Victoria resident Nigel Deacon was diagnosed with metastatic melanoma in 2012.

Foundation calling for access to better cancer treatments

When Nigel Deacon was diagnosed with a life-changing cancer, he didn’t see it as a death sentence, but a chance to do new things.

When Nigel Deacon was diagnosed with a life-changing cancer, he didn’t see it as a death sentence, but a chance to do things he’s never done before.

The Victoria resident was diagnosed with an ocular melanoma at the back of his right eye in 2010 and shortly after received radiation. However, two years later, Deacon discovered the cancer had spread to his abdomen and liver. He was given months to live.

“I was absolutely devastated and assumed that I only had a couple of months to get my life sorted and get everything in order,” Deacon said. “It was a truly horrible experience. It changes you. You never get back to the way you were.”

In the fall of 2012 and 2013, Deacon received four infusions of a drug called Yervoy and while he admits the drug didn’t cure his cancer, it stopped the tumours from growing and allowed him to continue on with his life.

After the second round of infusions in 2013, Deacon decided to run one of the toughest ultra marathon in the world in South Africa, which he completed in 10 hours and 23 minutes. A year later he went on to run another ultra marathon in South Africa, with his son and running partners — all things he wouldn’t have been able to do without the drug.

“Running an ultra marathon is a very special lifetime experience. It’s one of those experiences I’ve had and I might not have done things like that had my life been put in so much danger by this rapid cancer,” said the now 68-year-old.

However, many other melanoma patients are not so lucky.

Kathy Barnard, founder of the Save Your Skin Foundation that supports people touched by cancer through programs, outreach, education and awareness of skin cancer, said many patients with melanoma are finding it difficult to get access to the drugs needed for treatment. Now the foundation is calling on provincial cancer agencies, government and drug manufacturers to give patients better access and funding to all forms of treatments.

Once a patient is diagnosed with melanoma, a doctor will set out at treatment plan, which, depending on the type of cancer, begins with the drug Keytruda. However, if a patient is unresponsive to the drug, they are not given access to other immuno-oncology agents such as Opdivo and Yervoy.

In order to seek further treatment, patients must either enter a clinical trial or pay out of pocket for the treatments.

“We need to start finding innovative solutions to these costs pricing issues that we’re having because the health care system can’t sustain the price of these drugs, but at the same time, we can’t refuse to have these drugs available to patients to let them die,” said foundation executive director Sabrina Hanna.

Barnard has seen the benefits of drugs such as Yervoy firsthand. She was diagnosed with metastatic melanoma in 2005 and was given six months to live. After failing on previous treatments, she found a clinical trial in Alberta that administered the drug.

“This is unacceptable to us that you can live or die in Canada really by a postal code or the cost of a drug. To me, as a patient, it just doesn’t seem right,” Barnard said. “We pride ourselves on our health care system in the country and I want to pride myself on the health care system, but right now I’m disillusioned.”

According to Dr. Malcolm Moore, president of the B.C. Cancer Agency, the agency has been meeting with the Canadian Association of Provincial Cancer Agencies and other provincial leads to discuss unification of funding decisions for new drugs. However, in the case of Yervoy, provinces made the decision not to fund it due to lack of scientific evidence to support its use.

“When new scientific evidence is available about the use of ipilimumab (Yervoy), its use will reassessed,” Moore said in an emailed statement.

“The BC Cancer Agency endeavours to be flexible and compassionate with patients and families in looking at treatment options while balancing the need to ensure patient safety and efficacy. Our evidence-based cancer treatment protocols ensure the highest standard of care.”

In the meantime, Deacon hopes to continue receiving Yervoy infusions through other private funding sources — one infusion every three months — which he estimates would cost him $120,000 annually.

“If I can’t get it (the drug), I know my cancer will proceed,” he said. “Generally, in Canada, we’re very good to people who are sick, well not giving them treatment is not very good, is it? . . . It’s life and death. This drug protects me. Without it, I’m not protected.”