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Musings and reflections on—you guessed it!—life, filtered through the neurodivergent brain of a former business strategist turned essayist and fiction writer.

When staying alive is ridiculously expensive

How chronic health conditions (can be) exorbitant, factors one may not consider, and how (early) knowledge of one's health may equal a stabilized condition and financial prescience.

Sara Eatherton-Goff

May 2, 2023

To note: If you can prove hardship1 or get a letter of medical necessity,2 some insurance companies will cover (some) supplements and non-covered medications prescribed by a doctor or specialist.

My first two letters got rejected with non-specifics as to why. But I’ve emailed my specialists for new letters.

I’ll never stop sharing about MCAS, and for good reason.

This jerk of a condition snuck up on me with a vendetta. And with the obscene Covid-19 infection rate, MCAS has exploded onto the scene.3456

Sharing this with you is important to me.

I’ve gotten a lot of questions about Mast Cell Activation Syndrome (MCAS/MCAD)7 over the past couple months, which I’ll share both the questions and my responses publicly in time. But, for now, I wanted to level a potentially overlooked facet of MCAS and chronic illness that many may not consider: The expense.

The worst part is, a lot of people put off their healthcare because of how expensive it is. I somewhat did initially, and because the dozen+ doctors I saw in Florida ignorantly focused on my large body as the problem, and didn’t look further into my experience or symptoms—a topic big enough for it’s own essay. After that medical experience, I decided to “wait” until after we moved to Seattle to seek help. That year+ of waiting might’ve made a huge difference in my current health situation, though.

There are so many reasons why people don’t get or put off care.

Let this serve as a budgetary warning for why you shouldn’t do that, if you can help it.

In an earlier post, I shared a bit about how MCAS can affect the various systems of the body.

But there’s more to it.

Being chronically ill is frigging expensive. But make it a disorder that (U.S.) insurance companies don’t yet acknowledge, or one they make you jump through hoops for—or both—and you’re in for a massive out-of-pocket expense many never plan for. Meaning: A majority of the managing medications and even tests aren’t covered by some/most insurance companies.

Until I hit my deductible each year (HSA account8, PPO9), I spend over $1,400 a month just to stay alive and moderately comfortable.

Healthy people generally don’t hit their deductibles every single year, and often if one does, it’s toward the end of the 12-month cycle. I hit mine between February and April annually. That means I, alone, reach a $3,750 copay in often the first quarter of each year. Even reaching my whole, five-member family’s $10,000 out-of-pocket maximum sometimes before June alone, too.

To note: Reaching my deductible and our family’s out-of-pocket max is only from medical expenses that insurance cover. So, until I hit my deductible, we pay a minimum of $1,400 a month for my survival every month. After reaching the deductible, insurance only covers about $400 (the Cromolyn Sodium/Gastrocrom,10 used to aid in reduction of MCAS’s effect on my gut).

Mind you, this figure is just for one condition.

And this cost doesn’t include food, which is a huge factor for my subset of MCAS. Food is currently the biggest expense for our family of five, but mainly due to my food-sensitivities and being in an urban center—one of only two cities in the U.S. that can support all of my conditions.

That $1,400 is only for medications, prescribed supplements, other over-the-counter antihistamines, and a couple skincare ointments (Avéne Cicalfate+* to calm my histamine-flared skin, Homeoplasmine* and/or Elastoplast* to lock in skin re-hydration and recovery, and more). Because MCAS severely affects my skin.

One of the two most expensive medications was never submitted to the Food and Drug Administration (FDA)11 for approval: Ketotifen.12 No other wealthy country lacks access to it—only the United States. That means, unless the medication is submitted and the FDA approves it at some point in the future, insurance will never cover it regardless of medical necessity. That costs, on average, (varies, but is seemingly never lower than) $382~ plus shipping per month. And it's the one medication that offers me the most positive impact thus far, outside of Singulair13 which dramatically helps with the triggers that cause dyspnea—shortness of breath.

It can take several weeks to a couple months to receive this prescription. Even from Canada—just a 2-hour drive from my apartment, excluding border checkpoint time—Canada’s manufacturer-cost of the prescription (which still requires a U.S. physician's prescription to be able to get) is 6 times higher than the two other countries’ versions of it.

