Canadians are Paying more for Prescription Drugs than other Countries

While this country is still waiting for the Pan-Canadian Purchasing Alliance (PCPA) and Vertex Pharmaceuticals to come to an agreement regarding the cost of Kalydeco, Health Ministers of Ontario, Alberta and Yukon want to meet with the chief executive of Vertex Pharmaceuticals to get an explanation as to why Canadians have to pay a premium for this drug. This following a provincial-territorial health care committee meeting where Alberta Health Minister Fred Horne is on record as saying that it is unfair that Canadians have to pay more for the drug than Americans, to the tune of tens of thousands of dollars a year per patient.

While the case around the public funding of Kalydeco might be considered unique because of its astronomical cost, the fact that  Canadians end up paying more for prescription drugs than other countries is apparently not unusual at all, as was  pointed out  in the April 2013 issue of Health Affairs by researcher Steve Morgan, a health policy expert at the University of British Columbia.  He claims that Canada is missing out on brokering deals with pharmaceutical companies the same way fellow nations are. Morgan interviewed policymakers from nine countries similar to Canada, including Australia, Austria, Germany, Italy, the US and the UK.

The PCPA was announced in September 2010 by the provinces and territories as a means to purchase the most expensive brand-name drugs, but as reported in the Canadian Pharmacists Journal of September 2012, only 2 products have been purchased that way. And so it appears that the provinces and territories continue to “strike up their own individual deals with drug companies, missing opportunities to garner better prices if Canada negotiated rebates while buying as a whole country.” This according to Morgan, as quoted by Carmen Chai  with  Global News back in April of 2013:  “The pricing of medicines is now a game of negotiation, similar to buying a car at a dealership. There is a list price equivalent to a manufacturer’s suggested retail price and then there are  secret deals that everyone negotiates from there,” Morgan said. He told Global News that Canadians pay the second highest costs for brand name drugs in the world, second only to the United States. He said the large countries with multilevel health care systems lose out on drug pricing. New Zealand, for example, is a much smaller nation but it leverages its universal drug plan to lower its prices.

Canada pays about 20 per cent more for brand name drugs. Meanwhile, countries that negotiate the supply of generic drugs pay 90 per cent less than we do, Morgan said.
Tylenol or Advil, for example, would be about a fifth more expensive in Canada, while their generic counterparts, acetaminophen and ibuprofen, would be marked up by 90 per cent compared to other countries’ prices.

This shortfall in our bargaining power ends up on consumers’ shoulders, said Morgan.
“Current differences in price mean that Canadians are spending literally billions of dollars more than they should on prescription drugs. If we do not learn to negotiate rebates as well as comparators around the world, we will continue to pay billions of dollars more per year than we ought to,” Morgan told Global News. Pockets of our population, such as seniors, the poor or the very ill, end up paying the most out of pocket expenses for their drugs.

Across the board, Canadians and Americans paid for the most for their drugs. Deals struck between countries and drug companies are confidential though, so they don’t set precedents for other countries to follow.

Link to complete Global News article:

Posted in Cystic Fibrosis | Tagged , , , , | Leave a comment

Canada Wins Olympic Gold But Remains Well Out Of The Medals For Healthcare

And so another month has gone by without an agreement on Kalydeco funding. I guess it is a question of priorities, and as much as we should be very proud as Canadians to share the success of our Olympic athletes at the 2014 Sochi Winter Games, we stand a good chance of  finishing dead last among developed Western OECD nations in negotiating a price for Kalydeco with Vertex Pharmaceuticals.

At the present time, it appears that Vertex has pricing agreements in place with the following countries or their jurisdictions:

Northern Ireland
Republic of Ireland
The Netherlands
United States of America.

Australia, like Canada, has approved the drug but will also not pay for it until they have reached a pricing agreement with Vertex.

Now you might wonder how a small and presumably bankrupt country like Greece with a GDP of around 250 billion USD and a population of 12 million saddled with a 28% unemployment rate is willing and able to pay for Kalydeco. Compare this to Canada, a country with a population about three times its size,  a 7% unemployment rate, and a GDP of 1.82 trillion USD.  True, the prevalence of the G551D mutation per CF birth is lower in Greece, but that is hardly the point, is it? Unless, of course, this entire matter boils down to a matter of dollars and cents, as opposed to a consideration of the tremendous benefits that this drug will bring to those CF patients so badly in need of it.

