Al and other residents of Ontario

[Cathya]

When I saw my oncologist this week at the General Hospital in Ottawa he said that the doctors there were thinking of setting up an Infusion Clinic to make all of the new treatments that are not now covered by OHIP available to patients. He said that the plan would be to let them pay for them privately or through secondary insurance providers. Yes, it is a very political issue but I think I am going to volunteer to do fund raising for the clinic if it opens. Scarey though.

Cathya

[al from Canada]

Not so scarey.

The only ones afraid of this are those who misinterpret this. All Ontarians are aware of the fears associated with a two-tiered health care system. One for the rich and one for everyone else. This however is not even close to a two-tiered system as these private clinics offer drugs that are "off label". The bottom line: if your onc won't prescribe off-label drugs for you; there is another option. I applaude doctors willing to buck the system. If you want off-label treatment, what are the alternatives in a system bound within the constraints of a public health care system?

Think of it this way; the hospitals get their funding from the government from administration of "approved" therapies. Hospitals are not allowed to accept private payments for meds. What are the alternatives?

Maybe these guys are just entreprenuers looking to make a fast buck at other peoples expense but; if it weren't for them, there would be NO access to these drugs.
This is a politically charged issue where you have to cut to the chase.

Al

[Cathya]

I agree totally. These doctors are only frustrated and trying to get the newest, most effective drugs to their patients and recognize that Ontario is behind other provinces (BC etc.) in funding. However, the opening of clinics like this will definitely cause a stir and lots of political fallout. I intend to be as politic as I can while helping in any way I can to get the drugs out. The question will obviously be what do people who have no secondary heath care and no money do? That is why I want to fund raise.

[al from Canada]

Dear Cathya,
Either fundraise or be a political activist. The message that needs to get out is; what happens to or what do we do with, the people who have run out of options? I think the health care system needs to give the doctors discretionary power to prescibe off-label and still operate within the constraints of the system. After all, how many times will a doctor prescribe a treatment that isn't working?

side-bar: I wonder what our american friends think of this argument; they must think we live on another planet. (no disrespect intended)

Al

[Lolly]

Al and Cathya; your discussion isn't as foreign to us in the U.S. as you might think as the Medicare/Medicaid government-run insurance program for our elderly, disabled and low income population works in much the same way, and, many of the insurance companies for the rest of the population follow Medicare's lead and won't approve a new treatment or drug until the government program allows it.

<3 Lolly

[Cathya]

This is so frustrating. For instance the sister of a neighbour here has multiple myeloma. There is a drug similar to herceptin for this illness and available in a couple of other provinces but not approved here in Ontario. It is simply a matter that the numbers are not there....the numbers inflicted with this illness as compared to breast cancer. The Ontario government approved herceptin but not this drug. It is not a cure but prolongs life but is as expensive as herceptin and the Ontario government made a financial decision and that was it. This new clinic would offer the drug to her but she would have to pay using either a secondary insurance provider or her own funds. If she had happened to live in a province which approved the drug it would be available. We say here we have universal health care but we don't. It really depends where you live in Canada. I believe that someone should take the government to court over this....that it is against our constitutional rights and I am surprised that no one or a group have not.

[al from Canada]

There must be an advocacy group for multiple myeloma...because that's who should be making the phone calls and lobbying.

Al

[Cathya]

Drugs for cancer easy to get in B.C.

Report card finds patients in Ontario, PEI have poorest access to new medications

LISA PRIEST


Access to cancer drugs varies dramatically by province, with British Columbia providing the quickest access to the most medications, according to a report card on the cancer system.

That contrasts with Ontario, where cumbersome review processes have made obtaining some of the newer cancer drugs a "nightmare," Kong Khoo, a Kelowna-based medical oncologist, told a packed news conference in Toronto yesterday.

"There's a huge amount of paperwork and difficulty accessing these drugs," Dr. Khoo said in releasing the Cancer Advocacy Coalition of Canada annual report card.

The coalition's review found that of the 24 cancer drugs studied, all of which represented key advances, B.C. covers the cost of providing 21 of them. In Ontario, only six such drugs had approved funding and Prince Edward Island was the lowest of any province with only four fully funded drugs.

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In Ontario, for example, Velcade does not have full, approved funding to treat a relapse of multiple myeloma, nor does Tarceva for non-small-cell lung cancer or Campath for relapsed chronic lymphocytic leukemia. Alimta, which is given with Cisplatin for mesothelioma, a rare form of cancer associated with asbestos exposure, also did not have full funding in Ontario as of late December, said Dr. Khoo, who is on the board of directors for the Cancer Advocacy Coalition of Canada, a non-profit group that receives unrestricted funding from a variety of pharmaceutical manufacturers.

Part of the problem, he said, is that not all provinces finance oral and intravenous cancer drugs through a centralized cancer agency in the way that B.C. does.

