Last Fall, I had been asked by the NYS branch of the Democratic Socialists of America to share my family's experiences with the NYS Health Care System in a Press Conference in Buffalo N.Y.
It was put together by the DSA in hopes that average people can share enough Health Care horror stories to help give a voice to the millions of people in our state that struggle with getting health coverage and treatment. We shared these stories in order to back our legislature pushing through the New York Health Act.
"The New York Health Act [A.6058/S.5474] will provide comprehensive health care for every New Yorker. You and your healthcare provider of choice will work to keep you healthy—New York Health pays the bill. You will never have to fear going without coverage again—especially in the middle of a deadly pandemic.
Over the last year, tens of thousands of New Yorkers died, lost income, fell behind on rent, and struggled to pay medical bills. Meanwhile, private health insurance corporations made record profits. The COVID-19 pandemic puts everyone at risk, but Black, brown, and low-income New Yorkers carry the greatest burden of exposure, with disproportionately more serving as essential workers and disproportionately fewer having access to healthcare.
We need a legislative agenda of compassionate care to heal from this pandemic. That’s why we partnered with allies in the housing justice and decarceration movements to release the Compassionate New York Agenda. This is a road map to saving lives and billions of dollars by providing guaranteed healthcare, stopping unjust evictions, and reducing the number of people behind bars and harmed by the criminal and immigration systems. We reject the austerity agenda, and call for a movement based on compassion and care to drive the legislative agenda in New York.
Join us in building the movement to win universal, guaranteed healthcare -- and more. See below for ways to get involved in passing the New York Health Act!"
(Quote taken from The Campaign for New York Health's website.)
Around 8 volunteers were asked to speak in our city, and we were each given a slot of about 5 minutes to speak so I really had to chop down my previously recorded 15 minute talk about our experiences.
Reducing what I wanted to say sucked and I hacked a lot of very valid and necessary info about the catastrophe that is a journey with Mold Illness & the NYS Health Care System, but I kept in enough that people would become aware of, and possible start recognizing issues for themselves about the staggering problems we need to face in order to gain affordable and comprehensive health care for all in NYS.
Here is what I whittled it down to:
"My name is Britany LiButti. My family has medical insurance through my husband’s employer,
Because we have a steady income, and health insurance- we should have access to healthcare when we need it.
However this is our 5th year as a family struggling to afford healthcare.
Our health care horror story begins at the birth of our youngest daughter.
She wasn’t our first child so we planned for birth costs and saved ahead of time.
It seemed in vain.
Our baby was born with breathing complications. She needed to spend 2 weeks in NICU.
We also discovered she had internal birth defects that needed immediate correction.
Her birth and NICU stay emptied our savings account... before any surgeries took place.
Shortly after, we received insurance company letters arguing that procedures ordered by the delivery and NICU doctors were “not medically necessary” so they wouldn't be covered.
Her first surgery came and we received additional surprise penalties for out-of-network anesthesiologists and other staff.
Post-op, our baby was prescribed strong prophylactic antibiotics for two years to ward off sepsis.
The pharmaceutical company making her meds was bought out by Nirmal Mulye, of Nostrum Laboratories. He jacked up the price 400% overnight. We went from paying $20 for a bottle to $450 a bottle.
Nirmal told the Financial Times that he believed “it is a moral requirement to make money when you can.”
Big Pharma is sickening.
We planned to trek to Canada to get mediation cheaply.
Before we finalized plans, I called our insurance company and was told we hit our high deductible that year, so insurance would pay for her medication for the next two months.
The next year though, we'd be back on our own to manage. (We ended up discovering that we could request that she change medication due to cost- even though the efficacy would not be as good as it was with the expensive medication.)
My husband and I developed trauma around anything healthcare related.
Two surgeries later, our youngest child's condition “stabilized” at age 3.
2 months afterward- I suddenly developed debilitating health issues.
I lost functionality and was bed-bound for 3 months and couldn't digest food.
I lost 70 pounds in 3 months, I racked up over 60 systemic symptoms throughout my body.
Getting healthcare was a nightmare.
I had: 3 Primary care visits, 7 ER trips, 4 Urgent care trips, a cardiologist, a gastroenterologist, and a neurologist. I needed: a heart monitor, a colonoscopy, an endoscopy, multiple rounds of blood work/chest scans/x-rays/MRIs/COVID tests, as well as a hospital stay & 5 different rounds of antibiotics.