Clearly, it cannot be the case that Canada is hard up for cash to pay for a life-saving medication such as Kalydeco, and especially not after Minister of State for Sport Bal Gosal told the House of Commons’ Heritage Committee that the government has invested more than $153 million over the last four years in Sport Canada programs to finance sport facilities and provide financial assistance to athletes. This represents an increase of $25 million over money spent in the four years leading up the 2010 Vancouver Winter Games. And if this country can find the money to support its Olympic athletes,  it makes you wonder once more what this country’s priorities are with respect to supporting the critical needs of some of its less fortunate citizens, including those Canadians with CF and the G551D mutation who’s lungs are likely to suffer irreversible damage the longer they are denied access to Kalydeco.

Posted in Cystic Fibrosis | Tagged , , , | 1 Comment

Sometimes It Is Not So Great To Be A Canadian

Under the headline “Why it’s great to be Canadian” – an online article on MSN Money last Monday concludes that Canada is a great place to live,  and this according to the Organisation for Economic Co-operation and Development (OECD)’s Better Life Index, which states that the Great White North performs “exceptionally well in measures of well-being.”

Unless, of course, you are someone with Cystic Fibrosis, a genetic life-threatening disease, and you are unable to get access to a proven new medication – Kalydeco – that is able to restore your life to near normalcy.  True, the cost of this medication at $400 a pill (twice a day) is as spectacular as it is effective, and definitely not in reach of the average individual in terms of having the means to pay for it. Unless you are so fortunate to have a private insurance plan, your only hope will be to see it covered under a provincial plan. That, or leave the country – and move to a place where the drug is funded, such as Ireland, the UK – or the US, where it will actually be free on compassionate grounds (courtesy of Vertex, the drug’s manufacturer)  if you cannot get it covered under a private or state Medicaid plan.

Of course, there is every intention to provide public coverage for Kalydeco in Canada, but until someone blinks first in the negotiation process between Vertex and provincial representatives, Canadians in dire need of this brilliant new drug are left out in the cold while CF takes its destructive toll on their lives and future prospects to survive this terrible disease to a reasonable age.

It is not always easy to do what is right, but if we have a choice in the matter we have an ethical obligation to do the right thing.  Just as we would want to do everything in our power to save the lives of those affected by a natural disaster – and as a country provide as much as $5 million to support humanitarian organizations helping typhoon victim in the Philippines – so should we do everything in our power to help those amongst us here in Canada when life has not be kind to them and afflicted them with a deadly disease. Doing the right thing now is to provide Canadians with Kalydeco now – today! – so they no longer need to feel like third class citizens in their own country, and abandoned by their own government.

H.L. Mencken once said that “Every decent man is ashamed of the government he lives under.”  Funding Kalydeco will prevent this rather cynical view from becoming a truism, at least for those who like to believe their elected representatives are here to look after them in times of their most urgent and life-saving needs.

Posted in Cystic Fibrosis | Tagged , | 1 Comment

Negotiating A Price For Kalydeco

The problem with negotiating a price for Kalydeco in Canada is without question a complex one, and not just because of the astronomically high price Vertex wants for this miraculously effective drug.

First of all, Vertex seems to hold all the cards: they alone have the medication that – for some – can make the difference between life and death, or at least restore their quality of life to a point that they are able to live normal lives again. Mind you, a recent announcement by Galapagos NV in Belgium stated that they are about to conduct trials on a CF potentiator that is claimed to be more effective than Kalydeco. This might eventually bring some badly needed competition into the marketplace and result in more reasonable pricing for this type of medication, and CF patients in need of it might feel less like victims in a hostage taking. I know that is putting it very bluntly, but that is how many are feeling in the current situation.

As well, Vertex is not hurting for money at the moment – nor for the foreseeable future – as they have pricing agreements in place in a number countries that will guarantee them millions of dollars in revenue for some time to come, or at least for as long as it takes for the competition to enter the marketplace, but that will likely still be a number of years away. In addition, the key players at Vertex have already cashed in substantially on behalf of Kalydeco’s success, when on April 19 Vertex’ market value rose by 6 billion after positive trial data.  At least one of its executives sold shares worth more than $60 million, nearly doubling the purchase price of his share options.

