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time to lead

Julie Easley had just graduated from the University of New Brunswick when she was diagnosed with Hodgkin's lymphoma. She was 23 and broke - with exactly $9 in her bank account.

Thankfully, in Canada, her medical care was free of charge - or so she thought.

In fact, while physician visits and in-hospital care like chemotherapy are covered by medicare, Ms. Easley soon learned that the essential medication she needed to take out-of-hospital was not.

"It was a shock to me that I had to pay for cancer treatment. That's not how it's supposed to be in Canada."

Drug therapies have become an essential part of treatment for many ailments, but costs of the latest and most advanced treatments have soared. The response from public health plans has been uneven and often inadequate.

Ms. Easley had no private drug insurance and New Brunswick has no publicly funded drug plan for those saddled with big drug bills.

Friends held fundraisers, she scrounged anti-nausea medication ($23 a pill) from other patients and she took out personal loans to pay for the prescription for filgrastim (brand name Neupogen), a drug to treat the side effects of chemo that staves off deadly infections ($1,600 a month).

When her cancer treatment was done, Ms. Easley was $26,000 in debt. Twelve years later: "I'm all clear of cancer, but I'm still paying for my cancer treatment."

Katharina Kovacs Burns of the Best Medicines Coalition, an alliance of consumer groups and patients, said the "system of drug coverage we have now is unfair, it's unethical and it makes no sense."

She said Canada desperately needs a national catastrophic drug plan because too many patients are suffering undue financial hardship.

There are currently 19 public drug plans (mostly for seniors and those on social assistance) and 1,000 private drug plans in Canada. Yet, many Canadians - three million by some estimates - still don't have sufficient coverage for "catastrophic" drug costs, which are defined as anywhere from 2 per cent to 10 per cent of family income.

"Drug coverage in Canada been described as a patchwork and the quilt has some gaping holes in it," said Steve Morgan, associate director of the Centre for Health Services and Policy Research at the University of British Columbia in Vancouver.

About 40 per cent of Canadians have private drug insurance (about half of those have catastrophic coverage), 40 per cent have public health insurance (with big differences in deductibles and co-payments) and 20 per cent have no coverage and have to pay for drugs out-of-pocket.

Ultimately, coverage depends on where people live and where they work. Young, self-employed, and middle-income earners in smaller provinces are the most vulnerable.

Consider this: A person with a $20,000 annual drug bill - not unusual for a cancer patient or someone with a chronic condition like rheumatoid arthritis - would pay nothing in the Northwest Territories, roughly $1,500 in Quebec, $8,000 in Saskatchewan and $20,000 in Prince Edward Island.

"If this was the standard for medicare - for physician and hospital services - there would be a revolt in this country," Dr. Morgan said. "It's hard to believe we tolerate this situation."

Equally hard to believe is just how long the notion of catastrophic drug insurance has been on the table.

"This debate goes back to the beginnings of medicare," said Greg Marchildon, Canada Research Chair in Public Policy and Economic History at the University of Regina.

Pharmacare - meaning first dollar coverage of prescription drugs - was first formally proposed by Mr. Justice Emmett Hall in 1964.

Since then, programs have been introduced gradually, largely for seniors and welfare recipients. But as drug therapies have become an essential part of treatment and drug costs have skyrocketed, there has been increasing pressure to help working Canadians.

There have also been countless promises to create a national catastrophic drug plan.

The sticking point has been money.

Prescription drug spending exceeds $25-billion annually, with almost half coming from the public purse. The challenge, in public policy terms, is how to help those in need without spending more on those who already have coverage.

There have been several specific recommendations in recent years:

  • The Commission on the Future of Health Care in Canada, headed by Roy Romanow, said Ottawa should pay 50 per cent of drug costs once an individual's drug bill reaches $1,500 a year. That would cost Ottawa between $750-million and $1-billion annually;
  • A Senate committee, chaired by Michael Kirby, said Ottawa should pay 90 per cent of drug costs, but only after a patient's bill exceeds $5,000. That approach would cost about $500-million;
  • A ministerial task force said a standardized catastrophic drug plan that pays all drugs costs in excess of 5 per cent of family income, would cost about $5-billion, likely split 50-50 between Ottawa and the provinces.

"In national terms, those aren't insurmountable costs," said John Abbott, CEO of the Health Council of Canada, which is responsible for monitoring implementation of the health accords. "This issue is solvable."

If there is one point on which almost everyone agrees, it is that a national catastrophic drug plan will not happen unless Ottawa puts serious money on the table.

