June 19, dads across the country will gather with their families to celebrate the holiday in their honor, but for 66-year-old Joe Swider, Father’s Day is when he runs out of money for a medical service that has kept the father of four and grandfather of 11 alive since he was diagnosed with ALS.
In February, FoxNews.com covered the Swiders’ fight to regain the insurance benefit Joe lost when his union legally switched to a plan that no longer covered skilled nursing, which the Swiders and Joe’s nurses say he cannot do without. Since January, the Atco, New Jersey, family has been relying on donations to pay $4,200 every week for the service that helps manage Joe’s incurable neurodegenerative condition.
Prior to the FoxNews.com article, the Swiders said they had enough money to last them through the first week of April, but a subsequent outpouring of support and donations to the family’s GoFundMe page for Joe’s care have helped extend that deadline to Father’s Day.
“I don’t think he has changed his mind that, once the funds run out, he will go on hospice,” Donna Swider, 59, Joe’s wife, told FoxNews.com. “There’s really no other options for him right now. Everything else has been taken off the table.”
ALS, or Lou Gehrig’s disease, has left Joe reliant on a power wheelchair and a ventilator, which means Joe needs around-the-clock care— especially in the instance that a narrow inner tube for his tracheotomy gets plugged up. Donna works full time, but even if the family had the means for her to stay home with Joe, she doesn’t have the professional experience necessary to unplug the tube quickly enough to enable her husband to continue breathing.
“The end result hasn’t changed at all: Either I have the nurses, or I don’t,” Joe told FoxNews.com in May. “And to get the nurses, I either need donations or insurance, and it doesn’t appear that the insurance is available, and if it is, nobody’s found it yet.”
The Swiders took Joe’s union to court after they switched insurance plans, but the their efforts proved futile, and they lost the case. They don’t plan to pursue further legal action so they may put their money toward Joe’s care and prolong his life.
Joe is one of about 10 ALS patients to be featured in an upcoming documentary by Philadelphia-area filmmakers Rob Marcolina and Mikaelyn Austin, who are executive producers at Philly Philms. Marcolina and Austin initially planned to follow two ALS patients for a year, but after they began filming, they decided one of the most pressing issues at hand for ALS patients is the all-too-common insurance battle, like Joe’s.
“We knew there were struggles with insurance, but we had no idea that some people consider the fight with the insurance to be more and worse than the struggle with ALS— that’s when the focus of the documentary shifted,” Marcolina, 47, told FoxNews.com. “We were aghast to find out how bad this aspect of it really is.”
Marcolina and Austin projected that filming will wrap up by the end of the year. The working title of the documentary is “When the Ice Melted: The Real Challenge Beyond the Bucket”— a nod to the ALS Ice Bucket Challenge, the 2014 Internet phenomenon that raised $220 million for ALS research. They hope their film will reignite public interest in ALS.
“They call it universal health care— it’s universal unless you have a terminal disease,” Marcolina said, “so somebody needs to tell their stories.”
Tony Heyl, director of communications and public policy at the greater Philadelphia chapter of the ALS Association, declined to discuss the Swiders’ case in detail due to patient privacy, but he called their story “unique.”
He said ALS patients face a distinct unpredictability factor from the time of their diagnosis and throughout their care. That’s because unlike many other diseases, the cause of ALS remains a mystery to scientists. Only a portion— 10 percent— of diagnoses can be traced to a genetic factor, so the onset of the disease always comes as a shock. Also, every patient’s disease progresses differently, which makes coming up with a one-size-fits-all model for care impossible, Heyl said.
Kristen Colby, of New Castle, Delaware, said her husband, Craig, was diagnosed with ALS at age 33 in October 2008, but only after he was diagnosed with a different condition entirely. It was then that he had to quit his job as a restaurant manager because he kept falling and dropping plates, as his limbs began to lose muscle control. Insurance through Kristen’s job as a flight attendant covered most of his medical expenses, but to pay their mortgage, they had to tap into Craig’s 401(k) until his social security disability (SSDI) benefits kicked in five months after his diagnosis.
“Insurance is a fight,” Kristen, 39, told FoxNews.com. “You have to be willing to put in hours on the phone and be steadfast in the fact that this is something that my husband fell into— [care] is something he deserves. It’s sad that people lose cars and homes, and have utilities shut off before they get something they need.”
When Craig was diagnosed with ALS 14 months after his initial symptoms, they turned to Medicare.
Once an avid golfer and traveler who would hop on an airplane for a day trip just to get away, today, Craig is fully quadriplegic and has been on a ventilator for the past four years. The couple had been trying to have children until Craig got sick and their priorities changed. Kristen now walks dogs locally full time and cares for Craig when he is not receiving the eight to 12 hours of skilled nursing care daily through a Medicaid waiver the state of Delaware has granted them.
Recently, though, Medicaid rules for the number of tracheotomy tubes allotted to patients like Craig changed from six to four per year. The Colbys must spend $300 out of pocket for each of the extra tracheotomies, but Kristen has heard that other patients can pay upwards of $1,200 per device.
“So I guess we’re lucky, if you will, but I’m sure this is the same thing with lots of families going through a terminal illness or injury: An extra $600 a year is not something we have laying around,” she said.
Earlier this year, she and Craig traveled to Washington D.C. to rally for elimination of the five-month waiting period for SSDI benefits to kick in for ALS patients. Advocates like Kristen and Heyl argue that the current waiting period is too long, as ALS patients’ average life expectancy after diagnosis is only two to five years.
Thirty-two-year-old Matt Bellina, another ALS patient to star in the upcoming documentary, can no longer play with his boys James Preston “JP,” 4, and Kip, 2, due to his loss of muscle function. But the U.S. Navy veteran has dedicated his life to being an advocate for ALS research since he was diagnosed with the disease in April 2014.
“Care is super important,” Bellina told FoxNews.com. “We have to be able to keep the people alive who have it, but the other part of it is you have to get them treatment, and it’s so doable. It’s an infinitely solvable problem. I would really like to stress … it’s just a matter of money and a change in the way we regulate [drug development].”
Bellina, who lives in Bucks County, Pennsylvania, receives full insurance coverage for ALS through the Veteran’s Administration (VA) after his 10 years of service in the military. Research suggests veterans are twice as likely as an individual who did not serve in the military to be diagnosed with ALS, but scientists don’t know why.
With the Philadelphia chapter of the ALS Association, Bellina is helping lobby Congress to pass the “Right to Try” bill for ALS patients, which would enable them to try drugs that have already passed safety trials in the pipeline for Food and Drug Administration (FDA) approval.
Bellina said he hopes the documentary raises awareness for the insurance battles ALS patients face, but also for the lack of research dollars to develop a new drug. Although ALS was discovered in the late 1860s, there currently is only one FDA-approved drug for the disease— riluzole— and it comes with several side effects for some patients, and may prolong patients’ lives only up to three months.
He added that, while the ALS Ice Bucket Challenge in 2014 broke records for research dollars raised by the association, data from the Muscular Dystrophy Association suggests the national cost of ALS is upwards of $433 million.
“I would love to say we should all get a blank check, but we can’t afford that as a country,” Bellina said, “but what we can afford is research.”
The Swiders said they’ve looked into enrolling Joe in a clinical trial for ALS but that he’s too far along into his disease to qualify.
“You gotta hope that someday the money all goes somewhere and means something— and they find a cure for this, because it’s a brutal disease,” Joe said.
Donna said her hope for the documentary is that its message reaches lawmakers at the White House who could then take action.
“You write letters, and you never get a response,” Donna said, “and here we are in America, which is a really wealthy country, and things like this should not have to happen.”