Secondly – and as we have pointed this out in an earlier blog – there is the lack of political will to make this happen for Canada as a nation. A nation, I thought, that wants to be known foremost as a leader in how it looks after its citizens. With due respect to the Albertan negotiators trying to work out a deal with Vertex, they are doing so with one arm tied behind their backs.  This is so because the Harper government has all but abandoned Health Care in this country – this is not a priority for them, as clearly evidenced by a number of things, such as the refusal to renew the Health Canada Accord due for renewal in 2014, as well as the dismissal of the Canada Health Council by cutting off its funding.

It is important to note the Canada Health Accord and the Health Council of Canada were Pan-Canadian health strategies, designed to provide Canadians with equal access to the highest standards of healthcare, regardless of where they lived. As well, the Council was supposed to monitor and nurture the development and implementation of the 2004 National Pharmaceuticals Strategy that would, amongst other things:

  • Develop, assess and cost options for catastrophic pharmaceutical coverage;
  • Establish a common National Drug Formula for participating jurisdictions based on safety and cost effectiveness;
  • Accelerate access to breakthrough drugs for unmet health needs through improvements to the drug approval process;

With the disbandment of the National Health Council,  this Strategy is now truly dead. Instead, we have what appears to be an ad-hoc agreement by the provinces, the Pan-Canadian Purchasing Alliance, and that is the body now sitting down with Vertex to decide on a price for Kalydeco.  Essentially, the provinces have been left on their own because – Mr. Harper seems to say – “Health Care is a provincial responsibility, so there – go for it, and see if you can sort these things out between yourselves. And don’t come to me for more money, as there isn’t any.”

Well, it isn’t so much that there isn’t any more money in the Tory-managed coffers, as the money they are spending elsewhere – such as in commercial development abroad – appears to flow freely: $25-million for an institute on mining and development based at the University of British Columbia; $16-million to improve environmental practices of Peru’s mining sector, and $17.4-million to “promote economic competitiveness” in mining regions to help build the businesses of small rural farmers in three areas of Peru where Canadian companies operate mines.

Not to say that these projects aren’t of any value to Canada, but you can draw your own conclusions as to the priority our federal government places on the overall Health and Well-being of Canadians.

Posted in Cystic Fibrosis | Tagged , , , , , , | 1 Comment

Australia Will Pay For Kalydeco Pending Agreement On Price With Vertex

Australia will pay for Kalydeco on behalf of  two hundred Australians with cystic fibrosis but before they receive their Christmas gift the drug company Vertex Pharmaceuticals that makes Kalydeco must negotiate a more reasonable price for its lifesaving treatment.
And the Federal Cabinet will have to approve funding for the medicine.

Cystic Fibrosis Australia chief David Jack welcomed the decision but said there was still work to do before patients could use the medicine. He urged Vertex, the pharmaceutical company that makes Kalydeco, to put patients ahead of profits in its price negotiations with the government. And he said the government also needed to do the same and recognise that this was an important breakthrough treatment that should be funded.

“A positive PBAC recommendation now allows Vertex and the Department of Health to negotiate a price agreement. We have every confidence that Vertex will continue to act in the best interests of the CF community and expedite negotiations required for a timely listing,” he said. ”To use a sporting analogy, while we have triumphed during the first half there is still another half to play before victory is celebrated,” he said.

Around 200 Australians who have cystic fibrosis have the G551D gene mutation that can be treated by Kalydeco.The government’s Pharmaceutical Benefits Advisory Committee which decides which medicines deserve a subsidy said yesterday it agreed the 10 per cent improvement in lung function of patients using the drug was “clinically significant and important”. It recommended Kalydeco be subsidised under the government’s Highly Specialised Drugs Program for the treatment of cystic fibrosis in patients aged six years and older.

It is one of the most expensive medicines ever approved for government subsidy and the PBAC wants a better deal on the price. Kalydeco was developed with funding from a cystic fibrosis charity in the United States and much of the basic research for the drug was performed in publicly funded institutions in the United States.

