She was diagnosed with Stage 4 cancer on Mother’s Day. Now, 15 years later, this mom is still fighting.

Her experience fighting for access to a specific medicine motivated her to find a way to improve the odds for other melanoma patients

Kathleen Barnard’s harrowing health journey began when she consulted a doctor about a lump on her arm. The news was positive: it was nothing but fatty tissue.

But a visit to a plastic surgeon to remove the lump led to a completely different diagnosis.

“They took out the first lump and said it was benign, then they took out a second one. A week later, I got a call.”

It was on Mother’s Day in 2003 that she was told she had Stage 4 metastatic melanoma, and it would be a good idea to put her affairs in order. “Then they gave me a brochure on how not to get it,” she says.

She took to the internet, and soon discovered there were very few current statistics. “I knew I was in trouble. That’s when I panicked.”

Barnard began a grueling round of chemotherapy.. “I had to inject myself for a year “ she says.. “I lost my hair, weighed 80 lbs. and was unable to get out of bed, but I did it.”

Within six months, the cancer had spread to her lung. In desperation, her son phoned a doctor in the United States to find out how to get an innovative immuno-oncology treatment to Canada. “They said if we can find a centre in Canada, and had $40,000, they could make it work,” Barnard explains. “We decided we would do whatever was needed to move forward.” Eventually, Barnard was lucky enough to join a clinical trial.

Her experience fighting for access to a specific medicine motivated her to find a way to improve the odds for other melanoma patients. In 2006, Barnard established the Save Your Skin Foundation, a non-profit charity that works with the Canadian government and professional stakeholders to change federal and provincial policy, and write patient policy guidelines. The Foundation also provides patients with counselling support and fund raising for treatment.

When Barnard’s cancer returned in 2007, there were more new-generation medicines on the scene. This time, she went through a treatment regimen in Edmonton, flying in every 21 days from Vancouver for infusions. “After four treatments, the cancer was gone, making me the longest survivor of Stage 4 melanoma.”

In the early stages, part of the Foundation’s efforts included flying patients to the U.S. for innovative treatments. Barnard realized, however, that patients needing those treatments should have the option to stay within their own communities. “Many of these patients were the same age as my kids. I didn’t want to move them out of the province. Patients facing cancer treatment need to be with their own families and support systems.” To alleviate the travel burden, she has spent considerable time meeting with various stakeholders, including government, healthcare and pharmaceutical companies, to improve access at a local level.

While Barnard’s efforts have revolved around improving access, she says treatment options for patients have also continued to improve and, in the last 10 years, medical breakthroughs for melanoma have been moving forward at a positive pace. But the more innovative the medicine, the more expensive it is to produce, and these higher costs are slowing down approvals and access, she says. “

The government is saying they don't have the budget to pay for them - and they don't. Private payers used to step up generally. Now they're not. We have drugs today, and doctors are saying to their patients, sorry, you can't have them

Kathleen Barnard

While Barnard is cancer free today, like any cancer patient, she is never complacent. “It’s an emotional moment every time I go through a scan because I mentally prepare myself for the worst. When the news is good, which it has been up to now, it’s an exhilarating feeling. I believe everyone should have the same access to innovative medicines that I did. As the longest survivor of Stage 4 melanoma, I’m living proof of how important that access can be.”

All treatment options have benefits and risks which vary by individual. Patients should consult their doctor to determine the most appropriate option.


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