Some newer drugs are funded for the elderly but not the young, or through private insurance. Some drugs are available only through individual oncologists and hospitals. Some not at all.

As well, not all provinces are quick to fund cancer drugs, even when the scientific evidence is compelling.

For example, when a large, clinical trial in December, 2000, showed that Rituxin dramatically reduced the death rate for lymphoma in patients aged 60 to 80, B.C. approved and funded the drug three months later, in March, 2001, to its younger patients, as did New Brunswick.

By March, 2004, the death rate from lymphoma in B.C. had been reduced by half. Yet, it was only after lobbying from patient activists and an advocacy coalition, and media coverage that the drug was provided in Alberta and Ontario in the spring and summer of 2004, the report said.

The early introduction of Rituxin to lymphoma patients under 60 from March, 2001, to April, 2004, probably saved about 20 lives. However, during that same period, as many as 100 patients under 60 died of lymphoma in provinces where funding was delayed, the 47-page report said.

"The human tragedies accompanying these untimely deaths of relatively young people can only be imagined," said the report by the group, which comprises cancer specialists, health executives and patients' advocates. ". . . Had they been allowed to remain alive as productive and tax-paying citizens, they probably would have 'paid-off' the cost of their treatment in their ensuing working years."

Overall, the report said B.C. has the best funded and most timely access to cancer drugs and the best cancer outcomes and lowest mortality. Alberta provides only modest access to new cancer drugs. Although the report noted that Ontario has approved funding for only six drugs, it does provide limited access to 13 additional ones.

"It's come to a point where many of these drugs are new standards of care. If you don't give these things, you are medically liable, " Dr. Khoo said in an interview. He predicted that, in the future, "people will be dragging governments to court."

However, he did note that the cost of the newer cancer drugs is substantial, with 15 of them carrying a price tag of between $20,000 and $70,000 for a standard course of treatment, which ranged from 12 weeks to one year.

What all of this research shows, said Dr. William Hryniuk, chairman of the group's board of directors, is that Canada needs a catastrophic drug program.

Terrence Sullivan, president and chief executive officer of Cancer Care Ontario, said yesterday that the Drug Quality and Therapeutics Committee, which approves all cancer drugs in Ontario, is the most robust of its kind in the country.

He said the independent committee of leading medical oncologists, health economists and ethicists looks at the medical evidence on a drug's effectiveness and cost effectiveness, then recommends to the provincial government whether it should be funded.

"Nobody is telling those people what to say or what to think," Mr. Sullivan said. "They are working on good standards of evidence."

In an interview yesterday, Dr. Khoo said he is tracking the drugs province to province because he sees his fellow cancer specialists and patients struggling with the system.

"They can't say anything or they can and nobody listens," he said.

Cancer drugs

The Cancer Advocacy Coalition of Canada looked at 24 cancer drugs and assessed where each province stands on approving and funding them. (Status as of Dec. 25, 2005.)

Approved funding Unlimited access* Recommended but not funded Not approved or funded British Columbia21102Alberta7764Saskatchewan12246Manitoba9 1005Ontario61314Quebec14802New Brunswick15405Nova Scotia51027PEI46113Nfld. And Labrador9618*Under limited access, a drug may be funded through a provincial pharmacare plan to those over 65 or on social assistance, while others receive partial or no coverage. In some provinces, drugs may only be available through certain oncologists or hospitals.

SOURCE: CANCER ADVOCACY COALITION OF CANADA

[Cathya]

Man sought treatment in Netherlands

Board rules he was right to do so because therapy was unavailable in Ontario

LISA PRIEST


The Ontario government has been ordered to reimburse a cancer patient who travelled to the Netherlands after repeated treatments in Canada failed to rid him of his bladder tumours.

Ontario's Health Services Appeal and Review Board, which hears from patients seeking to recoup out-of-country treatment costs, agreed the provincial government should reimburse Warren Sutherland for the cancer therapy he received.

The Hamilton man had been suffering with superficial bladder cancer for five years, but none of the treatments rid him of the disease. His last option, doctors told him, was to remove the bladder and prostate, an option Mr. Sutherland characterized as having a "questionable hope of long-term survival."

Instead, the former insurance company executive did his own research on the disease. He learned that there was an effective treatment pioneered in the Netherlands and commonly used in Europe that shrinks tumours using a mixture of chemotherapy and hyperthermia (a type of heat therapy).

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On Mr. Sutherland's behalf, his family doctor applied to the province's insurer, the Ontario Health Insurance Plan, asking it to cover the costs of the procedure. On the application form, the doctor said the treatment was not experimental, is not performed in the province and is appropriate for a patient in Mr. Sutherland's medical circumstances.

In rejecting the request, Dr. Jude Coutinho, medical consultant for the Ministry of Health, wrote in a Nov. 16, 2004, letter, entered as an exhibit at the board hearing, that the procedure was rare.