Many prominent medicos have been critical of the high price the company is charging for the medicine because much of the research behind it was funded by charities or the public.
Australia is one of the last developed nations to fund the drug.

Excerpted from

Posted in Cystic Fibrosis | Tagged , , | Leave a comment

Good News About Kalydeco From Nova Scotia

Today we finally (!) had some good news regarding the funding of Kalydeco. In an interview with CBC’s Elizabeth Chiu, Nova Scotia Health Minister Leo Glavine stood up for CF patients, like Carys Nurse and Tim Vallillee, and committed to have his department take action to make Kalydeco available in Nova Scotia should the Pan-Canadian Pricing Alliance not make progress by early next year in their negotiations with the maker of the drug, Vertex, to agree to a costing formula for Kalydeco.  Minister Glavine must be applauded for taking such action on behalf of CF patients in his province.

It remains to be seen if other provinces will follow suit, or whether they will wait to see the outcome of the protracted negotiations between ministry of health officials in Alberta and Vertex; it is assumed that any agreement on a costing formula for this drug will be adopted across Canada (except, perhaps, for Quebec)

This affirmative action by Nova Scotia regarding Kalydeco today and the negotiations in Alberta with respect to its costs suggest that we don’t really have our act together as a country.  While we pride ourselves on the quality and range of social services afforded by Canadians (especially in relation to the U.S.), the federation that constitutes Canada as a nation allows for the fragmentation of these services so, depending on where you live,  you might not be able to enjoy the same degree of coverage.

While it is true that this hodgepodge of federal and provincial jurisdictions  are often able to coagulate remarkably well on behalf of its citizens, there are some areas – such as healthcare – where this fragmentation can be acutely demonstrated and has led to the most deplorable results, with Kalydeco being a case in point.

Lest we forget, already a year has gone by that Kalydeco was approved by Health Canada for use in Canada. Not until the announcement from Nova Scotia today have we had any indication as to when this horribly expensive drug will be covered by provincial drug plans. As a result about 80 Canadians with the G551D CF mutation, who do not have a private drug plan,  are deprived of the tremendous benefits that this drug has to offer.

The negotiations in Alberta for an across-Canada price for Kalydeco are being held under the Pan-Canadian Purchasing Alliance – an arrangement between the provinces (except Quebec) initially agreed on in 2010, and again in 2012 with respect to the bulk-purchasing of pharmaceuticals.  This alliance would have been coming up for negotiation as part of the renewal of the 2004 Canada Health Accord in 2014.

And therein lies the rub, as the Harper government has decided to let the accord expire. The Canada Health Accord is the mechanism intended to enable equal standards of health care across the country. However, by not renewing it, the federal government is signaling is isn’t really interested in that kind of pan-Canadian approach to healthcare.  This in spite of the fact that at one time the conservatives were making noises about joining the provinces in the implementation of a National Pharmaceuticals Strategy.

Not surprisingly, in a further move to dismantle any kind of national governance of public health systems, the Health Council of Canada has been given the boot. Its funding is being cut off and it will be effectively out of business in early 2014. The Health Council was established in 2004 at the recommendation of former Saskatchewan premier Roy Romanow following his report on the sustainability of the Canadian healthcare system. One of its jobs was to advise and monitor the development of a National Pharmaceuticals Strategy. The council has been told that – without the Health Accord – its services are no longer required.

It is in this context of jurisdictional fragmentation and a clear lack of political leadership in health care that the pricing strategy around Kalydeco is being decided.  Apart from what transpired in Nova Scotia today, where is the political will to underpin the costing negotiations to ensure that Canadians who are in urgent need of this life-saving medication will have access to it? Yes, there are lives at stake here!

Finally, we can gain no comfort at all from the knowledge that the only other time the provinces went through the Pan-Canadian Purchasing Alliance to approve an expensive drug (Soliris), it took two years from the day Health Canada approved it for the drug to be funded by the provinces. Let us hope that the great leadership demonstrated by Minister Glavine in Nova Scotia today will now re-energize the negotiation process in Alberta to a swift and successful outcome so all Canadians in urgent need of this medication will be able to benefit from it at the earliest opportunity.

