STRONGSVILLE, Ohio — Angelina Fanous doesn't want to spend a second of her life fighting with her health insurance company.
After all, she's terminally ill.
However, the Strongsville resident said she continually battles delays and denials for care and treatment.
She said Ohio doesn't require health insurance companies to provide her the type of health coverage she needs.
"I think it’s unfair that I’m forced into these substandard plans and basically robbed of choice," she said.
A rare diagnosis
Over a decade ago, Fanous was having the time of her life.
A journalist for VICE News, she was sent overseas to cover serious topics, like sexual assaults on the streets of Egypt. Her previous job at New York Magazine allowed her access to the city's hottest parties.
But then, at just 29, she was diagnosed with Amyotrophic lateral sclerosis (ALS).
ALS, which is also known as Lou Gehrig's disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, according to the ALS Association.
Motor neurons, which are the nerve cells that control your muscles, degenerate and die. This leads to the loss of voluntary muscle control, which affects movement, speech, swallowing, and eventually, breathing, according to the ALS Association.
In other words, your brain can no longer tell your body what to do.
For Fanous, it means she struggles to walk and speak. She can no longer use her hands to type. She needs a gastrostomy tube and feeding formula to meet her nutritional needs.
During our interview at her parents' home, where she lives, she used a special computer to answer many questions. She typed in the words using her eyes, and then the computer read back her responses aloud.
Everything she can do happens slowly. Very slowly.
"It takes me approximately twice as much time as a healthy person to do something as simple as getting ready in the morning or even just getting out of bed," she said.
The insurance gap
Patients under 65 who are diagnosed with ALS and end-stage renal Disease (kidney failure) are eligible for Medicare, according to federal law.
To help cover out-of-pocket costs that are not covered by Medicare, Ohio requires private health insurance companies to offer supplemental policies, known as Medicare Supplement Insurance or Medigap policies, to senior citizens.
However, Ohio does not require health insurers to offer Medigap policies to Medicare patients who are under 65.
Patients like Fanous.
For Fanous, it has meant switching health insurance plans every year because companies change what they cover and fighting denials for basic services, like her feeding formula, which is her main source of nutrition.
"It would drastically improve my quality of life if I could enroll in a Medigap plan," she said. "I obviously have a limited amount of energy and time. I should be able to spend my time enjoying life and not fighting with an insurance company."
Fanous said that only being able to access Medicare Advantage plans, which offer some additional benefits to Medicare, also limited her ability to try a new treatment.
She wanted to take part in clinical trials at The Ohio State University Wexner Medical Center for Pridopidine, a drug being developed for the treatment of Huntington's disease (HD) and ALS, but was unable to because Ohio State was out-of-network in her plan last year.
"I watch with jealousy as other patients in nearby states as they are able to try experimental treatments that improve their speech and quality of life while I’m simply not given the same opportunities," she said.
Ohio legislation
OH Rep Bride Rose Sweeney (D-Westlake) and OH Rep. Jamie Callender (R-Concord) reintroduced a bill (HB 24)that would require health insurers to offer Medigap policies to Medicare patients under 65 last month.
"It can truly make the difference for individuals in Ohio, who are faced with some of the worst things any of us could even imagine," Rep. Sweeney said during the Ohio House Insurance Committee hearing where it was reintroduced.
Their bill would make Ohio the 18th state to require insurers to offer Medigap plans to patients with ALS and ESRD.
There are currently 17 states, including Kentucky, Virginia, and Pennsylvania, that require insurers to offer Medigap plans to Medicare-eligible patients who are under 65.
The ALS Association said California has also passed protections for ALS patients, but excluded ESRD.
The bill was previously introduced as HB 400 during the previous legislative session. It had three committee hearings but never received a vote.
The Ohio Association of Health Plans and America's Health Insurance Plans (AHIP), which lobbies on behalf of health insurance companies, opposed the bill.
During a committee hearing last fall, Keith Lake, AHIP, Regional Director, State Affairs, said adding patients under 65 to Medigap policies will increase premium cost for seniors.
"Shifting the expense of this expensive population onto seniors with Medigap policies would add a significant burden to this group, many of whom have been paying for this coverage for many years in order to preserve financial peace of mind," Lake said.
He also said actuarial tables show that states with expanded Medigap coverage offered fewer supplemental policies to seniors. News 5 Investigators requested a copy of the information but have not received the data.
An ALS Association spokesperson said when Indiana expanded Medigap coverage to patients with ALS and ESRD, premiums for seniors only went up by about $1 per month.
At the same time, ALS patients under 65 experienced significant drops in their monthly premiums, the spokesperson said.
For example, a 46-year-old patient went from paying a $832 premium to paying a $137 premium after the law took effect, they said.
In the meantime, Sweeney said Ohio patients with ALS and ESRD are left with two bad options.
She said they can spend down their assets so they qualify for Medicaid or forgo care to leave their family with money.
She also said the population of patients who would become eligible is so small that it's unlikely it would have a big impact on seniors' monthly premiums.
There are currently 1,200 ALS patients in Ohio, she said. She said there are 2,672 patients under 65 living with ESRD.
Angelina hopes Ohio passes the legislation this session.
"In a country where we pride ourselves on freedom, shouldn’t that include the freedom to choose our healthcare?" she said. "ALS has already robbed me of so much at a young age. Why must Ohio rob me of the healthcare I deserve?"
HB 24 has yet to be scheduled for a second hearing in the Ohio House Insurance Committee.
