By Natalie Richardson, for National Post: Therapeutic Spotlight on Immuno-oncology, October 29, 2018
Current studies are proving that melanoma shows a phenomenal response rate to immunotherapies and targeted therapies, yet these treatments are restricted to certain stage IV patients – hit and miss. Across Canada, cancer patients are being restricted from access to innovative new treatments due to static recommendations made by health technology assessment agencies, followed by provinces. These limitations are outdated, and devastating.
Many patients all over the country have had to start GoFundMe pages or re-mortgage their homes to find alternative ways to pay for these treatments, which are often not approved based on the cost of the drugs. It is difficult for these patients and their families to understand how they are made to feel that their lives are not worth the cost of a life-saving therapy.
To read the full article, please click HERE.
National Post, Therapeutic Spotlight on Immuno-oncology, September 26, 2018
In the past, a diagnosis of metastatic melanoma was often a death sentence. While chemotherapy remains an important weapon in the fight against cancer, scientists are finding new ways to identify and destroy cancer cells. Some patients see better outcomes with immunotherapy treatments that boost the body’s own ability to fight disease. Others have access to breakthrough targeted therapies that have become available in recent years.
Recent combinations of targeted therapies have proven effective in shrinking tumours and controlling the spread of disease. “In the last three years, all of the innovative medicines are coming fast and furious into the melanoma space,” notes Kathy Barnard, founder of Canada’s Save Your Skin Foundation. “It is a gamechanger for us. We always tell everybody that melanoma used to be at the back of the bus. Now we are literally driving the bus.”
To read the full article, please click HERE.
Natalie Richardson of Save Your Skin Foundation, was interviewed by ‘Powerful by Nature,’ a radio show led by participants in Jessie’s Community Education Program, on Radio Regent. After sharing her personal experience with metastatic melanoma and her subsequent treatments, Natalie passed along valuable tips for maintaining sun safety and skin health. To listen to the interview excerpt, please click HERE
May 2, 2018: Roger Deckert and Diane Whitehouse from the Save Your Skin Foundation join Global News Morning Calgary to talk about the risks of skin cancer and how to prevent it. To watch the interview, please click here.
May 4, 2018: Skin cancer is on the rise in Canada, due in part to UV ray exposure both from the sun and from man-made sources like tanning beds. Cross Cancer Institute oncologist Dr. John Walker and patient Roger Deckert joined Global News Morning Edmonton with some warnings signs and prevention tips. To watch the interview, please click here.
Financial Post, January 15, 2018
Even when a new, potentially life-saving medicine does make it through the reimbursement process, there are restrictions that could limit options for patients who need more than one medication. “Targeted combinations are becoming the new standard in treating cancer,” Dr. Kuruvilla says. “Usually chemotherapy regimens are given in combinations of two to five drugs depending on the disease and setting, but with novel targeted drugs come much bigger price tags, with some treatment courses easily costing $100,000.” This means, he adds, that even when a reimbursement review shows a medicine has merit, the conclusion tends to be that the benefit doesn’t merit the increase in cost— and the patients are the ones who lose out.
Louise Binder, health policy consultant with Save Your Skin Foundation, says things are only getting worse. “The reality for many cancer patients is that combinations of drugs work best, yet the government will only pay for one and not the other.” To read the article click HERE
Her experience fighting for access to a specific medicine motivated her to find a way to improve the odds for other melanoma patients
National Post, January 13, 2018
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 counseling support and fund raising for treatment. 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. To read the article click HERE
Mike Allan is a Stage 4 melanoma skin cancer survivor. Allan believes that there is a possibility that his melanoma might return. He feels that the Yervoy/ipilimumab treatment would be his best option. But, he said, obtaining funding for this drug in B.C. has become next to impossible since 2016. The cost for this drug can be prohibitively expensive. According to the Pan-Canadian Drug Oncology Review website, the list price for a 200 mg vial of the drug is $23,200.
Kathy Barnard, founder of the Save Your Skin Foundation, an advocacy organization focused upon melanoma treatment, said that prior to 2016, Yervoy/ipilimumab was one of many funded treatment options for Canadians suffering from the disease. To read the article click HERE
Russell woman forced to raise thousands for melanoma drug that arrived too late to help her
Ottawa Citizen, December 12, 2017
Pol, 51, and her family had to raise tens of thousands of dollars before she could begin taking an expensive combination of two immunotherapy drugs that her oncologist hoped might extend her life, as it has the lives of some melanoma patients. But the Ontario government does not pay for the drug combination, although it has been approved by Health Canada. Raising money for the drugs delayed her treatment. By the time Pol started taking them, it was too late.
