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Sarah's Journey

Part One: The Diagnosis

In our country, there are Americans who have health insurance thanks to the social safety net programs, such as Medicaid or the Children’s Health Insurance Program; there are older population adults who are able to pull from the social and health insurance program of Medicare to provide for some of their financial healthcare needs; we have folks who are on disability at all ages who qualify for Medicaid as well; and, there are some lucky working adults who have high enough incomes to afford health care insurance for their families or they have employers who found a reasonable health care insurance policy for their team members.  Some folks can afford a decent policy through the Affordable Care Act state marketplace with the help of premium subsidies.  But for some, none of these options are available and/or affordable.  They fall into a hole in our crazy patchwork quilt of health insurance options.  And in that hole, they risk their health, a future of debt, and even their lives.

Image Retrieved – May 26th, 2020 (Twitter)

These unlucky lower-income West Virginians – small business owners and employees, entrepreneurs, part-time workers, and many non-profit employees for example – might be hesitant to purchase ACA plans when they see a baseline premium (without subsidy) and deductibles that are just not within their household budget.  For too many West Virginians, every which way they turn, the find an unaffordable health insurance option. They are forced to go without protecting themselves from a medical catastrophe.  Like the old saying goes, some of us “get hit by a truck” we did not see coming.  And that was the case for Sarah, with no health insurance options that she could afford.

What if something much smaller impacts your health, something as small as a tick and you do not see it when it finds you.  That small tick has the capacity to hit you with a big disease:  it carries Lyme’s disease to you, which is common here in the Appalachian Mountains.

Image Retrieved May 26th, 2020 - https://www.cdc.gov/lyme/index.html

This is just the first part of a story of Sarah, a 35-year old single woman in West Virginia who shares her experience of being uninsured and living with symptoms of an unknown origin for over a year.  Luckily, her Lyme disease is finally diagnosed, but then she faces the nightmare reality of needing treatment that she cannot afford.  The path back to healthy lay in front of her finally, but the cost of treatment was blocking her way.

As a self-proclaimed “hard worker,”  working all of her life to provide for herself and sometimes others, Sarah knew there was a problem with our health care system and has tried to improve the system, at least in a small way, through her employment at a non-profit which advocates for better lives for West Virginians.

After struggling with symptoms for over a year and “shaking it off and keep going because that’s what you do in life,” and taking rounds of over the counter supplements and consuming  tinctures, Sarah finally went to her Osteopathic doctor during the COVID-19 pandemic in April of 2020 because she thought she was having symptoms of a heart attack.

Note, here is a 35-year-old woman who recognized some symptoms of a heart attack yet did not go to an Emergency Room; rather, she waited to get an appointment with her primary care physician.  She knew better but like many of us, Sarah did not want to face another medical bill. Thankfully, she was not having a heart attack but was experiencing adrenal burnout and her body needed rest.  The doctor told Sarah she would need a round of blood work completed. 

At her doctor’s office, for an uninsured person the blood work would have cost $1,300.  If she paid for the blood work in installments, the total cost would be $2,600.  Sarah found another facility to run the blood work for $400. That cheaper option may not be easy or convenient for her or her doctor, but when a person is uninsured, health decisions are often made by the wallet.

Once the original blood work was taken and reviewed, a second round with more specific testing had to be completed and reviewed as well.  Upon her doctor’s review Sarah was diagnosed with a late Lyme’s disease diagnosis, requiring intravenous (IV) antibiotic treatments.  Working with her patient who was uninsured, the doctor knew Sarah could not afford the IV antibiotic treatments which would costs another $1,400.00.  Sarah received this advice, “You might need to consider changing jobs to one that provides insurance or leaving your current job so you can receive Medicaid.”

“I thought, could these really be my only options?”

Understanding a little of the health care industry due to her non-profit work, she went to the Affordable Care Act state Marketplace to check plans.  After checking out the Marketplace, she stated, “I am confused as to how anyone can afford to stay alive in this country.  My top two plan choices would help with the overall costs of course, but how was I going to eat and pay my other bills after paying the monthly premium and paying for everything that insurance would not?”

“I cannot work any harder until I’m healthy.”

After that phone call to the Marketplace, amid a global pandemic, and during a challenging time for herself after being diagnosed with Lyme’s disease, Sarah continued to ponder, “Are these my only options?  Work and afford to live or possibly die, quit and go on Medicaid to have full treatment, or go into great debt to get treatment that I will be working off for the rest of my life?”

Sarah was at a crossroads with a decision she had to make quickly to take care of her own health and well-being.

West Virginians for Affordable Health Care (WVAHC) will pick up with Part Two: The Treatment in August.

If you or someone you know want to share their health care story please reach out to our Story Collection Coordinator, Lara Foster at foster@wvahc.org.  Each story can impact the hearts and minds of the public and our elected officials, help us advocate for more comprehensive healthcare coverage for all West Virginians.

*Sarah is a pseudonym for the storyteller’s name as she has requested to remain anonymous.


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