Long COVID. The “off-label” use of HBOT is completely ethical and requires no Institutional Review Board (IRB) or formal research protocol if provided on a case-by-case basis.
In the blog post below, Dr. Wainwright provides her approach to the use of HBOT for Long COVID. This post is not to be taken as a medical recommendation to use HBOT in Long COVID, nor does it imply that HBOT is proven to work for Long COVID (although clinical trial data suggest that it works). This post is not to be taken as advice on medical practice or professional billing. I provide this information because Long COVID is affecting the lives of millions of people (most still in the work force), there is no known cure, data supporting the benefit of HBOT is compelling, and HBOT is very safe when provided by trained experts using a hard-sided chamber.
If you are a patient, please do not seek care at a facility that provides treatment with an inflatable, soft-sided device. They are generally operated by individuals without formal training in hyperbaric medicine, the bags are not safe to use with oxygen, and even when (improperly) used with oxygen, cannot provide the amount of oxygen which seems to be of benefit in Long COVID:
- Explaining The Math for Hyperbaric Oxygen
- Low-Pressure Portable Hyperbaric Chambers: The Pandora’s Box of Hyperbaric Oxygen Therapy
- Portable (Inflatable) Hyperbaric Chambers – Where Unsafe Meets Unethical
- The Risky Business of “Mild Hyperbaric” Chambers – Guest Post by Dick Clarke
- The AMA Adopts a Resolution Opposing the Unsafe Use of “Mild Hyperbaric Oxygen Therapy”
A Practical Approach to the use of HBOT For Long COVID by Sandra Wainwright, MD
What is Long COVID?
There are Roughly 700 million cases of COVID worldwide with 11-19% developing Long COVID. Using 15% as a middle estimate, that leaves us with potentially 105 million people suffering from Long COVID. What is Long COVID? Some people don’t think it exists because it mimics chronic fatigue syndrome or because many of the symptoms seem “psychological.” Long COVID encompasses a myriad symptoms including most prominently brain fog, fatigue, malaise, exercise intolerance, cognitive intolerance, loss of the ability to multitask, chest pain, lingering myalgias, inflammatory symptoms, anxiety, and panic attacks. It is a crippling disease.
3 Compelling Stories of Long COVID
Patient #1 – The Executive: I remember the first time I took a phone call from a long COVID patient. I previewed the medical chart to familiarize myself with the patient’s medical history and work up. Fortunately, being part of a large medical system, the patient had undergone the best of diagnostic testing and work up which included pulmonary function testing, cardiopulmonary exercise testing, various scans, blood work, inflammatory markers, and standard neurocognitive testing. When I read the consult notes, the story was typical for many long COVID patients. COVID infection was followed by mild to moderate disease such as the usual cough, fever, chills, myalgias, fatigue, anosmia etc. Eventually the patient transitioned to convalescence but without full recovery. Like many physicians, I had a preconceived bias that the patient may have some “supratentorial” issues. That’s medical code for, “the patient is nuts.” However, I allowed my staff to schedule her for a hyperbaric consultation. The case was too complicated to handle over the phone and I might as well formalize the patient education encounter and kindly tell her “no, I won’t do hyperbaric because long COVID is not a covered indication for HBOT.” When I met the patient she told me her story. She had been a high functioning woman, traveling all over the world, functioning well with little sleep, lecturing at universities in different time zones. She was an assistant to a former President of the United States. She had previously been able to walk four miles a day without effort but now most days, she couldn’t crawl out of bed.
Patient #2 – The Soldier: My second Long COVID patient was an active duty soldier. I love our military service members, so I decided to take his phone call to kindly tell him “no, Long COVID is not a covered indication for hyperbaric oxygen and insurance won’t pay for it.” His story was similar. He had caught COVID about a year prior, was terribly sick and never quite recovered. He got the vaccine and it exacerbated his symptoms. He was a top recruiter for the Navy and could no longer function. His brain fog was so severe he felt like he was existing in a dream like state. In his career he had undergone extensive and rigorous military training in dangerous situations, he was a decorated veteran and cool under pressure– before COVID. Then with Long COVID he had panic attacks and crippling anxiety symptoms. This was a complete break from who he used to be before his COVID infection. Again all the tests had been done – none of the results showing much physically wrong. He’d been given no answers and offered no treatment. Both of these people, previously at the apex of their careers, were unable to function.
