The sweep of impending Medicare and Medicaid cuts in the US under Donald Trump could be about to put a severely chronically ill patient’s life at risk.
Living with multiple complex and under-recognised conditions including hypermobile Ehlers-Danlos syndrome (hEDS), myalgic encephalomyelitis (ME), tethered cord syndrome, postural orthostatic tachycardia syndrome (POTS), and mast cell activation syndrome (MCAS), 34 year-old US resident Emily Johnson has been in palliative care since the age of 28.
Trump: the thin end of the US healthcare wedge
Now, the Republicans’ plans under Trump to slash these programmes could mean losing access to the vital care currently keeping her conditions stable.
What’s more, not only will the cuts sever her financial bridge to her daily treatment, but it could stop her getting the surgeries she sorely needs. These are crucial treatments that could improve her long-standing health issues. These would help her regain a quality of life that enables her to not just survive, but live with fewer life-threatening, debilitating symptoms, and she hopes, even pursue her passions.
However, none of this was a given from the get-go. This is because, notwithstanding the cuts, these US’s healthcare insurance schemes were already leaving Emily falling through the gaps.
Of course, Emily won’t be the only US citizen facing a situation like this. Crucially though, her story encapsulates the devastating impact Medicare and Medicaid cuts could unleash on patients, particularly from low income households. There’ll be countless US residents living with a multitude of chronic health conditions, without access to the necessary financial aid for treatment if these cuts go ahead.
A catastrophic combination of chronic illnesses
Emily lives with a number of chronic health conditions that severely impact her daily life. These include, but are not limited to:
- Hypermobile Ehlers-Danlos syndrome (hEDS).
- Postural orthostatic tachycardia syndrome (POTS).
- Tethered cord syndrome.
- Myalgic encephalomyelitis (ME/CFS).
- Mast cell activation syndrome (MCAS).
- Craniocervical instability (CCI).
- Dystonia.
- Scoliosis.
- Intracranial hypertension.
- Lumbar herniation (slipped disk in the lower back which causes nerve compression).
EDS is a group of connective tissue disorders in which collagen doesn’t work. It’s characterised by joint hypermobility, skin hyperelasticity, and tissue fragility.
Her accompanying POTS is a type of dysautonomia – a dysfunction of the autonomic nervous system. It causes an abnormal increase in heart rate, as well as low blood pressure and volume when a person transitions from laying down, to standing.
Similarly, tethered cord syndrome is a disorder of the nervous system as well. Essentially, it’s caused by tissue attaching itself to the spinal cord, and restricting its movement. A neurosurgical condition, it’s common in EDS patients. While some may be born with tethered cord syndrome, it’s also possible to develop it. It can get progressively worse over time. Emily has had surgery to fix this – so it isn’t currently a problem. However, it’s possible it could re-tether at any point.
Meanwhile, ME is a chronic systemic neuroimmune disease which affects nearly every system in the body. It causes debilitating symptoms. These typically include influenza-like symptoms, cognitive impairment, multiple forms of pain, and heart, lung, blood pressure, and digestive dysfunctions. Post-exertional-malaise (PEM) is the hallmark feature of ME. This involves a disproportionate worsening of other symptoms after even minimal physical, social, mental, or emotional exertion.
Both CCI and MCAS are also common conditions for people living with EDS. The former involves increased mobility at certain junctions in the neck, while the latter is a disorder that manifests in excessive release of chemical mast cells, such as histamine.
Her dystonia is a neurological movement disorder that can trigger uncontrolled and painful spasms.
What’s more, a CCI and EDS expert in New York – neurosurgeon Dr Paolo Bolognese – has also identified that Emily has a number of serious spinal problems, and as a result:
Emily had developed dozens of neuromuscular, seizure, neurological and other diagnoses limiting her ability to work, continue a higher education, drive, exercise, run, walk or sit upright for very long, and even daily activities like eating meals, showering and household chores. Emily has had to rest at home in bed for most of the day, every day for 8 years. She has been in Palliative Care since age 28.
A perfect Trump storm in a privatised health system
For many patients, this catastrophic combination of chronic health conditions often co-occur in conjunction with each-other. There are multiple factors, including genetic mutations in EDS and POTS for instance, that link the conditions together. Another is the vagus nerve, which plays a major role in the parasympathetic nervous system. You can read more about some of these connections here.
Like for others living with a cluster of these, they have compounded Emily’s health and put her in life-threatening circumstances on a number of occasions.
When she was 22, an Epstein Barr infection worsened her POTS. As part of this, she suffers severe hypovolemia – low blood volume – which impacts her body’s ability to pump blood around the circulatory system as it should. Essentially, it’s a state of abnormally low fluid volume in her body, including with her blood plasma. Meanwhile, her CCI and intracranial hypertension (pressure build-up around the brain), alongside a suite of spinal injuries and conditions from years of all going untreated, has caused her cerebral spinal fluid leaks (CSF). Together, the pair have meant she has needed home IV infusions to replenish her fluid loss.
