Kalydeco: What is the whole story?

The other night I caught a little foreign film in which the woman protagonist was one difficult lady to love. She had a young niece who was also damn difficult. Thrown into the mix was a boyfriend who had his own little, and so little, quirks. The movie ended on an upbeat note but with such a convoluted story it was difficult to know how all would play out in the end.

Sun Media is using the story to attack Ontario Liberals.

Now take the news. Everyday we read, hear and watch stories reported in the media. They are usually good tales with strong, neat story lines. Maybe too neat. I often have the feeling there is more to these stories than we are being told. Life is depicted by the media more as bad fiction than rich reality.

Take the story of the young Ontario girl taking the very expensive Kalydeco (ivacaftor) to treat a rare form of cystic fibrosis (CF). Sun Media reports it costs $348,000 annually in Canada for this unique drug. This is completely out of the financial reach of most people. At this point, the Ontario government is refusing to assist this young girl and her family as they struggle to cope with this massive expense.

The government has stated that it would like to help and to this end it and a number of other Canadian provinces are in negotiations with Vertex, the maker of the drug. At this point, the company and the provincial drug consortium in Ontario are at loggerheads over the price of the drug which is perceived by many to be outrageously expensive.

The kicker in this is that the genetic variation of CF the drug treats is rare. It is so rare that only about 20 people in the province would be helped by taking Kalydeco. The entire cost to the province would be less than $8 million.

Read the story at news.com.au.

What has the mainstream media left unsaid? Well to start, it is not just bureaucrats in Ontario balking when confronting the high cost of the Vertex drug. Health care bureaucrats around the world have choked when confronting the high cost.

A story similar to the one being played out in Ontario made headlines across Australia. Ellie Haikalis has the type of cystic fibrosis controlled by Kalydeco. Unfortunately, her family cannot afford the treatment and the Australian government refused to assist them.

Her mother, Rachelle, told the media  she and her husband had discussed selling their home but realized that even taking that drastic action would not raise the money demanded by the drug maker.

Almost thirty concerned American doctors banned together to pen a letter to Vertex. They wrote:

It is at best unseemly for Vertex to charge our patient's insurance plans (including strapped state medical assistance plans), $294,000 annually for two pills a day . . . This action could appear to be leveraging pain and suffering into huge financial gain for speculators, some of whom were your top executives who reportedly made millions of dollars in a single day (Boston Globe, May 29).

The dispute over the cost of Kalydeco is just one skirmish in a larger, ongoing war being fought in numerous countries scattered across the globe. But the Kalydeco story on its own is a good one. Many see the price charged for this drug as "unconscionable."

Read the fine Milwaukee-Wisconsin Journal Sentinel story.

A story in Medpage Today, Cystic Fibrosis: Charity and Industry Partner for Profit, points out Vertex developed ivacaftor (Kalydeco) "with the help of a $75 million investment from the Cystic Fibrosis Foundation -- as well as a hefty investment from taxpayers through grants from the National Institute of Health which underwrote the cost of early research."

It isn't just Yanks who have some skin in this game. There are Canadians at the table too, such as Lap-Chee Tsui and John R. Riordan of the Hospital for Sick Children in Toronto. The two research scientists, along with Francis Collins of the University of Michigan, led a team isolating the gene responsible for cystic fibrosis. Medical breakthroughs do not occur in a research vacuum.

On the upside, the drug cost isn't out of sight for everyone. Ian Smith, Vertex executive vice president and chief financial officer, exercised stock options to gross more than $60 million in one day, according to the Milwaukee-Wisconsin Journal Sentinel.

If Smith had the type of CF in question, he could live to be a hundred and never experience any difficulty in paying for his supply of Kalydeco thanks to his after tax profits from just that one day.

Of course, Smith does not have CF. The millionaire has no reason to worry. He can breath easy.

Comparing apples to oranges

Jonathan Sher, a Sun Media investigative reporter working for the chain's London, Ontario, newspaper has filed another story in a series examining health care in Ontario: Health ministry data on hospital overcrowding riddled with errors. From the tone of Sher's past articles and the frequent positive references he has made to the American health care system, one might surmise Sher is no fan of Canadian single-payer health care.