These were prescribed by medical professionals or used in medical emergencies, and needed to be paid for.
Insurance covered ~65% of all of that but because I had no official diagnosis, our medical insurance was able to go through each billed item and decide what was and wasn't deemed medically necessary to cover,
Surprise, a whole lot was deemed medically unnecessary,
and we were expected to pay for the rest out of pocket.
After all of that,...
I still had no answers.
I lost all faith in our healthcare system.
I researched independently and found an Integrative Medicine Dr. and finally got a diagnosis within 2 hours of meeting her. She listened to my symptoms and ran blood work that wasn’t the same basic blood test that had been ran at least 6 times by all the prior doctors.
My diagnosis was: Mycotoxicosis, or Mold Illness.
There was hidden mold in our home.
I needed immediate aggressive medical treatment.
Our insurance simply noted this doctor was out of network, and her treatments (outside of antibiotics for extreme cases) were mostly alternative and therefore not covered.
The insurance company only wanted to cover my 3 prescriptions for the big Pharma items and nothing else.
Revisiting insurance billing during the second year of treatment, they said that once I have spent $6000 for the year, -my deductible- that they will cover 60% of my visits and treatments when they receive the codes via billing from the doctor and if insurance feels that what they were billed is medically necessary to my recovery.
This seems like bullshit:
1) That I should even have to spend that much money to reach our deductible for the year before we get any assistance.
2) Most health care employees and medical insurance companies do not consider “mold toxicity” or “mold illness” to be a “real” condition. Therefore, and treatments or tests recommended for these conditions are considered "unnecessary", and they simply deny coverage.
I did some research and found that the closest thing our medical insurance company has listed on their website is “environmental illness.”
It has a 5 paragraph entry on their entire website that mostly covers chemical exposure and lead exposure.
“Mold Exposure” is mentioned only one time within that 5 paragraphs, whereby
they give no information on how mold can affect your health outside of a typical allergy, and they give incorrect information about removing mold from your environment.
Our health insurance (and healthcare at large) seems content to pretend to be ignorant about a genetic condition that genetically affects 25% of the population.
That is 1 in 4 people.
1 in 4 people is susceptible to mold illness and the effects of mold.
Mold statistics on many websites confirm that around 70% of homes in the US have mold in them.
That’s a potentially HUGE problem for the medical system in this country.
Our health insurance doesn't cover the necessary blood or urine testing that I (or my subsequently diagnosed daughter) need to monitor our condition either. It didn’t pay for the genetic testing I needed in order to discover my issues with detoxing mold and any other toxic substances.
Turns out mold is such a deeply rooted infrastructural issue that medical insurance companies and residential and business insurance companies would rather not support people grappling with its effects.
Seems like a condition that could potentially affect 25% of the population would be too costly of a condition to provide adequate healthcare for.
I still constantly submit billing codes and treatment codes just in case I can
manage to get lucky and have them approve one to reimburse us.
They haven't given me any funds toward nutritional supplements, or alternative treatments, as they aren't deemed actually necessary.
They give the bare minimum of funding for blood tests- only basic.
They don't cover continuous mycotoxin testing which guides treatment and highlights recovery.
Our Healthcare system at large denies the existence of mold related illnesses outside of allergies,
and fighting this system to get funding to treat mold illness I have found to be damn near impossible.
Having nothing left, we made a GoFundMe to cover some of our initial healthcare expenses. We have raised around $12,000 so far with it, all of it being immediately spent on items we need for medical treatment and recovery.
I appreciate the hell out of the people that support us on our journey. I do not appreciate the health care system is this country that is akin to a dumpster fire.
Looking back, none of this should have had to have been so hard.
The facts are simple:
We ALL deserve access to quality healthcare.
Healthcare is a human right."
To learn more about gaining access to better healthcare in New York State, please visit:
To become an advocate and share your health story, visit:
I have also shared our family's story on there. There a lot of Lyme warriors that have shared on here as well; Mold and Lyme often overlap.
There are many stories to read, we are not alone in our inability to deal with the costs associated with having chronic illness. Please read some stories if you'd like to know how the United States' (and in particular NYS') healthcare system needs an overhaul.
If you would like to get involved in advocating for better health care- reach out to me and I will put you in contact with someone in your state.
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