How To Get Kalydeco Funded In Canada

So – finally! – after Health Canada approved Kalydeco in November 2012 for use in Canada by CF patients aged six years and older who have the specific G551D mutation, it now appears this brilliant new medication will soon be available under provincial health plans to all Canadians with CF and the G551D  mutation so badly in need of it. Well, that is, except those in Quebec.  As usual, Quebec marches to a different drummer, so did not sign on to the pan-Canadian Pricing Alliance for an agreement in principle with Vertex Pharmaceuticals for a Canadian price Kalydeco.

This Quebec ideology – a matter of principle, apparently, so don’t look for a rational explanation – also includes the astonishing fact that this is now the only Canadian province that has not instituted testing of all newborns for the presence of CF. And that is baffling in the sense that there is  clear and unequivocal evidence from countries that have implemented NB testing for CF  many years ago that this actually saves the healthcare system money in the long run,  in addition to making a significant difference to the quality of life and life expectancy of folks with CF. But I digress …

Looking at how a pan-Canadian deal for Kalydeco was eventually brought about – I can’t do much better than quoting the following from a Toronto Star article written by Rob Ferguson on June 2nd, when it referred to the Kalydeco situation as   “a political football in recent months, with the cystic fibrosis community pressing the Ontario government for help and Liberal Leader Kathleen Wynne — now in the middle of an election — saying the province couldn’t afford it without a lower price from Vertex Pharma, the Boston-based maker of the drug.” As well, the article states that: “Provincial health ministers took the issue into their own hands in April, pledging to hold a meeting with Vertex instead of leaving the negotiations in the hands of bureaucrats. That meeting was held four weeks ago in Toronto.”

Clearly, this meeting proved to be the game changer, but it would be quite unfair to blame the civil servants tasked with reaching an agreement on price with Vertex for the more than two years it took to get to this point. As we stated here earlier, in a post titled Negotiating a Price for Kalydeco, on December 21, 2013: “… they are doing so with one arm tied behind their backs.” In the absence of any kind of political will to make this happen, they were simply not a position to move their bottom line unless they were told to do so from above.

With the federal refusal to renew the Health Canada Accord and the dismissal of the Canada Health Council by cutting off its funding in 2014, the pan-Canadian Pricing Alliance notwithstanding, there simply wasn’t the organizational clout in terms of a national mandate to make things happen. What was needed, clearly, would be some leadership at the political level to break the impasse in the negotiating process and bring a pricing agreement about.

We saw one effort to provide that kind of leadership in December last year, when Nova Scotia Health Minister Leo Glavine stood up for CF patients in his province to suggest their province would go at it alone in funding Kalydeco. We can only imagine the pressure he faced from the inside when he was forced to retreat from that position on behalf of the pan-Canadian Pricing Alliance.

In the end, it was Alberta’s Health Minister Fred Horne – representing the lead province in the pan-Canadian Pricing Alliance – who pushed the deal through with Vertex after he personally invited and met with Vertex representatives and some of his own colleagues in Toronto to get the matter settled for all of Canada.

Finally, we would be severely remiss if we didn’t recognize and congratulate the Vanstone family from Beeton, ON – Beth Vanstone and her 12-year old daughter Madi with CF – for their brave and persistent fight to keep Kalydeco in the media, and for confronting and keeping the pressure on local politicians to make the life-saving Kalydeco deal happen, and not only for them, but for all Canadians!

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Vertex Statement Following Meeting With Provincial Health Ministers

On Tuesday, May 13, Vertex met in Toronto with the Health Ministers from Alberta and
the Yukon as part of our ongoing discussions regarding the public reimbursement of
KALYDECO in Canada.

