BEVERLY — He helped spark the ALS Ice Bucket Challenge, which raised over $100 million to help find treatment and a cure for the debilitating disease. But now, Pete Frates and his family say the money they've raised for his own care is running out.
It costs between $80,000 and $95,000 per month to keep Pete alive. It's worth every penny, his parents, John and Nancy, say.
Pete Frates, 32, has survived living with amyotrophic lateral sclerosis for the past five years. During that time, he's been robbed of the ability to walk, talk and move on his own. Also known as Lou Gehrig's disease, ALS is a progressive disease that attacks nerve cells that control muscles throughout the body.
The Frateses have hosted a variety of fundraisers over the years, including polar plunges and fashion shows, to raise money for Pete's care. But Nancy and John say it's no longer enough.
"The funding source we've always relied on has dried up," John said Tuesday. "The hole in the bucket is so big ... it's something we can't keep up with."
To help Pete, as well as other families struggling with piles of bills associated with caring for an ALS patient, the Frates family is working with the ALS Association to create a home health care initiative. John said the initiative will kick off in Boston early next month.
In an effort to attract corporate and private donations for the program, Nancy and John have partnered with a former Boston College classmate of theirs — Robert Griffin, head of the U.S. capital markets and New England area president for the commercial real estate agency Newmark Grubb Knight Frank.
There are a variety of treatments an ALS patient needs just to get by each day, Nancy said.
Pete needs a nurse 24/7, said Nancy, noting that her son "lives on all machines." That level of care costs $100 an hour, and isn't covered by insurance unless Pete was on Medicaid.
Having the nurse available is just one of many costs. After Pete developed pneumonia last summer — a common ailment among ALS patients — his pulmonologist put him on a nebulizer antibiotic. He's been on it ever since, Nancy said, 28 days on, 28 days off.
But the medication isn't covered by Medicare if it's administered at home. Instead, the Frates have been paying $7,000 per 28-day-stretch.
While Pete decided to go on a ventilator two and a half years ago because he could no longer breathe on his own, many ALS patients opt not to. In fact, Nancy said, between 90 and 95 percent of U.S. ALS patients don't, and most of them die after a few months.
"The No. 1 (reason) is they don't want to put the financial burden on their family," she said. "Unfortunately the way most ALS patients die, they die from lack of breath."
Staying alive sometimes means finding creative ways to pay for care. To be eligible for Medicaid, an individual has to fall below the poverty line. So some patients liquidate their assets, Nancy said, or even get divorced as a quick way to drain finances.
Pete could also be placed in a nursing home, she said, but he wouldn't receive the same level of care there. And it's because of his at-home treatment, doctors said, that he's doing so well.
"For a young guy with a family, it's not the right mix," John said.
This isn't the case everywhere, though.
A new drug created in Japan is found to be 33 percent effective in slowing down ALS symptoms. There, home health care is covered 100 percent, Nancy said.
"I just feel like terminal patients in our country are not treated with the respect they should be," she said. "The system is unfortunately set up for our terminal patients to pass away."
It's difficult for the family to keep telling their story, John said, noting that they're "bearing our souls." But the Frateses just want to keep their son alive.
"From our family's perspective, we want to keep Pete around for as long as we can have Pete around," Nancy said.
Arianna MacNeill can be reached at 978-338-2527 or at email@example.com. Follow her on Twitter at @SN_AMacNeill.