‘They Made It a Living Hell’

One woman has called out the institutions behind Medicare and Social Security—going as far as to say the two government programs are designed to make you die.

Both Medicare and Social Security are federal programs to support those aged 65 and older, as well as those who are disabled and unable to work. But an Ohio woman is calling out both programs as difficult to navigate for those who rely on them for medical care.

Hollie Orr, a 43-year-old from Warren, Ohio, who operates the TikTok account AnnoyedWithThisPlanet, took to the social media platform to share her frustrations with the systems.

“Anyone that is disabled is well aware of this,” Orr said in her video. “The system is set up, they want you to be unalive. They don’t want you to live. They don’t want you to thrive and survive.

If you are sick, they do everything in their power to get you out of the system.”

Orr, who stopped working when she was 39, went on to say the systems do not want to pay you back for the money you put into Social Security since you began working.

Orr has Stiff Person Syndrome, a central nervous system disorder that causes progressive muscle stiffness and spasms and thus makes work difficult.

“It’s a compassionate disorder,” Orr said. “It gets immediate approval because it’s pretty much ruined your life.”

“Simple things like bathing, dressing, brushing my hair are a daily chore,” she told Newsweek.

Problems When Husband Switched Jobs

The Ohio woman said after her husband got a different job with different insurance coverage, she opted to get back on Medicare Part B, which typically covers medically necessary and preventive services, clinical research and ambulance services.

“They made it a living hell for me to get back on Social Security Part B,” Orr said of her experience.

She filled out a form online, which she was instructed to do so by phone call. Once she ended up at the Social Security office, however, Orr was told she needed a form filled out by her husband’s previous employer.

“I’m like, but that’s not what it says online,” she said. “It doesn’t provide that information.”

The situation was exacerbated by the requirement to contact her husband’s past employer, with Orr noting that most employees cut ties with companies after they leave.

“Thankfully, my husband left on good terms,” she shared, but added the process of mailing a form to the employer, getting it back and then mailing it once again to the Social Security office can quickly become an ordeal.

“I have medical procedures all next week,” Orr said. “I have to have a heart scan, possible heart catheterization.”

While Orr said she figured out the necessary steps to make this switch herself, she acknowledged many people on disability are not capable of this.

“They make it difficult because they intentionally want you to just give up,” she said at the conclusion of her video. “Because if I don’t get on this Medicare, then I’m not going to have a backup for my medications, and I get infusions to essentially save my life.”

“I have to be back on Medicare for my insurance, and they are making it literally impossible. It’s hard for me physically, mentally, intellectually to do it, and I’m in a better boat I think than a lot of other people.”

’20 Different Answers’

In a conversation with Newsweek, Orr expanded on her frustrations.

“To this day, I don’t know if my infusions are covered by Medicare,” she said in an interview. “I’ve been given 20 different answers, and I personally don’t think anyone knows.”

This causes a lack of clarity in choosing between Medicare and an Advantage plan, she said. While she knows she needs Part D for medications, she said she doesn’t qualify because she receives Social Security Disability Insurance.

Orr says she pays around $500 a month for medication to manage blood clots, which are a complication of her Stiff Person Syndrome.

Throughout the years, Orr has heard many different things from Medicare agents, and she ended up paying for it. In her first year, she had to pay $24,000 for infusion treatments despite being told they were fully covered. So, she went back on her husband’s insurance.

Still, after her husband’s insurance changed due to job switch, she found the process to get back on Medicare to be a struggle over time.

“Every time that I think about those who are as sick as me and just don’t have the resources or the will to navigate the system, it breaks my heart,” Orr told Newsweek. “There are times that I’ve wanted to throw my hands up, but luckily I take a nap and try again the next day with my phone calls and paperwork.”

A Larger Problem

Orr’s difficulties in getting approved reflect a potentially larger struggle being felt across the country.

According to the Center for Retirement Research at Boston College (CRRC), the number of Americans applying for disability had tripled over 24 years to around 9 million people in the mid 2010s. But that started to level off in 2015, as Americans noted additional hurdles to get the necessary coverage.

In 2010, administrative law judges who handle disability appeals were retrained to have more consistency within the appeals process. For many Americans, that made it more difficult to enter the program, the CRRC found.

There are several requirements that must be met to be covered for disability through Social Security. Generally, you must have worked in jobs covered by Social Security, contributing to the system through your past payroll taxes.

You also must have a medical condition that fits Social Security’s definition of disability and be unable to work for a year or more due to that disability.

According to Christopher Fong, the chief executive officer and a Medicare insurance specialist at Smile Insurance Group, some Americans’ frustrations lie with the systems’ process to get Medicare under disability.

“The original intent for both Medicare and Social Security is to help our older citizens with much needed care and financial support,” Fong told Newsweek.

“Prior to both systems many older people would die earlier because they could no longer work due to age and health which then they would no longer have the ability to pay for health insurance or healthcare. The programs were then expanded to include disabled individuals who were struggling with the same issues as our older population.”

Fong added that there’s one application to fill out and one form to fill out if you want to avoid Medicare Part B penalties for no insurance coverage, but it’s not necessary.

“The devil is in the details,” Fong said.

Growing Medicare Frustrations

Orr is far from the only person who’s struggled to get properly covered and care for under Medicare.

In fact, it’s a common problem for those with disabilities covered under Medicare to report frustrations with their experience.

A yearly KFF Survey of Consumer Experiences with Health Insurance found that while 92 percent of those over age 65, gave positive ratings of their Medicare coverage, but only 79 percent of those under 65 with disabilities did.

They were also more likely to report worse access to care, more cost concerns, and lower satisfaction with care, KFF found.

“While Medicare provides essential health coverage, it may have limitations in coverage for certain services, treatments or equipment crucial for younger individuals with disabilities,” Rhianna Jones, a registered nurse at CanXida, told Newsweek. “Gaps in coverage for rehabilitative services, long-term care, mental health support, or specific therapies can impact their health care experiences.”

Roughly 7.7 million Americans under age 65 get Medicare, making up 12 percent of all Medicare recipients.

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