Repeated infections have also worsened her MCAS to near fatal consequences. And, as a result, this has exacerbated her EDS connective tissue damage and a number of spinal issues as well. As her GoFundMe describes:
She was admitted into Palliative Care at age 29, and with appropriate MCAS care she was able to return from near-fatal status by late 2020. However, MCAS going undiagnosed and untreated so long played a pivotal role in corroding tissue and further damaging Emily’s spine and organs.
If all that weren’t enough, her spinal problems, coupled with MCAS, as well as both Covid-19 infections and vaccines, have caused her to develop serious clotting conditions. Alarmingly, Emily has already had a pulmonary embolism due to these issues.
Her ME and long Covid have likely additionally contributed to her severe microclotting problems too – which required urgent treatment. Without this, her microclotting would have left her at risk of a second pulmonary embolism, or other life-threatening health emergencies like heart attack, or stroke.
It’s not just ‘having to lay down’, it’s living with literal brain damage
Emily expressed to the Canary how important it is that people understand how “devastating” these conditions are to live with:
Like, it’s not just having to lay down because I sort of don’t feel well.It literally feels like, the benign proximal peripheral vertigo, like I’m falling off the top of a building every time I have these flares. And that feeling persists for like several days, sometimes a couple of weeks for several hours a day.
Of course, Emily is referring to the tendency for the media, public-facing organisations, and politicians to vastly underplay the impact of many enormously debilitating conditions. What’s more, so often, they misrepresent how dangerous the intersecting of these conditions can be. That is, the impact of the plethora of debilitating symptoms is inordinately more than the majority of people realise.
Emily gave just one example of the type of life-threatening experience and daily lived reality she contends with that might come as a shock to most. An MRI showed that flares of Emily’s intracranial hypertension has literally been causing her brain damage.
Emily explained the symptoms and processes causing this:
When the cerebellar tonsils in the back of my skull are being sucked down into my brainstem, it’s pushing down on the cerebral spinal fluid flow to my brain. So it’s not just the leaks, it’s like the whole pathway for the flow to get to my brain is being suppressed. So a lot of my worst symptoms occur during these flares. The way the flares kind of work is it’s a roller coaster. The pressure surges begin, it starts causing pituitary damage in the front of my brain.
This pituitary brain damage causes a whole suite of metabolism and hormone issues. More specifically, the pituitary gland regulates many of the body’s functions as it oversees the endocrine system. The severity of her condition has meant Emily has needed specialist tests. This has included one where clinicians at Mount Sinai Hospital in New York “put a bolt” into her brain:
They drill a hole in my head and they put a probe that goes and touches my brain.
And then they have me lay down, sit up, stand up, sit back down, lay down over a couple of minutes each. And then they measure how the pressure in my head responds. And I’ve also tilted my head from side to side when laying down and when sitting up.
Emily approaches her terrifying experience with humour – a coping mechanism so many chronically ill people have to turn to amid a toxic medical environment that dismisses, gaslights, and trivialises their under-recognised conditions. While she is now getting some help from clinicians in the field, it’s almost inconceivably unconscionable she has been left without the investigations and treatment she has desperately needed for decades. Yet, Emily’s experience is characteristic of so many living with chronic illnesses. The paucity of care has consigned her to live in immense pain and with a genuinely life-threatening suite of symptoms on a regular basis:
I’ve had to have my brain probed twice and I’m may have to have my brain probed a third time. And to the point where I’ve told my friends that for my birthday, I want a t-shirt made that says like, I got my brain probed three times and I didn’t even get to see any aliens. I’m trying to keep humor about it, you know, but it’s really hard.
Overall then, it has been a perfect storm of health problems feeding into one another. It’s why, under the US’s privatised healthcare system, Medicare and Medicaid have both been essential to Emily.
Medicare and Medicaid make treatment possible… but for how much longer
To this point, Emily has only been able to access the care and surgeries she has needed due to Medicare and Medicaid.
These are the US’s two joint federal and state health insurance programmes. Not everyone is eligible for them – but as a disabled person who also claims Social Security Disability Insurance (SSDI) benefits, Emily qualifies for some of their coverage. Like the name suggests, SSDI is the US’s main social security support for disabled people. As her GoFundMe notes however, the SSDI alone covers only her most basic daily needs, if that:
The majority of Emily’s SSDI goes to home health and prescription copays, out-of-pocket supplements and care, and medical equipment and garments recommended by doctors. The rest of her SSDI covers her phone, home infusion care, and expensive allergy-free groceries. She lives with family for care assistance, transit, and free housing so she can afford the care she has received so far.
