Five years ago, cystic fibrosis nearly cost Richard Rebelo his life. Today, he’s finding a way to fight back by raising money to combat the disease.
Rebelo is not far from the final goal for his “Haircut for CF” fundraiser, a way to raise money for Cystic Fibrosis Canada. As of Oct. 29, Rebelo had raised over $10,000 for the foundation, using an exclusively online fundraiser.
Rebelo was born with the disease and was diagnosed with CF at 13 years old. Today, he relies a series of medical treatments - pills, inhalations, physiotherapy - to address the disease.
“Lung problems are the main symptom - thick, sticky mucus that’s always in your lungs. You live every day with a horrible chest cold, basically. It’s very easy to get infections in your lungs. As you get older, the infections, you can’t get rid of them. They’re just always there in your lungs. You daily have to do antibiotic inhalations, you have to do other medicine inhalations to help you cough it out. You have to do physiotherapy,” he said.
“It’s dozens and dozens of pills you’ve got to take - pills to digest your food, pills to keep your vitamin levels where they have to be because almost everyone with cystic fibrosis can’t produce digestive enzymes because the pancrease is damaged.”
The disease affects about one in 2,500 people and can greatly decrease life expectancy. Originally from Strathroy, Ont., Rebelo recalled a family with three young children who were each diagnosed with CF in his hometown.
“I can remember as a kid, there was one other family in my little hometown in Ontario, they happened to have three children who were all younger than me who had cystic fibrosis. A couple of them didn’t even survive to 13 and they were being properly treated. I was not properly treated and I somehow survived beyond 13 and I’m still here today.”
When CF reaches end-stage, the only treatment is a full lung transplant. Rebelo was almost in that boat in Sept. 2015. He was on the transplant list and at one point was on life support waiting for a new lung.
“I came very close to needing one five years ago. Somehow, I pulled through and recovered and got taken back off the transplant list,” he said.
“I was on life support for a week and was very close to being sent to Edmonton for a lung transplant.”
Rebelo has taken part in local CF fundraisers before, including the Flin Flon Kin Club’s mini golf event. His physiotherapy vest was donated to him by the Kin Club. Rebelo was usually one of the top fundraisers for the event. COVID-19 put the kibosh on that this year, both for the event and for Rebelo’s in-person fundraising - as someone with a serious respiratory condition, Rebelo is especially at risk for negative impacts if he is exposed to the disease.
While being unable to raise money in person, Rebelo took his fundraiser online. On Sept. 23 - the five-year anniversary of when his CF hit its worst point - Rebelo kicked off the campaign. The thrust of Rebelo’s campaign is simple - since he’s unable to go out and raise donations and hasn’t had a haircut since COVID-19 hit, he decided to bet his hair. With every $1,000 raised over $5,000, Rebelo has pledged to get the same haircut as a famous figure - Vin Diesel for over $6,000, for example, or Dwayne “The Rock” Johnson for over $10,000, for instance. Each of the figures Rebelo has listed are cue-ball bald.
“Anybody who knows me know that I have a sense of humour, joking around and stuff. If I didn’t joke around or make people laugh, it’s a way to cope with all the other s**t in my head - you live every day with a disease and you’re supposed to be dead already,” he said.
“I’ve always liked to joke around.”
Rebelo has shown a willingness to go the extra mile for donations. This week, after a friend pledged a hefty donation if he dyed his hair hot pink for a week before shaving it all off, Rebelo got the dye out.
“It’s additional fun. There was an additional challenge to the fundraiser - my friend who moved out to Vancouver called me with a proposal,” Rebelo said.
“That was in exchange for a generous gift and a possible donation match from her employer. I took her up on the challenge - Cystic Fibrosis Canada gets a bit of extra money and I have pink hair for a week.”
Part of Rebelo’s activism centres around a new medicine for CF called Trikafta, a combination of three preexisting drugs that has shown some success in treating root causes of the disease. In the US, Trikafta was approved for use last year for patients 12 years and older with certain mutations in a key gene for CF. The Food and Drug Administration estimated in Oct. 2019 that Trikafta could be used by over 90 per cent of people with CF.
“We have medications now available in other countries that actually control the underlying cause of cystic fibrosis, the genetic defect. Part of my fundraiser is that cystic fibrosis patients are fighting with federal government because of proposed regulatory changes to review board medicine pricing that's keeping the manufacturer from bringing the medication to Canada.”
Trikafta is not cheap - a year’s treatment in the US can cost over $300,000.
“I don’t have the spare change in my pocket to pay for it myself,” Rebelo said. Part of Cystic Fibrosis Canada’s campaign for approval of Trikafta is to provide affordable or insurable access to the drug.
“There are a small number of Canadian fibrosis patients on it, but only because only because the manufacturer put in a compassionate care program and is actually supplying it free of charge to people that were very, very sick. There are descriptions of this almost immediately reversing their health. I want to get a chance to take this medication but we’ll need to stop fighting and come to a deal like 20 other countries have.”
Rebelo’s hair will be shaved off Oct. 31. Donations to his campaign can be made at his Facebook page and at cysticfibrosis.ca.
