Moving MPNs Forward

IT HAS BEEN ALMOST a year since 65-year-old Phil Arner had a stem cell transplant after living with myelofibrosis for seven years. For his wife Karen, the experience was life changing.

“I knew that a stem transplant was going to be a difficult process for Phil,” she says. “But I had no idea how physically draining it would be on me. I thought I was prepared, but I wasn’t.”

Karen, who is 64 years old, was in Toronto, Ontario, on September 29, 2018, to share her story at the fourth annual Canadian MPN Conference.

Selected as this year’s MPN Champion in the caregiver category, she says that what kept her moving forward was remembering how important it was to take care of herself. “The advice I would share with other caregivers is to be in tune with yourself,” she says. “Exercise to manage stress, reach out to people who care about you, take any help offered and keep hope alive, no matter how difficult.”

For 74-year-old Edward Pascal, recognized as an MPN Champion in philanthropy, the biggest challenge after he received a polycythemia vera diagnosis in 2004 was lack of information.

“I discovered that the awareness of MPN was very limited. Diagnosis was frequently not available, and neither was access to treatment by a hematologist,” says Pascal, who supported the founding of the MPN clinic at Jewish General Hospital in his hometown of Montreal.

“The importance of patients being their own advocates for MPNs with other patients cannot be understated,” he says. “There is tremendous value in sharing our experiences.”

Pascal, together with the McGill University’s Faculty of Medicine, Continuing Professional Development Office, also helped develop an MPN educational module as part of the oncology courses for practicing physicians, medical students and other health-care professionals to foster awareness of MPNs and improve patient outcomes.

Given Pascal’s passion for education and awareness, it makes perfect sense that he would also be involved in the establishment of the newly formed Canadian MPN Research Foundation.

“The foundation will serve as a platform to discover new treatments for MPN patients, prolonging their lives and hopefully finding a cure,” he says. Pascal isn’t the only one working to improve patient access to MPN expertise. Two years after his wife Elizabeth was diagnosed with myelofibrosis, Tony Comper established the Elizabeth and Tony Comper MPN Program at Toronto’s Princess Margaret Cancer Centre to focus on advancing research and improve outcomes for people with an MPN.

As he accepted his award recognizing him as an MPN Champion in the category of philanthropy, Comper said that his wife, who passed away at the age of 69, received comprehensive care. But he noticed that her doctor, Vikas Gupta, MD, FRCP, FRCPath, had relatively little support because of a lack of resources, which are often allocated to more common diseases.

“Before my wife passed, it was her desired intention that we provide support to allow Vikas and his colleagues to institutionalize the kind of care that he was providing to her and to others,” he said. “My wife’s belief was that one person could make a difference. One person can make a difference. Multiple people can make a difference. It’s all about advocacy and getting the message out. And it’s about all of us providing the support needed to overcome this class of diseases.”

The 2019 MPN Champion Awards will be held on September 21, 2019. For information, email canadianmpnnetwork@gmail.com