BEVERLY — Pete Frates' care for the next year, at least, is covered.
The well-known amyotrophic lateral sclerosis patient who helped the ALS Ice Bucket Challenge become a worldwide phenomenon will have his medical bills covered by a new initiative through the ALS Association.
Pete, 32, has survived for the last five years with the debilitating disease that robs patients of the abilities to walk, talk, eat and move. ALS, also known as Lou Gehrig's disease, attacks nerve cells that control muscles throughout the body. With specialized nursing and many other treatments, Pete's medical bills top $80,000 to $95,000 a month, his parents, Nancy and John, have said.
But that concern is now gone.
The new Pete Frates Home Health Initiative aims to help three to five ALS patients each year in Massachusetts whose insurance won't cover skilled care at home, according to Lynn Aaronson, executive director for the ALS Association Massachusetts Chapter.
In-home care was the No. 1 concern for patients in a survey the national association conducted last year. MassHealth usually covers it, Aaronson said, but a lot of other insurances don't.
"It can literally bankrupt families," she said.
The first year of the initiative is covered — $1 million was raised. Aaronson said the association will take it year by year. It's different from other programs as it will only help a few people — other programs are much more widespread.
"It's a pretty incredible program," she said. "We're hoping for it to go on."
One application has already been sent in. The association has a group of volunteers that will review it -- all information will be kept anonymous.
The initiative was named after Pete because of the awareness he brought to the disease. Aaronson said people didn't know what ALS was before.
"He brought about such an incredible awareness and funds for not only our chapter, but for the whole country that we wanted to name it in his honor," she said.
John said the family hasn't received bills from the nursing company lately and it's alleviated a lot of stress. The family had been considering a number of options, including liquidating assets, to continue Pete's care.
"It was so successful and these incredible philanthropists did such a good job," John said.
Continuing the fight
But a false report Monday morning claiming Pete had died caused stress and some panic for members of his family.
"All of a sudden someone was saying 'So sorry for your loss,'" John said. His daughter called saying that she heard it on the radio.
Pete had been admitted Sunday morning at Mass General Hospital after returning home from an "episode" last week, his dad said. John attempted to call the nurse on duty with Pete, but her phone wasn't on.
"Now panic is starting to creep in a little bit," he said. But a nursing supervisor luckily called back soon afterward and they spoke of Pete's status.
"It turned out that it was punctuated by the comic relief that Pete provided us," John said.
Pete decided to dispel the rumors himself on social media. He posted a video to Twitter of himself lying in a hospital bed while listening to Pearl Jam's "Alive." He captioned the post, "In the words of my friend Ed," referring to Eddie Vedder, Pearl Jam's lead singer.
in the words of my friend ed pic.twitter.com/g7iIR4rfmT— Pete Frates (@PeteFrates3) July 3, 2017
Nancy also tweeted that her son was "resting comfortably" at MGH.
"It was awful for everybody," John said, adding that Nancy, Pete's wife Julie, and their young daughter Lucy quickly made their way to the hospital.
Pete has an "ever-present" infection around his tracheostomy site. A tracheostomy allows for use of a breathing machine by creating a hole in the windpipe. He has been on a nebulizer 28 days on, 28 days off to fight the infection, but he's becoming immune to the antibiotics he's been on and doctors need to find a new combination.
While on the nebulizer, Pete's wife, Julie, must wear a gas mask because being around it could be detrimental to her health as someone who's young and of child-bearing age. Despite the concern and having to wear the mask, she's with her husband.
"That just shows the love in the relationship they have," John said.
Though it was a difficult situation, John said the false reports helped fuel Pete's ego and sense of humor, which haven't been taken away by the disease.
"He always had this awareness and observation," John said. "We've been made so painfully aware of how much he means to the ALS community."
Many shy away from attention when they're battling the disease, but Pete doesn't. John attributed it to his son's sports mentality — Pete played baseball for Boston College.
"What we're seeing is Pete, in the midst of this absolutely devastating battle, is his personal strength and resolve," John said. "I'm very proud to be his dad and everything that he's done in the universe."
Arianna MacNeill can be reached at 978-338-2527 or at email@example.com. Follow her on Twitter at @SN_AMacNeill.