Posted in Cystic Fibrosis | Tagged , , , , , , , | Leave a comment

Public Funding of Kalydeco can be Cost-Effective

In a compassionate, caring society we should do everything in our power to help those who are affected by illness with the best possible care available to them.  As such there is an obligation to provide public funding for Kalydeco since it is known to be effective in case of a deadly disease such as Cystic Fibrosis.

Be that as it may, the reality today is that the ability to follow through with this will likely be a function of an economic argument, and here the potential cost savings introduced by making Kalydeco available to CF patients must be taken into consideration, especially since earlier this year  the  Ontario provincial Committee to Evaluate Drugs (CED) reached the conclusion that the high cost of KALYDECO™ has put the cost-effectiveness of this drug therapy in question.

In addition to Kalydeco providing a huge improvement to the quality of life for CF patients with the G551D mutation, this drug – as expensive at it is – will be a significant cost-saver to the medical system due to the vastly reduced need for frequent hospitalization, as well as being able to do without the extensive regime of CF associated medications that must be taken on a daily basis.  There is good evidence to suggest that these kinds of cost savings are realized almost immediately after a CF patient with the G551D mutation starts taking Kalydeco.

As well, we can anticipate significant long term costs savings to the public health care system due to the greatly reduced likelihood of a double long transplant being necessary in the CF patient’s future as the only means to survive the disease in the long term.

Lastly, measuring societal costs for the treatment of a disease such as Cystic Fibrosis is inherently difficult, but if Kalydeco continues to be as successful as it has proven be during its three-year trial, CF patients that are able to benefit from this drug will end up being productive members of society, and able to contribute to the full extent of their human potential; this as opposed to being a burden to society in terms of the cost of their care to the public health system.  The same can be said for their immediate caregivers – mostly parents of children with CF – who will be able to resume their lives and their careers unburdened by the toll levied on their daily lives by having to look after their loved ones afflicted with this awful disease.

Posted in Cystic Fibrosis | Tagged , , | Leave a comment

Beeton Girl Helping Homeless

Brad Pritchard – Simcoe News

BEETON -  Nov 28, 2013 – For her 12th birthday party this weekend, gifts are the last thing on Madi Vanstone’s mind. The Beeton girl has decided to use the day to help out the Barrie Out of the Cold program as a way to say thanks for all the support that’s allowed her to live a better life. Madi’s mom Beth Vanstone said her daughter’s cystic fibrosis symptoms have nearly disappeared since she started a new type of medication in August called Kalydeco.

“She’s doing phenomenal, after 30 days on the medication she tested negative for cystic fibrosis because it opened the channel in her body that creates all these issues,” she said.
Beth said she has a lot more energy now and is performing much better at school. She also no longer suffers from daily headaches and stomachaches.

“It’s not even a question if will it work, it’s changing her whole life,” she said. There would have been no way for her family to afford the expensive drugs without the support they’ve received from the community in recent months. Since the summer there have been several fundraisers to help the family purchase the medication not currently funded by the province. The most recent fundraiser was held this past weekend at the Club at Bond Head, bringing in $21,000 for the Vanstone family.

“We’ve got about six or seven months worth of medication saved in the bank for her,” Beth said. Now that her daughter is in a position to give back, she decided to use her party to help others in need by collecting food donations in place of presents. Madi and her friends will also bake up a batch of Christmas cookies for the shelter to help spread more holiday cheer.

“Madi has been a recipient of a lot of love from our community, so she wanted to give back and thought that might be place that doesn’t get a lot of attention,” Beth said.
While Madi is making great progress, not much has advanced on the political front to get the treatment funded. “We’re still working really hard to get the government to take responsibility for this,” she said. Beth plans to a join a group heading to Queen’s Park next month to ask support from the health minister. The group will include Milton resident Kimm Fletcher, who made the news last month after the province refused to fund brain cancer medication that could potentially extend her life.

Beth is also planning to make a deputation to gain New Tecumseth council’s support to ask the province to fund Kalydeco.

