While a Mission Hills couple faces the harsh realities caused by an aggressive brain tumor, they are calling on Congress to waive a waiting period for terminal patients needing Social Security disability benefits.
Jim and Laura Mytinger recently started a petition on Change.org to push Congress to waive the six-month waiting period for patients like Jim. They believe this could provide patients with much-needed funds to supplement income, especially at a time when medical bills can rack up quickly.
Jim has glioblastoma, a rapidly growing brain tumor. It’s the same disease that John McCain had. It started in March, when Jim felt cold-like symptoms that worsened to the point that Laura thought her husband was having a heart attack or stroke. One time, he got lost coming home from work — the two are both realtors with Keller Williams Key Partners.
A few days later, Jim was diagnosed with glioblastoma and scheduled for his first surgery right away.
The Mytingers have talked to Rep. Sharice Davids’s office about their situation. They said staff have told the couple that few people ask about waiving the waiting period.
“It would really help families,” Laura said. “Social Security already has the system in place; they just have to release the checks earlier.”
Johanna Warshaw with Rep. Davids’s office said the congresswoman is “deeply concerned about their situation, and she has been looking for legislative fixes to this problem.”
Davids is a co-sponsor of H.R. 1407, the ALS Disability Insurance Access Act, which would eliminate the five-month waiting period for Social Security Disability Insurance for patients with amyotrophic lateral sclerosis (ALS).
Warshaw noted that Davids is also “looking closely at a handful of other bills that would address this issue,” such as H.R. 142, the Social Security Disability Fairness Act of 2019, which would have a phase-in payment for anyone with a terminal disease.
‘The healthcare thing scares me to death’
So far, Jim has had three brain surgeries and multiple rounds of radiation chemo. Despite his treatments, he will live with the growth for the rest of his life, until it becomes unmanageable or if doctors find a cure.
“The tumor never dies; that’s the sad part,” Laura said. “Even with the surgeries, it spreads out, like legs. That’s what makes it deadly. You can’t get it out. He’s got the most aggressive of the aggressive glioblastomas.”
Laura said they’re “blessed” to have a supportive group of clients helping them while Jim is fighting cancer. And the “Mighty Mytingers,” as they affectionately call themselves, said they’ve been lucky to have professionals in the Kansas City area to take care of him, including Jennifer Cheng, a neurosurgeon, and Michael Salacz, their oncologist, at the University of Kansas Health System.
Jim said his wife as his caregiver has given him the most important support system throughout all of this.
“The main thing that helps get you through it is the humor,” Jim said, citing his belief in staying positive.
Nonetheless, one of the hardest parts for the Mytingers now is finding a way to pay for everything — bills still need to get paid, they still need to get food on the table, and now they’ve got medical bills from the multiple surgeries and treatments.
“The healthcare thing scares me to death,” Laura said. “Because I don’t know what kind of insurance we’ll have next year. I don’t know, if we get any insurance, what those deductibles, those monthly premiums, are all going to be.”
When they applied for Social Security disability benefits, they realized they wouldn’t see any of that money until after six months had passed. But with their experience in real estate, they know that money can get tight very quickly — houses can be foreclosed in two months.
Laura called it a “domino” effect of healthcare as medical expenses continue to rack up — It starts with a personal deductible and out-of-pocket expenses. When those become too much, terminally ill patients can’t afford their mortgage, can’t afford groceries or prescriptions or utility bills.
As independent contractors, the couple lives off what they sell. But because Jim can’t work during treatments, he hasn’t been able to make any money.
Fortunately for them, they’re “doing OK,” Laura said. But other people facing terminal illness may not be so lucky. That’s why they started this petition. To date, more than 600 people have signed it.
“I’m hoping that we can gain some traction on Change.org,” Laura said. “I’ve never done anything like this before, but it could benefit a lot of people and help a lot of families throughout the country. But it takes an act of Congress to do it.”