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.”

 

 

Get local stories you won't find anywhere else right to your inbox.
Sign up here

Just Posted

(Black Press Media file photo)
One man injured, Victoria police seek more suspects afer Centennial Square brawl

Police were called around 4:30 p.m. for reports of multiple people fighting

Saanich firefighters were called out to Hartland Road on Oct. 21 to help transport a mountain biker with neck and back injuries out of the woods. (Black Press Media file photo)
Patient with neck, back injuries rescued from Saanich bike trails

Saanich firefighters called in to help paramedics with transportation off Mount Work

Oulette the Great Horned owl was spotted alive just days after her mate, Ollie, was found dead from suspected rat poisoning on Oct. 17. (Photo by Cheryl Redhead)
Great Horned owl mate found alive in Cuthbert Holmes Park

Oulette spotted in tree above where male Ollie died of suspected poisoning

Saanich Police are investigating a broken window at the Greater Victoria School District office. (Devon Bidal/News Staff)
Saanich police suspect slingshot used to break window at SD61 office

Police find ball- bearing, or pellet, below broken window at school board

One of the squirrels who ended up having their tails amputated after getting them stuck together with tree sap. (Facebook/Wild ARC)
Sibling squirrels in recovery after sap situation leads to tail amputation

BC SPCA Wild ARC says squirrels will be released back into wild, fifth sibling was euthanized

Advance polls are open from Oct. 15 to 21 with election day on Oct. 24. (Black Press Media file photo)
Jordan Jay Ward is wanted on a Canada-wide warrant for two counts of manslaughter. Photo supplied
Wanted man from Calgary may be on Vancouver Island

Jordan Jay Ward is wanted on a Canada-wide warrant for two counts of manslaughter

FILE – A voting package for the 2018 electoral reform referendum. Vote-by-mail packages for the 2020 provincial election will look similar, according to information provided by Elections BC. (Katya Slepian - Black Press Media)
POLL: Have you voted yet?

As election day quickly approaches, hundreds of thousands of British Columbians have… Continue reading

More and more electric cars are on the road, but one Chevy Bolt owner was shocked to see how much his BC Hydro bill skyrocketed once he started charging the vehicle. (Black Press file photo)
Lower Mainland man sees significant spike in BC Hydro bill after buying electrical vehicle

An increase should be expected, but Brian Chwiendacz experienced a 200-plus per cent hike

Environment Canada has issued a snowfall advisory for parts of Vancouver Island for Thursday and Friday.(File photo)
Snowfall expected in parts of Vancouver Island this week

Environment Canada has issued a snowfall advisory for north, east and inland Vancouver Island

The Cowichan Steelheads’ Jesus Martinez (left) and the Cowichan 49ers’ Daryl Rodgers chase down the ball during Saturday night’s all-Cowichan clash at the Sherman Road turf. (Kevin Rothbauer/Citizen)
Cowichan masters derby takes unexpected turn with broken leg

Soccer community comes together in midst of battle

Larry Whetstone is concerned about the condition of Jeffries Road, where he has lived for 30 years. (Robert Barron/Citizen)
Poor condition of rural road in Cowichan has resident fed up

Transportation Ministry says repair plan under development

Vancouver police reactivated the search for Jordan Naterer Thursday Oct. 22. Photo courtesy of VPD.
Mom of missing Manning Park hiker believes her son is waiting to come home

‘He’s going to come out of a helicopter and say ‘what took you so long?”

Most Read