In other words, her SSDI hasn’t enabled her to seek out the treatments she needs to stop her conditions getting increasingly worse. That’s where both Medicare and Medicaid have come in – but only to a point.
Currently, her Medicaid helps her to afford the IV fluids she requires daily to keep her conditions as stable as possible.
What’s more, her Medicare insurance has made it so she could access important surgeries. Right now, she’s recovering from her second intracranial hypertension pressure surgery test, and a right styloidectomy. The latter was a surgical procedure to shorten the styloid bone in her neck. She’s hoping to follow this up with a left styloidectomy in the summer. After that, she might then be able to pursue surgery for her CCI and intracranial hypertension as well.
Trump cuts incoming…
Now though, things could be about to get inordinately worse. This is because the Trump administration has pressed forwards with plans to unleash a wave of trillions in public spending cuts. Naturally, in the firing line, will invariably be Medicare and Medicaid.
On the campaign trail, Trump had promised not to touch these. However, unsurprisingly, Republicans are making a move to slash them anyway. Crucially, commentators and opposition politicians have already pointed out that to meet this $2tn budget-saving agenda, it’s highly likely some of this will come from these.
For instance, in February, the US Congress House Budget Committee set out that the Energy and Commerce Committee would need to make $880bn in savings over the next decade. This is the body which oversees Medicaid, among other programmes. And Republican representatives have already confirmed that Medicaid will be a target for reform – meaning cuts of course.
So, Emily is concerned that any forthcoming cuts to these programmes could mean losing access to her care and surgeries altogether. She told the Canary that:
I also don’t know how much it would cost to try to access IV fluids if I lose home infusion via losing Medicaid — whether I try to get fluids at infusion centers or whether I’d have to go to urgent care or ERs to get them, as many commercial infusion clinics don’t take insurance and I can’t afford to pay hundreds of dollars per IV bag.
To make matters worse, it could also impact her care prospects in New York and Iowa, where she hopes to get her surgeries.
Further implications
Specifically, her Medicare won’t cover her living in a medical facility to get daily IV fluids. Therefore, if she loses the Medicaid, and consequently, her home infusion, she’ll have to rely on doctors sending her to infusion centres. However, Emily detailed the barriers she anticipates with this already.
For one, Emily isn’t sure that infusion centres wouldn’t just turn her away. Notably, she explained that:
Due to venous insufficiency and vein fragility from EDS and sodium overload issues from POTS, I can’t run a bag of IV fluids any faster than 3 hours, and that’s only if I haven’t had to skip any days of IV fluids so my veins are hydrated enough to rush a bag.
Generally, she needs IV fluids for four hours at a time, daily. But centres often aren’t equipped for daily patients – or willing to take them at that:
As you can imagine, even if my doctors order IV fluids to urgent care or emergency rooms, these facilities don’t like being burdened with infusion patients needing to stick around for hours, and they’ve turned me away without IV fluids despite severe symptoms in the past
On top of this, she worries centres won’t be trained or able to give her the IV fluids correctly anyway. Notably, due to years of peripheral catheters causing EDS connective tissue damage, and MCAS reactions making this worse, she can only have an intravenous catheter direct to her central vein. So the loss of her home infusion could put her more at risk as well.
And, even supposing she does manage to get the surgeries she needs, she told the Canary that:
If Medicaid is cut, I can’t get a waiver for a home health aid to help with surgical recovery which would be necessary, so not having this would mean I may not be able to get the cervical fusion and/or decompression even if I’m approved for one or both surgeries.
Not uncommon conditions, just shamefully ignored and stigmatised
And Medicare cuts are one thing, but Emily now faces these unaffordable costs for another reason too. That is, the persistent failure of the medical system that put her in this disgraceful health scenario in the first place. Notably, Emily has lived with some of these conditions her whole life, and others, for many years before she could get a diagnosis. All told, it has been an uphill battle for recognition, let alone getting the medical help she has needed.
So, she hoped to drive home that while there are no curative treatments for many of her conditions, with the right surgeries and therapeutic treatments, at the right time, she might not be so dangerously sick now:
It’s not at all uncommon for EDS patients to have several conditions from these sectors restricting blood flow and causing regular issues that can be dangerous and even fatal. The goal is try to get as much care as possible in the best order possible that improves quality and functionality of life before patients are in a dangerous or fatal situation.
Emily expressed to the Canary that medical inattention and inaction has irrevocably damaged her body. But, she wanted her story to raise awareness for others. She hopes it will help them find correct diagnoses, and get treatment before things become more severe as they have for her.