“While we had a lengthy discussion, we have not yet reached an agreement with the
provincial and territorial governments, despite the fact that our proposal is as good as or
better than the agreements in place in 15 countries around the world where people with
CF are receiving the medicine through public reimbursement,” said Stuart Arbuckle,
Executive Vice President and Chief Commercial Officer for Vertex. “We are extremely
disappointed that today’s meeting did not result in an agreement to allow the eligible
children and adults with CF in Canada to receive this medicine through public
reimbursement. People with CF are still waiting for access to KALYDECO, and this
process is taking much longer than they expect and deserve.”

Based on the meeting, both parties have committed to further discussions this week.

In Canada, we continue to provide KALYDECO at no charge to people with CF who are
very sick as part of a compassionate use or expanded access program while we wait for
provincial and territorial governments to make a decision regarding public
reimbursement. Vertex will continue to provide the medicine to these patients while
reimbursement discussions are ongoing. Further, for the patients receiving KALYDECO
under private insurance in Canada, Vertex will continue to provide patient support
services, including financial assistance to eligible patients who need it.

KALYDECO was approved by Health Canada in November 2012.

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Our Request to Ontario Premier Wynne To Fund Kalydeco Now!

May 8, 2014

Premier Kathleen Wynne
Legislative Building
Queen’s Park
Toronto ON M7A 1A1

Re: Funding of the Drug Kalydeco

As you are aware, I am the Chair of the Canadian Cystic Fibrosis Treatment Council an organization committed to ensuring access to life-saving treatments for patients with cystic fibrosis. I am also a 44 year old cystic fibrosis patient. I am fortunate that I have private insurance and have had access to Kalydeco since November 2012. The result for me and many others has been nothing short of remarkable.

However, Madi Vanstone, who you have met and too many others like her, have not been so lucky. Madi and others are forced to hold bake sales and use up their life savings to pay for a medication that makes a real difference for their lives.

You made a public commitment in the Ontario Legislative Assembly to Madi and the people of Ontario that this drug would be made available to her and others like her across the country. You left us with the impression that this was a priority and that it would happen quickly. We are now at 60 weeks or 15 months and counting since I met with Minister Matthews in January 2013.

I understand that another round of negotiations between Provincial Health Ministers and senior executives of Vertex Pharmaceuticals has been set for May 13th 2014. I insist that you take an active role to ensure that the negotiations come to a proper conclusion.

You are currently out around the province asking Ontarians to place their trust in your government and your ability to follow through on your commitments. As positive proof of the trust you are asking of all Ontarians, I ask you to ensure that this meeting fulfills your commitment to Madi Vanstone and others.

As a lawyer I am familiar with negotiations and how they can drag on. So in the meantime I have suggested to you and to Minister Matthews that Ontario and other provinces make Kalydeco available now to those that need it and ask the company to reimburse the difference when the price is ultimately negotiated(i.e. Drug plans pay the market price now and the company will rebate the difference.)

I also request the opportunity to brief your province’s delegation before they attend the planned negotiations. I ask you to instruct the Executive Officer of the Ontario Drug Plan to meet with my organization which includes leading Ontario doctors who treat cystic fibrosis patients every day. To date, our requests for a meeting have been refused.

A week ago you were quoted as saying to a group of high school students that:

“There’s nothing more inspiring than speaking with young people. I can’t wait to see the great leaders that they become. I believe that leadership is about making tough decisions – ones that provide opportunity now, as well as into the future. That’s what I will continue to do as Premier of Ontario.”

I call on you to provide Madi Vanstone and other children with this form of CF with a chance to actually live long enough to have the years to become great leaders. We need you to make the tough decisions that will provide them with an opportunity for a healthy life. I want to believe that is what you will do as Premier. Right now you have a chance to do so.

Power without a focus on people is an empty pursuit and I remain confident that you are better than that.

Yours truly,

Chris MacLeod

cc: Tim Hudak, Progressive Conservative Leader
Andrea Horwath, Leader of the New Democratic Party
Deb Matthews, Minister of Health
Beth and Madi Vanstone

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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:

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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.

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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.

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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.

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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

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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.

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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.

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