The drugs available to treat advanced melanoma — pembrolizumab (Keytruda), nivolumab (Opdivo) and ipilimumabI (Yervoy) — are forms of immunotherapy that use the patient’s immune systems to attack specific cells. They are part of a revolution in cancer treatment that has extended the lives of many melanoma patients. To read the article click HERE
In 2012, ipilimumab, the first-generation checkpoint inhibitor, was approved and now 25 per cent of patients who have not undergone other treatment but receive ipilimumab experience long-term survival, compared with a historical survival of five to 10 per cent. With newer therapies, pembrolizumab and nivolumab, survival is even superior to ipilimumab. They are generally used as initial treatments in metastatic melanoma. However, ipilimumab is still effective in some patients who have failed newer therapies.
So why, one year ago, did all public drug plans suddenly and without consultation with provincial experts defund ipilimumab? Canada is the only western country to defund this therapy. To read the article click HERE
About 10 months after she was diagnosed at 37 with melanoma, (Natalie) Richardson began volunteering for the Save Your Skin Foundation, a non-profit advocacy organization founded by Vancouver melanoma survivor Kathleen Barnard. After starting out writing blogs to connect with other survivors, Richardson became a full-time project co-ordinator last fall.
She stresses there’s no such thing as a “safe tan” or “just skin cancer,” the most commonly diagnosed form of cancer in North America. To read the full article click HERE
Louise Binder speaks in the “Patient Access to Medication” campaign launched June 14, 2017. This was published within the Maclean’s Canada 150 Special Issue to a readership of 1.4 million Canadians, and will be on newsstands for a month.
The campaign sends a powerful message to Canadians – despite being an innovative nation, many patients in Canada still struggle to access life-saving medications. By uniting industry-leading experts and patients, we are encouraging sustainable access to medication and a collaborative path forward. To read the article click HERE
Kathleen Barnard, President and Founder of Save Your Skin Foundation, was interviewed by Michelle Elliot on the CBC Almanac podcast. After an informative detailing of prevention and detection of melanoma and non-melanoma skin cancers with Dr. Marcie Ulmer, Dermatologist and Clinical Instructor of Dermatology at UBC, Kathy had the opportunity to discuss her experience with advanced metastatic melanoma and her subsequent treatments, side effects, and the creation of Save Your Skin Foundation. To listen to the interview excerpt, please click HERE
HuffPost, November 28, 2016
Even as I sat in the chemotherapy unit receiving my IV infusions, I did not fully understand the repercussions of what would happen in my future. I knew that someone somewhere along the line pressed a button that landed me in the chair with the potentially life-saving stuff flowing into my arm, but that was it. It never occurred to me that, should the disease come back, that I might not receive further treatment.
Here we are, in the year 2016, four years since Yervoy was approved by Health Canada for treatment of malignant melanoma, and I cannot have any more if I need it again. This is not for a medical reason; biologically speaking, my body can tolerate more treatment down the line. It is because the treatment that could prolong my life has been restricted in Ontario. By my own government.
To read the full article, please click HERE
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. To read the full article, please click HERE
Doctors say Health Canada has given conditional approval for the first ever combination of two immuno-oncology agents — Opdivo and Yervoy. Dr. Michael Smylie with the Cross Cancer Institute in Edmonton told 660NEWS, this class of drugs takes the brakes off the immune system. “They’re called immune checkpoint inhibitors,” he said. “What they’ve [researchers] have done is they’ve combined the two drugs and they’ve seen that in metastatic melanoma, patients where the response rate, which is the number of patients that actually get a significant shrinkage of their tumour, was historically about 10 per cent. It’s gone up anywhere from about 50 to 70 per cent.”
He said they’ve gone from about a five per cent, five-year survival to close to 65 per cent and they’re probably curing a significant number of patients, which wasn’t possible before. According to Dr. Smylie, previously, when people developed metastatic melanoma, there were no effective therapies and now doctors can offer potentially curative therapies to these patients. To read the full article, please click HERE
Tea with a Titan, Episode 21: Kathy Barnard, Melanoma Survivor and Advocate, October, 2016
Melanoma spreads like wildfire, and Kathy’s was no different. It spread to her lungs, her kidney, her liver, her adrenal glands, her abdomen, and her bones. She was given three to six months to live. That was 11 years ago. Today, she is cancer free and the founder of the much-respected Save Your Skin Foundation.
Kathy’s story is a reminder too that we need to take it upon ourselves to not just float in the dreamy space of “oh really – it’s nothing.” If you feel it’s something, don’t stop until you know what it is. To view the episode, please click HERE
Every year thousands of Canadians are diagnosed with melanoma. Kathy Barnard is the Founder of Save Your Skin Foundation and skin cancer survivor and came by to share her story. To see the interview, please click HERE
Save Your Skin Foundation Founder Kathy Barnard is interviewed by Fanny Kiefer on Shaw TV’s Studio 4 in Vancouver and discusses establishing the foundation and her own struggles battling melanoma. To watch the interview, please click HERE
Making awareness and education available is crucial. Since 2006, the Foundation has worked to raise awareness of melanoma and non-melanoma skin cancers focusing on education, prevention and the need for improved patient care.