Patient #3 – The Doctor: The news began to circulate in my system that I was trying to help long COVID patients, so I was referred a lovely physician. She had gotten COVID, as had her medical assistant (MA). The MA recovered but she did not. She was trying to participate in physical therapy, cognitive training, and cardiac rehab, but attempting to participate in any one of these activities completely exhausted her. She could not practice medicine. She had tried to practice by providing Tele health visits, but was afraid her medical judgement was unreliable due to brain fog and feared she might unintentionally cause a medical error that would harm a patient. When I met her, she was so bubbly and kind- just the type of physician you would want to take care of you and your family – but she was facing early retirement at a time when we most need caring physicians.
These cases are absolutely heartbreaking. I wanted to share these with you because they probably sound just like your friends or family members who have Long COVID. I’m starting to see a clinical pattern – although these are simply my observations. These patient stories were so compelling that even though I’d planned to tell them that I could not help them, I just couldn’t bring myself to say that. I told them I would fight for them, but that there was no guarantee their insurance will cover hyperbaric treatment.
How I Construct My Consult Note
Whether you can help a patient with HBOT hinges on the quality of your clinical documentation. That’s true for any patient, but especially true when trying to advocate for a patient with Long COVID. I am going to tell you my approach to documentation for Long COVID.
In the History, I provide the description of symptoms and detail the way in which their symptoms severely limit quality of life and functioning. I document the physical examination. My examination includes what I call a “poor man’s CPET (cardiopulmonary exercise test).” I put a pulse oximeter on the patients finger and check a baseline saturation and heart rate. Then I have them climb as many flights of stairs as they can safely to exhaustion. I check the sat and HR again at peak exhaustion, then see how fast it takes the HR to return to baseline. The reason I do this is to assess what “fatigue” means from a clinical standpoint. While most of my patients are in pretty good shape and can do the stair climb, I have picked up on post exertional desaturation – which suggests an impairment in the respiratory chain somewhere, so watch for that. I’ve also seen autonomic dysregulation where the heart rate is inappropriately low for the level of exertion, then after resting for 5 minutes there is delayed and sustained tachycardia.
In my impression and plan I usually write something to the effect that, “The following therapies have been tried by the patient and failed to improve the cognitive sequelae of long COVID,” and list all the interventions that have been tried. Don’t forget that many insurance carriers require a formal Plan of Care. That means creating goals with measurable objectives. Goals could include returning to baseline level of function, returning to work, a specific level of exercise tolerance, resolution of panic attacks, etc. The plan will include a series of treatment with HBOT followed by a revaluation to determine how the patient is progressing.
I describe the pathophysiological mechanism by which HBOT will be beneficial (frankly, I do that to support all the covered indications of HBOT), and provide either copies of the following papers, or links to the following resources which support the use of HBOT from a pathophysiological standpoint:
- Dr. Efrati et al, in their article published in Nature
- The UHMS position statement on COVID
- The review article published in UHM
- The article that I published in the UHM journal in which I discuss the ethics of using a safe “drug” like HBOT in a pandemic (Jansen D, Dickstein DR, Erazo K, Stacom E, Lee DC, Wainwright SK. Hyperbaric oxygen for COVID-19 patients with severe hypoxia prior to vaccine availability. Undersea Hyperb Med. 2022 Third Quarter;49(3):295-305. doi: 10.22462/05.06.2022.3. PMID: 36001562.)
