The impetus for the founding of Lymphoma Canada was the lack of specific information for patients pertaining to lymphoma.
“Patients found that when they called organisations such as the Canadian Cancer Society, they only got very broad information and very little that was specifically about lymphoma,” said Robin Markowitz, Chief Executive Officer of Lymphoma Canada. Robin joined Lymphoma Canada in December 2013.
“These patients decided to do something about it to ensure there would be lymphoma information available for future patients,” she said.
The result was the formation of two organisations in 1998: Lymphoma Research Foundation of Canada and the Canadian Lymphoma Foundation which then joined forces in 2000 to become Lymphoma Foundation Canada.
Robin is well versed in understanding the challenges confronting patients with lymphoma.
“I had worked in haematological oncology for eight years prior to joining Lymphoma Canada and had developed relationships with clinicians, nurses and, most importantly, patients, so really understood that lymphoma is not a well-known cancer and doesn’t necessarily follow a linear approach like some others,” she said.
Key Role for Volunteers
With a staff of six, volunteers play a big role in helping Lymphoma Canada reach out to patients with lymphoma across Canada.
“We have hundreds of volunteers, thank goodness, who perform a variety of functions,” Robin said.
Volunteers include lymphoma survivors and current patients who act as spokespeople. Caregivers and loved ones of patients are also among the volunteers. In addition, medical professionals volunteer on Lymphoma Canada’s advisory boards and as presenters at educational events.
“The caregivers and loved ones speak about the positive impact the organisation has had on their journey,” she said.
Volunteers also help out on Lymphoma Canada’s Board of Directors with operational issues such as accounting and public relations. And they play a big role in fundraising.
“We really count on the volunteers in everything we do because we’re such a small staff,” she said.
Challenges Facing Patients
One of the biggest challenges facing patients with lymphoma in Canada is the lack of awareness among primary care physicians, which often leads to a long and frustrating road to diagnosis. Many, when diagnosed, have never even heard of the illness. Other challenges facing many patients with lymphoma in Canada is dealing with a cancer that tends to be of long duration and the funding of new therapies.
“For many patients, it’s a long journey, with highs and lows and the worry about relapse. And then, there are issues with therapy funding that vary from province to province,” said Elizabeth Lye. In Canada, each province makes its own decision on whether to fund a therapy that has received regulatory approval from Health Canada.
Elizabeth joined Lymphoma Canada in March 2015. She is the organisation’s Scientific Advisor and one of her key roles is to act as the liaison between the organisation’s Scientific Advisory Board and the medical community in advancing the clinical mandate of standardising lymphoma care across Canada.
Peer Mentoring Program
While Lymphoma Canada has always had a form of peer mentoring, in December 2014, a more formalised programme was put in place that helps match mentors and mentees based on lymphoma subtype, demographics, gender, age and treatment stage. The programme is for patients with lymphoma, lymphoma survivors as well as caregivers living across Canada.
To become a mentor, lymphoma survivors and caregivers receive training. The training programme is delivered online or in person and provides mentors with the tools and strategies they need to be effective in their role. The Peer Mentoring Program also comprises an evaluation component that is completed by both the mentor and mentee to ensure continued improvement and success.
“At Lymphoma Canada, we have found that over and over again, regardless of how wonderful clinicians and healthcare providers are, talking to someone who has actually been there is completely different,” said Robin.
For example, a peer mentor when she was a mentee was experiencing a bad taste in her mouth following chemotherapy and anyone she asked as to what to do about it was unable to help her. Her mentor told her about a special kind of Popsicle that might help. It did.
“It’s an obscure kind of thing but that’s the kind of sharing that goes on,” she said.
It’s not only patients who are looking for mentors but also caregivers.
“We find a lot of caregivers don’t know if it’s normal for the person they are caring for to not talk about what they may be experiencing. That’s where a mentor can be of real help,” she said.
Since it began only months ago, the Peer Mentoring Program has 12 mentors (nine lymphoma survivors and three caregivers) and 13 mentees (nine patients with lymphoma and four caregivers).
Life Beyond Lymphoma
Launched in November 2014, Life Beyond Lymphoma is an online website that offers patients and caregivers comprehensive resources related to the off-treatment phases of the lymphoma experience. For more information click here.
“It’s really an incredible piece of work and we’re very proud of it as it really speaks to the psychosocial aspect of post-treatment,” said Robin.
Throughout the website, users can examine aspects of their cancer and the impact it has had on their body, their mind and what they may be experiencing as they try to create a new life following treatment.
“It’s quite comprehensive with videos in both English and French that examine issues relating to fertility, sexuality, relationships, re-entering the workforce, emotional difficulties and workplace discrimination,” she said. The videos, along with the unique voice-guided navigation option, help make the experience more interactive and personal.
Those using Life Beyond Lymphoma can also download and print off a guide that is a companion to the online material.
“Haematology nurses also hand out the guide in the clinic and we will send it to any patient or caregiver who contacts us to ask for it,” she said.
The guide is very important as it’s a place where patients or caregivers can keep track of their treatment history and other important information.
National Treatment Guideline for FL
In 2014, Lymphoma Canada, with the help of a steering committee made up of key members of its Scientific Advisory Board, put together the first-ever national guideline for the first-line treatment of follicular lymphoma (FL).
“Until this guideline, there was nothing for Canadian clinicians to reference to see what the experts considered to be the standard of care,” Robin said.
This is important given that new treatments are emerging all the time. Guidelines will be reviewed and updated as new clinical evidence suggests the need for new recommendations.
“We recognise that not all physicians work in centres of excellence and may not have the latest information, nor will they see many patients with lymphoma,” she said.
In addition to the development of the FL guideline, Lymphoma Canada is also developing a FL guideline microsite.
“The microsite will have an algorithm so clinicians can go in, enter their patient’s specifics and find out within minutes what the guideline says without having to read through the entire FL guideline,” she said.
Accompanying these two pieces will be a printed guide that summarises the FL treatment guidelines for patients. “It’s almost finished. It has great imagery and is written so patients can easily understand the information,” she said.
Lymphoma Canada’s goal is to eventually have guidelines developed for 35 different lymphomas. The next one in development is a guideline for chronic lymphocytic leukaemia. This is another initiative being headed up by Elizabeth.
Patient Education Sessions
Over the course of a year, Lymphoma Canada holds 18 educational sessions and, as Canada is a large country, these sessions are only held in two of Canada’s 10 provinces, namely Ontario and Quebec. Two of these sessions are made available as webinars so patients from across the country can participate. Some of these sessions are then archived on the organisation’s website.
The number of attendees varies between 30 and 100 and the length of the sessions also varies from two-hour sessions to all-day conferences.
The sessions are popular and likely speak to a gap in information among patients and caregivers.
Many thanks to you, Robin, and your team for the many wonderful initiatives you are spearheading to help improve the lives of patients with lymphoma as well as the lives of caregivers.
October 29, 2015