Every time I’ve tried to order it from the Indian or Turkish manufacturers, it’s back-ordered (through the same, prescriber-recommended pharmacy). Or, the pharmacy calls me to say there was an issue with shipping, and asks if I’d like to try one of the other two manufacturing-country options.

Unfortunately, they don’t keep the outside-of-Canada prescriptions on-hand—everything ordered ships directly from the manufacturing country.

At that point, I was on the verge of desperately needing this medication.

Month after month of this medication-tango, I’d always end up having to pay the almost $400 for the Canadian manufacturer anyhow. So, I just suck it up now, and go with that one straight away.

If I run out of this medication, my quality of life evaporates. All I can think about—as a mom and a wife, even—is: Is life worth this (suffering)?

I confessed this to my therapist recently, and she was sympathetic. Her thoughtful reception gave me the confidence to share it with Brian, and he held me as I cried to him.

I’m not suicidal, to be clear. But I’m exhausted.

I feel stuck. I feel like I’ve cornered Brian, limiting his professional options as he’s the current breadwinner with the better and less costly insurance option.

My situation makes moving to a less expensive area almost impossible.

Considering all my conditions, I doubt we can move anywhere else because I need a network of specialists (who are compassionate and not idiots). And consistent access to proper medical care. NYC is the only other city in the U.S. that could manage all my issues, and understand how they interact with each other. But because heat is my most acutely dangerous MCAS trigger, I’d have to stay indoors/at home at least four months out of the year if we lived there.

Besides, the only other places I’d want to move to are outside the United States. But, no other country pays engineers as much as the U.S. does, which may not be a problem if it didn’t cost so much to keep me alive.

Note: Although the countries I’m interested in have socialized medicine, I’m unsure if all of MCAS is “covered,” so to speak. There’s a risk that it still costs (nearly) the same medically, but we’d end up making significantly less, rendering an expat move “worse” than staying where we are.

So, what do people with MCAS at my level or worse do if their income is less than ours?

I feel sick just thinking about it....

Thankfully, after increasing the dosage of the non-insurance-covered, expensive med, my almost month-and-a-half long flare is finally reducing.

But, spring is here, so there will definitely be a next flare….

I had my immunology follow-up last month, where my doctor prescribed the Singulair. It’s already making a difference. I went from needing a rescue albuterol inhaler at least three times a week to only needing it once in the last month.

But after this, if the medications I’m currently on still can’t regulate me, or if I’d like to try to reduce the severity of my skin’s mast-cell reaction (which I would), the final and only potentially cutaneous-controlling option of medication is a weekly injectable in both forearms: Xolair.14 I'd have to travel almost three hours round trip for it weekly… And it costs (often well over) $40,000 a year with a high likeliness that insurance won’t cover it. My immunologist pre-determined that I would need 300 mg injections in both forearms, and the medication is just shy of $1,300 per 150 mg injection. That’s $5,200 a week, not including the cost of the professional who injects it. Plus, there’s a high likeliness of anaphylaxis with each injection.15

[ See: What to do if insurance doesn’t cover your medication, Insurance[dot]com ]

There’s a chance my MCAS severity might’ve happened regardless of earlier diagnosis. But current research reveals that my heightened fatality risk and overall reduced quality of life likely wouldn’t be this bad if it was caught earlier.

The added years going undiagnosed sealed my fate, so to speak.

With that, my brother is (also) having issues related to Ehlers-Danlos Syndrome (EDS),16 and I've had a heck of a time finding him a doctor to help, let alone someone who's familiar in Central Florida. EDS is more widely acknowledged and understood than MCAS is, yet it’s still difficult to find care where he is. This lack of access to care seems to be a common problem across the U.S., according to various posts and comments on the MCAS subreddit.

He also shares some of the early symptoms for MCAS. But he can't afford to leave the state for treatment, or even move to be close to ongoing care and to reside in a more suitable climate.

Life’s expensive already, and hard enough without this.

Early diagnosis and sharing with people we care about is how we can possibly prevent or stabilize early on, or simply slow the severity of symptoms for Mast Cell Activation and Mastocytosis17 folks. Like I wrote in a previous post, once we’ve passed a certain point—dyspnea and onto anaphylaxis—there’s no coming back. That trigger will always cause dyspnea and anaphylaxis—massive risks to your health and future, and a constant upset to your quality of life.

I hope that sharing about MCAS and other chronic health conditions can help even just one person’s life, health, and future.

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