Clinicians should know – but don’t
Moreover, she pointed out how her conditions are hardly uncommon:
even though my type of EDS, hEDS, is common at 1 in 500, and even though the Covid pandemic doubled the POTS population, and even though MCAS was extremely common before Covid at 1 in 6 people, and even though Covid has massively increased the MECFS population (and with all of these, the populations of patients with severe microclots and craniocervical instability and intracranial hypertension and tethered cord syndrome and lumbar herniations and scoliosis all present in the above diagnostic populations have increased and worsened in severity) — despite all of this, most clinicians still mistakenly believe these aren’t common issues or that these aren’t severe issues, and as the patient populations and needs have grown considerably, the number of clinicians trying to learn from existing clinicians who are experts in these conditions hasn’t kept pace.
And Emily is right. Given the high rates of all these, you’d be forgiven for thinking that clinicians would know how to diagnose and treat them. In reality, this couldn’t be further from the case.
Notably, as the Canary has consistently reported, ignorance and stigma persists across the medical establishment.
It’s the very epitome of the metaphorical mascot animal – the zebra – encapsulating the experience of EDS and other patients with ‘rare’ illnesses. That is, medical professionals “hear the sound of hooves, think horses, not zebras” when they look at a person’s symptoms. In short, these conditions, that aren’t rare in reality, get missed, when they really shouldn’t.
In big part, it’s because doctors have long peddled the biopsychosocial brand of junk psychologising science. This dismisses the biophysiological pathologies of these under-recognised chronic health conditions. With it has come decades of patient gaslighting, neglect, trivialisation, and medical abuse.
‘Clinician associated trauma’ and life-threatening complications
Predictably then, it’s the same old story in Emily’s case too. Her crowdfunder page details this, stating:
Some doctors have refused care for Emily just because she has EDS, and this diagnostic discrimination interrupted and prevented critical care over the years. Other doctors suggested Emily was faking having these symptoms and conditions, despite specialist diagnoses and even confirming diagnoses from two or three or four other specialists. Also, despite fantastic mental health providers affirming these were biophysical issues and that Emily wasn’t faking seizures, collapses, blackouts, vomiting and other issues. Some doctors forced her to take psych medications that worsened these conditions significantly due to prescription interactions and condition interactions.
She was even forced into a psych ward when she was unable to walk and experiencing severe symptoms, where she was abused severely and denied medical care.
Emily told the Canary that ultimately, it was clinician malpractice that had repeatedly put her life at risk:
Unfortunately I have been in a handful of life-threatening situations before and since being admitted to palliative care when I was 28 years old. All of them were a result of not having access to medical care I knew I needed, and my knowledge of these conditions not being taken seriously by local clinicians who didn’t have the knowledge to help me but also didn’t want to listen to me about how to learn how to help me or transfer my care to someone who was knowledgeable who could help.
And her story could be a carbon copy of many others living with these and other chronic illnesses. The Canary has reported on numerous patients in the UK, and elsewhere, with strikingly similar experiences.
Crowdfunding to survive in 2025: nothing new, because nothing changes
It’s important to note that while Medicare has covered some of Emily’s treatments, it never has met all the expenses for her surgeries.
Medicare has accounted for 80% of Emily’s health insurance covered costs. The rest would ordinarily be paid for by Medicaid. However, there’s a catch. Medicaid would ONLY cover the remaining 20% for care in the same state that Emily lives in. Unfortunately, as many people living with chronic illnesses like hers will know, specialists are few and far between.
Unsurprisingly then, Emily has had to travel out of state to get tests and surgeries from experts in her conditions. Consequently, the international community has been stepping up. Together, they have been filling in for the gaping holes in the US’s social safety net. She has managed to fundraise some of these costs on a GoFundMe.
However, she hasn’t yet met her goal for all the upcoming surgeries she desperately requires. So her crowdfunder still needs all the help it can get.
It was another severe ME patient that the Canary has previously reported on who brought Emily’s story to our attention. Nevra, based in Pakistan, has been a long-time friend of Emily’s. She relayed to the Canary how Emily had been an unwavering source of support for her over the years, as she has for many other chronically ill patients.
Nevra shared a video with the Canary that she shared to her followers to amplify Emily’s story. In this, she articulated:
I think Emily is one of the bravest people that I know, if not the most brave. I think that we absolutely cannot lose somebody like her. It’s not just because she is an amazing person and does so much for the community behind the scenes, uncredited – it’s also that, she deserves to live.
Nevra therefore urged people to support Emily if they can. You can contribute to her GoFundMe page here.
Trump: putting chronically ill people’s lives at risk
The fact that these life-saving treatments could become even more out of reach for Emily is a scandal. Yet, states everywhere devalue disabled people so systematically, that the resources and treatments to even keep chronically ill people alive, is all too often, too much to ask.
Nobody should have to crowdfund to survive. However, this is still the shameful reality for too many chronically ill patients like Emily the world over – not just under Trump in the US.
Featured image supplied
