Living with a rare chronic disease while also managing an employer-sponsored benefits plan provides Chris MacLeod with a unique perspective.

During a session supported by Vertex Pharmaceuticals at Benefits Canada’s 2022 Face to Face Drug Plan Management Forum in Toronto in December, MacLeod, the founding partner at Cambridge LLP, said he was diagnosed with cystic fibrosis at the age of two and given a life expectancy of age four. Over the years, with the growth of disease knowledge and the launch of innovative medicines, his life expectancy grew to six years. Today, it’s more than 50 years.

“I’ve been very lucky to ride the curve and was always a couple of years ahead of the life expectancy ratio.”

Read: Cystic fibrosis among key diseases affecting companies’ bottom lines

Any medication MacLeod required was available through provincial formularies. Until 2012, when his lung function fell below 30 per cent, he was on four litres of oxygen and in the hospital for four months. As he was being added to the pre-transplant program for a heart and lung, his doctor told him about a new drug that was recently approved in the U.S., though it wasn’t yet available in Canada.

Since MacLeod’s situation was so dire, he was able to receive the drug from the pharmaceutical company on compassionate grounds through Health Canada’s special access program. Within 10 days, his lung function reached 60 per cent, while his oxygen was reduced and he was able to return to work. Fortunately, when the drug was approved by Health Canada, his benefits plan covered it within about 30 days. Other people with cystic fibrosis who didn’t have a group benefits plan had a two-year fight to get the treatment, he added.

He can also take the plan sponsor perspective because he handles the benefits plan for his small, 30-person law firm. To attract and retain staff in a competitive labour market, the organization felt a robust benefits plan was key. It created a plan design that ensures staff have access to new medications as soon as they’re approved in Canada.

Read: Sounding Board: How employers can better support employees with rare diseases

Macleod also advocates for bringing life-changing cystic fibrosis medications to Canada, noting some drugs may be available in the U.S. or Europe, but not in Canada. “If a drug is not launched in Canada, even if you have the best group health benefits plan on earth, your employees aren’t getting it.”

Sharing an example of a novel new cystic fibrosis therapy that was available in the U.S. for months before it was approved in Canada, he said the review and negotiation process was very lengthy for public coverage. However, once it was approved by Health Canada, “if you had a robust group benefits plan, it should be covered.”

Macleod also said he isn’t a fan of the private drug plan industry looking to the Canadian Agency for Drugs and Technologies’ recommendations to inform their formulary decisions. “I don’t think insurers should be looking to CADTH as a benchmark.”

The agency is meant to inform provincial public payers across provinces, not private payers, he said, so when payers reference its decisions, “it can create a chilling effect on drug access through private plans.”

Read more coverage of the 2022 Face to Face Drug Plan Management Forum.