For more than a year, I’ve been helping take care of multiple community members with very severe Long COVID and myalgic encephalomyelitis (ME) who lack supportive family.
I have Long COVID myself (and have likely had ME since I was 13, after an extended bout of mono). I am too sick to be doing this work — but there is no social safety net for people who are too unwell to advocate for themselves, and so in many cases, it is the sick who are taking care of one another. I live with the knowledge that the people I am caring for could be me someday.
There’s a lot I wish people knew about the world of very severe ME: that people are being turned away from homeless shelters, locked up in psych wards, and dying of starvation for lack of feeding tubes. But I would also stress the mind-numbing, soul-eroding, cosmically absurd mundanity of what I call survival admin. Alongside the forced starvation, there is paperwork. So much paperwork.
In an average week, I would estimate that I spend at least a third of my limited productive hours repeating requests that have already been made. “Could you please sign this housing form?” “Did you fax the updated order to the infusion company?” “Could you please upload the clinical notes from the appointment so we can get reimbursed by the grant?”
The last request took two months, nine phone calls, and in the end still cost the person I care for $1,200 because the notes didn’t have the correct ICD code. To make it worse, the grant that was supposed to reimburse them dropped their case entirely, citing “inactivity.”
I’ve learned to look at medical admin like a project management job, and track each step that relies on other people to make sure it actually happens. As a general rule, I now expect to ask at least three to five times before anything gets done and always ask for proof, like a confirmation or tracking number.
I understand that doctors are frustrated and overworked, too, particularly when it comes to dealing with insurance. As Britta Shoot reported this summer, many ME and Long COVID specialists are choosing to opt out of insurance entirely in order to “spend more time on patient care rather than administrative work.”
Having experienced this phenomenon firsthand, as both a caregiver and a patient, I would argue the opposite: that administrative work is patient care, especially for people with severe illness who are living in poverty.
Having a doctor who is willing and available to engage with survival admin makes the difference between being able to access necessities and going without, and can be the only lifeline against neglect. It’s the closest thing to having someone truly in your corner, especially if you’re navigating the Medicaid system.
Administrative work is patient care, especially for people with severe illness who are living in poverty.
This piece focuses on Medicaid, not only because Long COVID is a disease of poverty, but because Medicaid is the only major insurance that provides comprehensive coverage for home care. Access to home care allows people with severe ME to remain in the community instead of being forced into nursing homes. It’s also an essential protection against potential domestic violence because it prevents people from having to rely on partners or parents.
Here are some other goods and services that Medicaid will pay for, at least if you have the right paperwork.
- Incontinence and other bathroom supplies: This includes adult diapers, disposable bed pads or “chux,” and possibly even external “female” catheters, which are notoriously expensive. To get any of these items covered, a doctor has to prescribe them, and that doctor had better be actively enrolled with Medicaid and licensed in the correct state.
If the thought of asking for a prescription for diapers feels like a step too far — well, they’ll run you about $100–200 per month out of pocket.
- Transportation: If you absolutely must see a doctor in person, Medicaid will pay for private ambulance services — including stretcher transportation if you cannot sit up due to severe orthostatic intolerance — but it requires paperwork be completed by a doctor.
If your doctor doesn’t take Medicaid or doesn’t understand how to submit the correct forms, then your options are a wheelchair-accessible ride-share ($50–100, no masking, no accommodations for orthostatic intolerance), or a caregiver driving if they have a car.
- IV fluids: Some doctors are willing to prescribe IV fluids (for the low blood volume associated with dysautonomia and ME) but have no idea how to find an infusion company that will actually fulfill the order. After calling about a dozen companies in New York City, I found that most will do IV fluids only if you are also receiving another IV medication, such as intravenous immunoglobulin (IVIG), that will make the company a profit: Normal saline is relatively cheap (when it’s available), whereas IVIG can cost up to $40,000 a month.
Alternatively, you can book a same-day service for about $250 from any number of private-pay companies that market IV fluids as a hangover cure and general “wellness” boost.
