In NYS there are millions of people struggling to get access to quality and timely health care, and cost is a huge barrier of access. I recently wrote in a piece for the "My View" section of our city's paper, hoping to help spread the word about the NYHA so more people can support it, and I also wanted to spread the news about the hurtles we have to jump when seeking health care for Mold Illness.
In NYS Governor Kathy Hochul has recently committed to “health equity” and “closing the coverage gap” but is avoiding taking a position on the Health Act. This won't do. We are sick of platitudes and words of support. We need leaders who take action and make actual structural changes to help all people.
Here is a copy of the letter I submitted to the editor as well as the short piece -(which was based off of what presented at the Health Care Press Conference held in 2021..
You can read that blog post here; it is very similar.)
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Hello, I would like to submit a piece to the “My View” column to help draw attention to the need for better health care for all New York State citizens, and to encourage our state representatives to take a position on the NY Health Act. My name is Britany LiButti, residing within Buffalo NY 14213. I will include my article below.
Thank you.
Britany LiButti
Founder of MeshWithMold, a website that shares our family’s journey with Mold Illness, and supplies ample Mold Illness/Biotoxin Illness education whereby cost is not a barrier to access.
“My family and I have been struggling to afford healthcare for five years. We have medical insurance through my husband’s employer and should have access to healthcare when we need it. We’ve needed it desperately due to various complex medical situations we have encountered during the past few years but have been continuously denied coverage for necessary care. Due to our issues with the healthcare system coupled with our family’s medical history, my husband and I now have trauma around anything related to healthcare- most notably though is crippling anxiety about paying for it and receiving quality health care access when we need it. Our youngest daughter was born with breathing complications and spent two weeks in NICU. We had appropriately saved for anticipated birth costs, apparently in vain. She had internal birth defects that needed immediate correction. Her birth and NICU stay emptied our savings account. Then came her first surgery to begin correcting the defects. Our insurance company argued that procedures ordered by the delivery and NICU doctors were “not medically necessary” and wouldn't be covered. We received additional surprise penalties after our daughter’s first surgery for out-of-network anesthesiologists and other staff. After the surgery, our baby was prescribed strong prophylactic antibiotics for two years to ward off sepsis. The pharmaceutical company making her medication was bought out by Nirmal Mulye, of Nostrum Laboratories. He raised the price of her medication 400% overnight. We went from paying $20 to $450 a bottle. We planned to trek to Canada to get medication cheaply. I called our insurance company first and was told we hit our high deductible that year, so insurance would pay for her medication for the next two months. After that we searched for any alternative we could afford, but the trade off was that the more affordable medicine would not be as effective. Two surgeries later, our child's condition “stabilized” at age 3. Then, I suddenly developed debilitating health issues. I lost functionality, couldn’t walk, was bed-bound for three months, and couldn't digest food. I couldn’t care for my children. I lost 70 pounds in three months and I racked up over 60 symptoms throughout my body. Getting healthcare was a nightmare. This included: multiple primary care visits/emergency room visits/urgent care visits, a cardiologist, a gastroenterologist, and a neurologist. I needed a heart monitor, a colonoscopy, an endoscopy, rounds of blood work, chest scans, x-rays, MRIs, COVID tests, a hospital stay, and five different rounds of antibiotics. These interventions were prescribed by medical professionals or medical emergencies but insurance covered only around 65 percent of this necessary care. Because I still had no official diagnosis, our insurance company went through each billed item and decided what was deemed medically necessary to cover. We were expected to pay for the rest out of pocket. I found an integrative medicine doctor who diagnosed me with mycotoxicosis – or mold illness. There was hidden mold in our home. I needed immediate aggressive medical treatment. However, this doctor the only one to figure out my illness, was out of network. I constantly submit billing and treatment codes hoping the insurance company will reimburse us for supplements, testing, or treatments. They only cover the bare minimum of blood tests. Extensive blood testing and Mycotoxin testing, which guide my treatment and highlight recovery, isn’t covered. We desperately made a GoFundMe to cover our healthcare. We’ve raised around $12,000 so far to pay for items I need for medical treatment and recovery. We have subsequently found that our older daughter is also profoundly medically affected by the hidden mold that was in our home, and I now face the same challenges getting her health care coverage and treatment as well. Getting necessary healthcare shouldn’t be this hard for anyone. Everyone deserves access to quality healthcare when they need it. The New York Health Act [A6058/S5474] will make healthcare a right in New York State by establishing a universal, single-payer, public health program to finance comprehensive health coverage. Governor Kathy Hochul has recently committed to “health equity” and “closing the coverage gap” but is avoiding taking a position on the Health Act. I passionately ask her and our legislators to strongly support the NY Health Act so all people can get the care we need.” -Britany LiButti
(Image designed by myself on CanvaPro)
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