Canada Russell woman forced to raise thousands for melanoma drug that arrived too late to help her

19:07  13 december  2017
19:07  13 december  2017 Source:   ottawacitizen.com

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Nine months after she was diagnosed with advanced melanoma , Carolyn Pol is at home just outside Russell , surrounded by family, receiving palliative care. Raising money for the drugs delayed her treatment. By the time Pol started taking them, it was too late .

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Carolyn Pol, who nine months after she was diagnosed with advanced melanoma, is now at home just outside Russell, surrounded by family, receiving palliative care. Laura Pol photo© Laura Pol Carolyn Pol, who nine months after she was diagnosed with advanced melanoma, is now at home just outside Russell, surrounded by family, receiving palliative care.

Nine months after she was diagnosed with advanced melanoma, Carolyn Pol is at home just outside Russell, surrounded by family, receiving palliative care.

It is something the deeply religious mother of five says she is at peace with. Still, she wonders if things might have been different.

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.

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Russell woman forced to raised thousands for melanoma drug that arrived too late to help her . Say “ melanoma ” and thoughts turn to skin cancer. But there is melanoma of the eye too — ocular melanoma — with at least four cases in Medicine Hat.

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.

Carolyn Pol, who nine months after she was diagnosed with advanced melanoma, is now at home just outside Russell, surrounded by family, receiving palliative care. Laura Pol photo

Advanced melanoma was long a death sentence for many patients. That is changing. The most recent immunotherapy drugs available in Ontario have had long-term benefit for up to 20 per cent of patients, said her oncologist, Dr. Xinni Song of The Ottawa Hospital. Some were still in remission five years after treatment.

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Both Pol and her oncologist say they are frustrated with the situation — more so because the Ontario government pays for each of the drugs individually with some restrictions and the combination has just been recommended for provincial funding by the national oncology drug review program, although provinces are not yet funding it.

“I feel like a rabbit who has had carrots dangled in front of my face that I can’t get at,” said Pol, who now has tumours throughout her body, including one that makes it difficult for her to walk.

Song shares her patient’s frustration.

“It is frustrating to know that there was potentially a better regime for her, but we had to delay it until there were enough private funds raised and by then her disease was advanced,” said Song.

Immunotherapy drugs have been game-changers for some terminal melanoma patients. What difference that delay in access to the drug combination meant to Pol’s health is unknown. But it “will be on her mind and her family’s mind. It is on my mind too,” said Song.

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His son, Brian, raised enough money to start using new melanoma drug Keytruda, but his efforts were too late . Codi Morgan's grandmother has added ,000 to her mortgage to give her terminally ill grandson a longer life.

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Former U.S. President Jimmy Carter, who announced that he had been diagnosed with metastatic melanoma in 2015, is among melanoma patients whose lives have been extended by the new drug therapies.

But the drugs are expensive. Pol’s combination therapy cost about $45,000. That was a discounted rate and covered three cycles. Pol stopped taking them before a fourth round when it became clear her cancer was getting worse.

Some of the drugs aimed at melanoma can cost $100,000 or more. Combination therapies are higher.

Scott Gavura, director of provincial drug reimbursement programs at the provincial agency Cancer Care Ontario, said cases like Pol’s are “very difficult and a challenge for us as health officials.”

But it is essential that new therapies are carefully assessed in terms of how much value they offer for their cost, Gavura added. While some of the new therapies available to treat cancer have been beneficial, others touted as miracle drugs have had less than impressive results, he said.

“We don’t want to make investments in areas for cancer care where evidence is unclear or small, which might mean we have to say no to therapies where the benefit is much more clear and much more sustained.”

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You’ll hear all kinds of stories today about getting help , but honestly my mental health got a lot better the day I stopped working for Bell. Russell woman forced to raise thousands for melanoma drug that arrived too late to help herhttp

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In some cases, Gavura said, the drugs are so expensive that “it is not even a question of value for money but of overall affordability.”

He also argued the system of assessing and negotiating to purchase the drugs can take time but is part of the responsible use of Cancer Care funds.

Song, who is part of the Canadian Melanoma Task Force, agrees there must be procedures in place when it comes to cancer drugs “to ensure we are not bankrupting our public health system.” Still, she believes the review process is failing patients.

Decisions on drugs, she said, should be made more quickly and when drug funding is changed or restrictions added — as it was with the melanoma treatment Yervoy — it must be done more transparently and after consulting patients and physicians.

Song said she had to tell Pol there was a drug regime that she thought was best for her “but it is not funded and I can’t treat you with it. It is a difficult conversation to have.”

Pol, meanwhile, is back under the watch of her family doctor, who is providing palliative care. An older daughter has come home to help out and other family members live nearby.

“I am at peace with everything,” she said. “I believe that God is in control of the whole situation. I don’t have to fret or worry.”

epayne@postmedia.com

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