Fighting for Patients – With Their Insurance Company
After you submit the best documentation you can, the real fight begins. First, watch out for payers that indicate, “no prior authorization is needed.” They are doing a “bait and switch” because what they don’t tell you that the service is not covered in the first place. If you provide HBOT, you won’t get paid. You are going to get denied, and then you will start the appeals process. Some insurance company will allow 3 appeals internally, then if you appeal again they have to send the case for external review – which is their way of clearing themselves of a conflict of interest. You should request a “peer to peer” review so that you are able to speak with a physician. You can request a specialty specific appeal so that you speak with another hyperbaric medicine physician. Not all insurance companies have actual people you can speak with. I’ve sadly had to turn away 3 patients who were insured by companies without an apparent appeals process – although this problem should not exist.
Patient #1 is still fighting the insurance company. When Patient #2’s insurance company gave me the green light, I was stunned and then emboldened. That’s why when Patient #3’s insurance was denied, I appealed, got denied again, appealed again got denied again and then I asked for specialty specific appeal – meaning “I want to talk to a doctor on your side that speaks my language so that will be either a pulmonary critical care doctor or a hyperbaric doctor.” The denial was overturned and we got insurance approval for the patient. That means in my first three patients, I got insurance approval for 2 of them. I am now willing to fight with insurance in order to treat every patient who comes to me with Long COVID. Yes, it’s time consuming.
My Experience with HBOT In Long COVID
I have only treated a few long COVID patients with HBOT so these are only my personal observations but I’ll summarize what I’m seeing so far.
- HBOT seems to help these people more that the many drugs they’re taking and more than the therapies in which they are participating.
- While the results are no miraculous, they are measurable. I have seen my patients who couldn’t work go back to work again. One patient was prepared to be permanently disabled and he is going to go back to his former job again.
- The brain fog is better, not 100% but improved by more than 50%.
- Chest pains are less frequent among patients who suffer from that.
When I talk to colleagues around the world treating Long COVID, they are excited and encouraged about the improvements.
Using the “poor man’s CPET,” I have picked up on post exertional desaturation – which suggests an impairment in the respiratory chain somewhere. I think it’s at the mitochondrial level. The autonomic dysregulation is also mysterious. This is a theory that I have that I cannot prove yet. I think the fatigue is a little bit physical, but most of it is neurological. What I mean is the brain is so injured that any activity — whether cognitive or exertional, taxes the brain and leaves the patient with profound fatigue. Here’s an example: In order for a long COVID patient to just talk to me on the phone, they have to rest before the event and will be wiped out for days afterwards.
I think we need a grass roots movement of caring hyperbaric medicine doctors and Long COVID patients to collectively become a force to reckon with. A coalition like that needs to lobby their Congressional representatives. We need the “HBOT Help for Long COVID” cause to “go viral” faster than the original pandemic. We need podcasts and You Tube channels to call attention to the need for and the value of HBOT in Long COVID. Other hyperbaric physicians should pursue insurance appeals. The payers should come to expect that physicians will pursue appeals to the fullest extent. They will come to understand the demand for HBOT and that HBOT is a useful adjunct to other interventions such as lifestyle modification and rehabilitative programs. I want hyperbaric medicine to be used off label appropriately. Using HBOT for Long COVID is ethical. We need physician autonomy back by which we can appropriately combat a disease by providing a drug because of its mechanism of action and not it’s labeling. Long COVID is the pandemic sequelae. We cannot ignore it any more than we could ignore the pandemic. The economic impact is already severe, so let’s not add to it by ignoring a viable treatment option.
Long COVID is our second pandemic. These are the forgotten patients who are alive but not living. They are usually women more than men, and ages 30-55. They cannot function, they cannot work, they’ve had to give up their careers to pursue finding an answer to their illness. My observation is that the people who suffer the most were formerly high functioning people at the top of their careers, managing complex tasks and multiple responsibilities. They remember who they used to be and are frustrated beyond description by their current limitations. There aren’t any answers for them yet. When I think about the economic impact COVID had on the planet when the world shut down, the silent killer is going to be the elimination of the productive individuals form the work force. Our society, and the funding for all our social programs, depends on a working population. The population is rapidly aging. It will collapse entirely if the decreasing percentage of individuals at the peak of their productivity are unable to work and pay taxes. Treating Long COVID is necessary for the future of the entire country, and HBOT is a safe way to make them better.