Consequently, "I am unable to conclude that the service requested could be considered generally acceptable by the medical community in Ontario," he wrote.

Believing it was his best option, Mr. Sutherland, then 62, went to the Netherlands in fall of 2004.

There, he stayed in Nijmegen, near the German border, where he received weekly treatments for six weeks.

"They put the chemotherapy into the bladder, stick a microwave probe into you and they heat it up at unbearably high temperatures," Mr. Sutherland said in a telephone interview. "Then they take the chemical out."

When he returned home to Ontario, Mr. Sutherland launched an appeal to the Health Services Appeal and Review Board, arguing that the treatment was not experimental. He wrote that it is commonly used in a number of European countries, including France, Germany and Switzerland.

"I have paid premiums to OHIP my entire life, run in the Terry Fox fundraisers, contributed annually to the cancer drives and now find out that I am ineligible for funding for my cancer treatment for bladder cancer," he wrote in a Nov. 9, 2004, letter to the board. ". . . I think it is grossly unfair to deny my request for funding for the medical treatment."

Mr. Sutherland said he spent $20,000, which included a long stay in the Netherlands while undergoing medical care. The actual treatment cost about $5,000.

Ultimately, the appeal board agreed with him, saying that the treatment is not experimental, that it is generally accepted as appropriate for a person in the same medical circumstances, and that an identical or equivalent treatment is not available in Ontario.

The board cited a 2004 study published in Urology, which concluded that three-quarters of all patients who received the treatment achieved a "complete response," which means that all signs of cancer disappeared, based on symptoms, physical exams, radiology and laboratory tests.

While Mr. Sutherland is glad he sought the treatment, it was later found that he had another recurrence, which necessitated the removal of his bladder and prostate at St. Michael's Hospital in Toronto.

"Since I've come back, I've had the surgery and six months of chemotherapy," he said. "I feel pretty good right now."

[Veronica]

Cinthya,

I fully agree with you. Our Ontario cancer care is absolutely 15 years behined. I must say one the worst in the world. Recent article in G&M showed that in the USA the cancer deaths stabilized. In Canada continues going up. One of the reasons is our oncologysts are bound to go by the COOK BOOK, are NOT allowed to have their own input. The whole system is controlled by government officials. Your reference to other provinces is right on.
Lets support the clinic in Ottawa and let the political outcry begin.
Please let me know the coordinates of the clinic.
The very best wishes.
Veronica

[Veronica]

Sorry Cathya I ment you and not Cinthya.
Veronica

[al from Canada]

Veronica,

Where in Ontario (or Canada) do you live?
Al

[jjfromcanada]

I am having Herceptin at a private clinic, Provis, in Toronto. OHIP will not pay for it since I am beyond the timeframe approved by Cancer Care Ontario for adjuvant treatment (7 months, I believe is their cut off) and so far, fortunately, have not developed any known mets.

The way it works is your own oncologist must write the prescription and then the clinic infuses it. They operate in the evenings and there is an oncologist there at all times. It is staffed by oncology nurses from local hospitals.

OHIP does pay for my MUGA scans though.

I think the idea of fund raising for treatment is a wonderful idea, but wonder why Roche Canada is not stepping up to the plate to fund treatment as Genentech does in the US.

Why spend all this money developing drugs that work if the solution is too costly to benefit the patients? I would like to see some of the funding for research redirected to treatment. I want to see that money out of the laboratory and available at the clinical level.

With regards to the US, when I was seeking Herceptin last summer, I got turned down by two cancer clinics there because I did not meet the timeframes for adjuvant treatment issued by NIH. I was surprised since I thought you could get anything there as long as you could pay for it. Not quite everywhere.

Advocacy is an interesting issue because my understanding is that any donations made to advocacy groups are not tax deductible. Thus the Cancer Advocacy Coalition is largely funded by drug companies. They recently issued their annual Report Card on cancer treatment in Canada and took a knock for that funding on the news report. The reporter did not mention this tax issue and with groups like the Canadian Cancer Society able to provide tax receipts, I think that caveat makes a difference where people send their donations.

We already have a two-tiered system here anyway, since some people have a drug plan at work and some don't. What we are really advocating is a three-tier system. I am retired and have a fixed amount from my former employer in a drug plan. They have refused to pay for Herceptin for me also.

I support Provis and would recommend it and other similar clinics to anyone. What we need to do though is find a way to raise funds for people who cannot afford to take advantage of private clinics.

[Cathya]

My understanding was that 1 year was the cutoff. Have you tried the Trillium Drug Program at 800-575-5386? Depending on your income you might qualify for reimbursement from them. Given the huge cost involved with herceptin it is worth while to apply. On a fund raising basis, I wondered if insurance companies in Canada wouldn't be a good bet. Also, does the Canadian Cancer Society fund drug treatment at all I wonder or just research?

Cathya