People who can afford to pay for these things without assistance are able to skip over several administrative steps, leaving their doctors time to focus solely on traditional medicine. This means they get more access to specialized care, such as the cutting-edge testing offered at Mount Sinai’s Cohen Center for Recovery from Complex Chronic Illnesses, which aims to identify and treat the root causes of these diseases. (According to a spokesperson for Mount Sinai, the center has some patients who are on Medicaid.)
Meanwhile, patients living in poverty often have to ration their appointments. The average primary care appointment is painfully short — often around 15 minutes — and I’ve personally been instructed to bring up only one issue per appointment. If the next appointment isn’t available for at least three months, how is anyone supposed to get all their needs met?
At the same time, my friends with severe ME tell me they worry that their doctors will “drop” them if they send too many MyChart messages or ask for too much administrative work outside of an appointment setting. All of this puts additional burden on the sick person and contributes to the risk of rolling post-exertional malaise.
At the core of this problem: The healthcare system expects patients to have family members or partners who will build relationships with their doctors, and who can take on this massive administrative burden as a full-time job. Lacking that family support is itself an economic liability, an example of what researcher Sarah Halpern-Meekin calls “social poverty.”
The healthcare system expects patients to have family members or partners who will build relationships with their doctors, and who can take on this massive administrative burden as a full-time job.
Patient-led initiatives such as #MEAction’s pilot Home Help Navigation program in Minnesota can help bridge the gap, as could state-based funding for peer navigators within healthcare systems. Rooted in both HIV/AIDS advocacy and the psychiatric survivors movement, peer support connects people seeking care with others who may share their lived experience.
Additionally, every Long COVID clinic should employ an interdisciplinary team consisting of at least one primary care provider, one social worker, and one Medicaid billing expert. They should foster direct relationships with infusion companies, compounding pharmacies, and social services agencies so that sick people and their families don’t have to do nearly as much of the legwork.
All of this costs money. Any advocacy for research funding, whether at the state or federal level, needs to include funds to keep Long COVID clinics open and support their integration with social services. When researchers do find better treatments for Long COVID and ME, these networks will be essential in order to reach those most in need.
A model for this, in theory, would be New York Medicaid’s Health Home program. Health Homes are networks of providers who consolidate their services in order to help keep high-risk patients out of the hospital. (Contrary to the name, they do not necessarily provide housing assistance.) In practice, the vast majority of Health Home networks utilize a behavioral health model intended to serve people who meet rigid and often stigmatizing criteria of mental illness and substance use disorder.
This approach is woefully ill-equipped to help patients who have any kind of physical illness, let alone one as complex and disabling as ME or Long COVID. A model whose stated primary goal is to reduce “unnecessary hospitalizations” can never truly bridge the care gap for the Long COVID community when patients are likely being admitted far less often than they should be, and the most severely ill continue to be turned away from emergency care while starving to death. Even those who are lucky enough to be admitted for malnutrition rarely receive appropriate hospital care.
Karen Hargrave, cofounder of the U.K. campaign #ThereForME, wrote of the death of Maeve Boothby O’Neill: “Maeve was everyone’s patient but no one’s responsibility. She did not just slip through the cracks, she was plunged into a vast abyss.” There are so, so many Maeves, far more than most doctors will ever realize, because the sickest and poorest and most marginalized may never be able to access care at all.
As a caregiver and a patient, I am begging every single Long COVID doctor: Please do not turn us away because we are too much paperwork. Make us your responsibility. The administrative side of patient care may be tedious and alienating, but it saves more lives than you know. Don’t let us fall into the abyss.
The administrative side of patient care may be tedious and alienating, but it saves more lives than you know. Don’t let us fall into the abyss.
Miranda DeNovo is a patient and caregiver and the founder of Long COVID Safety Net, which advocates for urgent responses to the interconnected crises of homelessness and domestic violence among people with post-viral illnesses.
All articles by The Sick Times are available for other outlets to republish free of charge. We request that you credit us and link back to our website.
More commentary articles
- Severe people may hold answers to Long COVID. They must be included in research.
- Long COVID advocacy is incomplete without sex workers
- Telehealth is vital for people with Long COVID. Don’t let it disappear.
- Doctors who refuse to engage with administrative work are abandoning their poorest and sickest patients