Posted in Cystic Fibrosis | Tagged , , , | Leave a comment

Nothing to Celebrate

One Year Anniversary of Canadian Approval for KALYDECO Goes by Without Public Access

TORONTO – Canadians with cystic Fibrosis (CF) have been living with unequal access to treatment for a full year now as KALYDECO a life-saving treatment for this disease celebrates its one year anniversary of approval by Health Canada without wide spread public drug plan coverage. Some Canadians have been lucky enough to receive this medication through their private insurance, but others continue to wait for their provincial governments to provide coverage while their lung function deteriorates day by day. The longer that access to KALYDECO is denied to Canadian patients, the longer we support a two-tier system where only those with private insurance can gain access to this life saving treatment.

“All we are asking for is an equal chance for all cystic fibrosis patients to get access to the treatment they need” said Christopher MacLeod, Chair of the Canadian Cystic Fibrosis Treatment Council and a CF patient who is receiving KALYDECO through his private insurance. “Public coverage for KALYDECO in Canada has been stalled for too long now, and for many patients access delayed is access denied.”

There are over 100 Canadians suffering from Cystic Fibrosis in Canada for whom KALYDECO may be the only alternative to an eventual transplant. The mean age of those killed by this disease is 22. The Canadian Cystic Fibrosis Treatment Council is calling on provincial governments to step up and provide public coverage for KALYDECO before it is too late for those who need it. At this time the drug is only available through private insurers, or through Quebec’s Special Access Program.

“This is a treatment that has revolutionized the way in which Cystic Fibrosis care will be delivered, it’s a game changer in the fight against CF,” said Dr. Kieran McIntyre, doctor of Respirology and Cystic Fibrosis at St. Michael’s Hospital. “I have patients that need this medication but without private insurance will not be fortunate enough to begin therapy. We cannot continue to have patients who are excluded from the care they need.”

Canadians with CF have nothing to celebrate until provincial governments decide that a two tier system for drug access is not acceptable and that Canadians should not be denied life-saving medication solely because they do not have private insurance.

“I spent three of the six months before I started taking KALYDECO in hospital,” said Chris. “I’ve been on the drug for a year now and haven’t spent a single day of that in hospital. I’m one of the lucky ones, but there are many people out there who do not share my good fortune. I will not rest until there is equal access for all CF suffers. “


Media Contact:

Chris MacLeod

Chair of the Canadian Cystic Fibrosis Treatment Council


Posted in Cystic Fibrosis | Tagged , , , , | Leave a comment


The Cystic Fibrosis gene was discovered in Canada in 1989 at the Hospital for Sick Children. Now, some 20 years later, we have the first medicine to result from that discovery: KALYDECO™. Also known by its generic name, ivacaftor, it is the first medicine to treat CF at the genetic level. Taken twice a day in pill-form, it allows the defective gene to act more normally, allowing the lungs to remain free of mucus and thus discouraging the colonization of harmful bacteria there.

KALYDECO™ was approved for use in Canada by Health Canada in November 2012 for people with CF aged six and older who have at least one copy of the G551D mutation in the CF gene. There are over 1,800 known mutations of the CF gene — the G551D mutation is just one of them and present in approximately 4% of Canadians affected by Cystic Fibrosis. And while there are roughly 100 people in Canada with the G551D mutation, at the present time there are only about 20 of them that fortunate enough to have access to this remarkably effective drug because of their private insurance plans. The remaining 80 patients are waiting and hoping for public funding.

This two-tier system is unfair and – in our opinion – un-Canadian! Countries such as England, Scotland, Wales, the Republic of Ireland and Northern Ireland have all found ways to publicly fund KALYDECO™, and Canada needs to do the same. It is simply unacceptable that KALYDECO™, the first medicine to work at the genetic level, is not covered by our governments while it is available to thousands of patients in other countries, and it is available to Canadian patients who have private drug plans.

If you would like to  advocate for public funding for KALYDECO™, you can start by contacting your local Member of Provincial Parliament or Member of Legislative Assembly. They can than influence the people at Alberta Health who are leading the Pan-Canadian Pricing Alliance in the review of KALYDECO™ to act quickly to recommend that all provinces and territories publicly fund this break-through medication.

Posted in Cystic Fibrosis | Tagged , , , , | Leave a comment