Alone in the crowd - Lobby continues for universal drug plan for MS patients

By KIRK SQUIRES
The Packet

Newfoundlanders and Labradorians with Multiple Sclerosis (MS) are eagerly awaiting the next provincial budget.

They are anxious to see if the Williams government will provide universal coverage for MS drugs.

Currently Newfoundland and Labrador is the only province in the country not covering the drugs.

"It is a disgraceful situation the government has allowed to persist and it causes huge hardship for the 600 plus MS patients in the province who don’t have access to the drugs they need," says Sean Kirby, vice chair of the MS Society’s Atlantic Division.

"If people have access to the medications they can remain in the workforce, they can continue to support themselves and care for their families."

Kirby says Newfoundland and Labrador has been the main focus of the MS Society’s Atlantic Division.

"It’s the only province in the country that doesn’t provide universal coverage of the MS drugs.

"Even within Atlantic Canada, Nova Scotia has the best program in the country, providing full universal coverage for its patients.

"This has really been our sole focus from a government relations standpoint; it’s a situation that can’t be allowed to continue."

Limited coverage

Provincial Health minister Ross Wiseman says Newfoundland and Labrador does offer coverage for MS drugs under its Prescription Drug Program (NLPDP).

The program was designed to provide assistance for people on income support and seniors on fixed income whose income does not exceed a certain level.

Wiseman says the program has since been enhanced to include low income earners.

"The basis for the program, form the beginning, has been driven by a means process rather than a disease specific program," says the Minister

"In the last three years we have made enhancements to that program by covering a broader range of medications. One year we added the programs for Alzheimer’s drugs. Another year in was arthritic and cancer drugs.

"MS drugs are covered for those people who have a card. Our current program covers the MS drugs," he says.

"The statement that MS drugs are not provided in the province is not necessarily a true statement. It may apply to some."

However, only those on social assistance, seniors and low-income earners receive assistance to pay for their MS drugs.

And in the case of low-income earners the drug is provided on a co-pay where government only picks up a portion of the cost on what Wiseman describes as a "sliding scale".

That fact is Newfoundland and Labrador does not provide universal MS drug coverage.

Commitment

Kirby says there has been a lot of good will within government to address this issue.

He notes Premier Williams joined the MS Society at a news conference on Feb. 14 and made it clear he is going to do something in the upcoming budget.

"We give him full credit for that and for the commitment he made.

"Our concern is if the government is going to do anything that actually helps MS patients, it has to be full universal coverage or else it simply won’t allow people to access the drugs."

He says a co-pay system is not the answer because the drugs are so expensive most patients can’t even afford co-pay.

"The drugs actually range from $17,000 to $27,000 per year.

"Ever since the premier made his commitment to do something in the budget our message to government has been the something has to be full universal coverage or it isn’t coverage. It won’t actually help people otherwise."

In a recent press release the MS Society says the government’s recent "expansion" of the NLPDP is not an expansion at all in the eyes of MS patients since they continue to be unable to access these medically necessary medications.

For example, a family with children earning $30,000 per year still has to pay 70% of the cost of the MS drug therapies under the NLPDP. Given the cost of the MS drugs, this family could be required to pay up to $19,600 per year in co-pays – which is clearly impossible.

Worse still, a family with a household income beyond $30,000 gets no additional government support from the recent NLPDP changes.

Any new initiative to provide coverage of the MS drugs that mirrors the NLPDP changes — that includes income restrictions and/or co-pays —would create the same problems for MS patients.

Economics

A major part of the MS Society’s argument is based on economic grounds.

"If you help people get the drugs and help manage the disease they can continue working, in most cases," says Kirby.

"They remain active and independent. They stay healthier, which lowers health care system costs. They stay off social assistance, which reduces the cost to government. What we are saying is, if you look at the cost to government it would actually be cheaper overall to provide the universal coverage than to do what they are actually doing," he explains.

"The government has made a big deal about wanting to eradicate poverty. The reality is their policy on MS drugs is forcing people into poverty."

Kirby notes most people are diagnosed with MS between the ages of 15-40.

"You have a patient group who, for the most part, are at a young age. With the right support they can remain working and independent, often for the rest of their lives. Without that drug coverage they are forced into a life of deteriorating health and dependence on the government."

National level

On the national level the MS Society of Canada is also lobbying for change.

"The decision whether or not to have coverage for MS drugs or other prescriptions drugs is totally up to the provinces," says Deanna Groetzinger, vice president of government relations and policy with the MS Society.

"Even though Health Canada approves drugs, once they are approved it is up to each province or territory to decide whether or not it will cover that for the people who live in that area."

Groetzinger says Canada has one of the highest rates of MS in the world. There are an estimated 55,000 to 75,000 Canadians with MS.

While the drugs are expensive, she says other provinces have found the money in their budgets to cover them.

"The average Canadian cannot pay that out of their own pocket, it is totally impossible. Other provincial governments have stepped in and are helping their residents pay the cost of the drug.

"There are some small co-pays in some instances but nothing most people can’t manage."

She says the national organization is also pushing hard for a national pharmaceutical strategy to cover the so-called "catastrophic" drug costs.

"So far it is really just a plan on paper. We are pushing really hard to make sure there is some kind of national pharmaceutical strategy so the situation won’t exist any more.

"I think we have some good models of how this could work. There could be effective and equitable coverage for high cost drugs across the country so it wouldn’t be this patchwork of coverage that . . . depending on where you live, determines if you get treatment."

For now, however, the MS Society and MS patients in this province will have to wait until the Williams government delivers its 2007 budget.

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