Mr. Abbott said the way to do so is via a health accord, the next one of which needs to be signed by 2014. "It's a case of political will now."

For Linda Wilhelm, a patient advocate who lives in Fredericton, political will, and political action, is urgently needed and long overdue.

"Drugs are important. They should be available to everyone," she said.

Ms. Wilhelm suffers from rheumatoid arthritis, a condition that has caused her to require 13 joint replacements. For years, she lived in excruciating pain but, in 2000, found relief with a new class of drugs called biologics.

But the drugs - etanercept (brand name Enbrel) and later golimumab (Sinponi) - are expensive, about $1,700 a month, and there is no catastrophic drug coverage in New Brunswick.

Luckily for Ms. Wilhelm, her husband's employer has a private drug plan and, after a fight, they agreed to pay for the treatments.

"I would be dead if I didn't have private drug insurance," she said bluntly. "At the very least, I would be living in a hospital or nursing home, at great expense to the state."

While she has coverage herself, Ms. Wilhelm said she cannot in good conscience, remain silent.

Ms. Easley, who is now cancer-free and almost finished paying off her drug debts, is also compelled to keep fighting for better catastrophic drug coverage.

That is because her mother, Shirley-Dale Easley, has been diagnosed with a rare form of cancer, small cell carcinoma of unknown primary.

She has undergone more than 100 days of chemotherapy so far and her out-of-hospital drugs will cost $90,000 this year. Ms. Easley, a retired teacher, has a drug plan that covers 80 per cent of those costs, but that means she still had to pay $18,000 out-of-pocket. She can only afford that because Roche, the company that makes the cancer drug bevacizumab (Avastin) is providing financial support.

The younger Ms. Easley summed up the situation like this: "It's a decade later, and we're still dealing with this same problem accessing drugs. We have to fix this."

Timeline: A prescription unfilled

1964 - The Royal Commission on Health Services, headed by Mr. Justice Emmett Hall, calls for a national pharmacare program.

1970s-80s - Provinces introduce a variety of drug benefit programs for seniors and people on social assistance

1980s - Provinces create drug benefit programs for people with rare disorders.

1996 - Quebec introduces a universal pharmacare program, one that obliges all citizens to have a drug plan, either private or public.

1997 - The National Forum on Health, chaired by Keith Spicer, recommends a national pharmacare program. "We call on governments to chart a course leading to full public funding for medically necessary drugs."

1997 - The Liberal Red Book promises that, if elected, the party will "ensure that all Canadians have access to medically necessary drugs within the public health care system."

2002 - A Senate committee, headed by Michael Kirby, recommends a catastrophic drug program. "The committee strongly supports the view that no Canadian should suffer undue financial hardship as a result of having to pay health-care bills."

2002 - The Commission on the Future of Health Care in Canada, headed by Roy Romanow, recommends a catastrophic drug program. "Prescription drugs are an increasingly important part of our health-care system. But too many Canadians have no drug coverage at all, and existing provincial drug insurance coverage is uneven."

2002 - A study shows that one in nine Canadians has inadequate drug coverage.

2003 - First ministers commit, in writing, to a catastrophic drug plan and Ottawa provides $16-billion in additional funding for drugs, primary care and home care. "No Canadian should suffer undue financial hardship for needed drug therapy."

2004 - Ottawa and the provinces sign a $41-billion Health Accord that no longer ties them to specific programs like catastrophic drug coverage.

2004 - Ottawa and the provinces adopt a National Pharmaceuticals Strategy that includes a task force on catastrophic drug coverage.

2004 - Stephen Harper, on the campaign trail, endorses a catastrophic drug plan as proposed by the Kirby commission. "The New Conservatives ... propose to help individuals and provinces deal with soaring drug costs."

2006 - A report shows six million Canadians have inadequate drug coverage, including 600,000 who have no drug coverage at all.

2008 - Provinces and territories issue a statement saying they hold a "common view that catastrophic drug coverage is as essential to Canadians as physician and hospital coverage" but that Ottawa has a "funding responsibility" to make it happen.

2008 - Liberal leader Stéphane Dion, on the campaign trail, promises to establish national standards for catastrophic drug coverage and to provide $900-million in federal funding.

2008 - The NPS task force estimates a national catastrophic drug plan would cost $5-billion.

2009 - The Health Council of Canada describes plans to reform drug access as a "prescription unfilled," saying "catastrophic drug coverage is a critical social safety net."

2010 - A poll commissioned by the Canadian Cancer Society shows 74 per cent of Canadians support a national catastrophic drug plan.

- André Picard