Sher, who may have been born an American citizen, is one bright fellow. After graduating from the University of Virginia with a B.A in history and foreign affairs he went on to earn his Doctor of Law from the University of Southern California in 1992. It has been reported he is a member of the New York State bar association. With his strong background in law, Sher knows how to build a strong argument.

I believe it is safe to say that when Sher slides an apples and oranges comparison into a story he does so knowing full well what he is doing.

Sher tells Sun Media readers:

Ontario has 2.4 hospital beds for every 1,000 residents, less than half the European average. Of 39 countries compared by the Organization for Economic Co-operation and Development, only three had fewer hospital beds: Mexico, India and Indonesia. 

This is not the first time that Sher has compared a Canadian province with the entire continent of Europe. He goes on to compare Ontario with 39 countries in an Organization for Economic Co-operation and Development list. I addressed this debating trick in an earlier post: Hospitals too full to be safe? Not in London, Ontario.

As I wrote in the earlier post:

Let's try comparing apples to apples: countries to countries. According to the most recent numbers released by The World Bank, Canada has 3.2 beds per 1000 people. Both The United States and Britain have a smidgen less at 3.0 beds per 1000. Sweden fared even worse with only 2.7 beds.

According to the newspaper article, Ontario has only 2.4 hospital beds per 1000. It sounds bad and it is bad but Ontario cannot lay claim to the worst numbers on the continent. For lower numbers look south. Ontario has more beds than almost 40% of the American states according to The Henry J. Kaiser Family Foundation. Oregon only has 1.8 beds per 1000 and California, Hawaii and Vermont have numbers that are little better.

Kudos to Sher for discovering that the overcrowding data compiled by the province had serious errors. Good work. (Here is a second link to the story.)

Overcrowding of hospitals is a serious global problem and not unique to Ontario. Many industrialized countries do attempt to keep occupancy rates at or below 85 percent, just as Sher claims. And many, many hospitals throughout the industrialized world fail at the attempt.

Cuts hammering journalists

The headline warns "Cuts hammering elderly." Oddly, the online picture accompanying the story shows a happy senior being patiently spoon-fed by a caring health care worker.

The image is jarringly inappropriate and, no surprise, it is phony. It is a staged, stock photo image — stock photos are cheap but they are not journalism. I'd say cuts are hammering journalists, too.

Recently I briefly traded tweets with a local reporter who was offended when I called the balance in one of his stories "faux."

I not only stand by my previous comments but I'd like to expand upon them. The media in general, it is not just the local paper, all too often seem to believe that a story is not complete until it is balanced. They believe this until the cost of balance, either in time or money, is deemed too high.

Which brings us to today's article. My guess is the journalist was instructed to write a story on the report "Pushed Out of Hospital, Abandoned at Home" released by the Ontario Association of Speech-language Pathologists and Audiologists (OSLA) and the Ontario Council of Hospital Unions (OCHU).

Before continuing, I want to make one thing clear: I am not claiming the report is error-filled. I am simply saying that a story as inflammatory as this one demands context, demands balance. How does what is happening in Ontario compare to what is taking place outside the province? Are these local problems or are they endemic in the health care approach embraced in a multitude of places?

For instance, the report by the unionized hospital workers and some therapists tells us "one in six patients has an unplanned readmission within 30 days." My response is to ask, "How does this compare to the readmission rate for seniors in other localities?"

A little searching discovers a report, The Revolving Door, on readmissions in the United States. This American report tells us:

The U.S. health care system suffers from a chronic malady — the revolving door syndrome at its hospitals. It is so bad that the federal government says one in five elderly patients is back in the hospital within 30 days of leaving.

Where this all gets interesting is newspaper report places the blame on underfunding. The answer from the union et al. is simple: Throw money at the problem. But the U.S. report puts the blame on its badly fragmented health care system. According to the American report, if patients get the right care the first time many return trips are prevented. Done properly, this costs less money, much less money, not more.

According to The Revolving Door report out of the U.S.:

The [U.S.] federal government has pegged the cost of readmissions for Medicare patients alone at $26 billion annually, and says more than $17 billion of it pays for return trips that need not happen if patients get the right care. This is one reason the Centers for Medicare & Medicaid Services has identified avoidable readmissions as one of the leading problems facing the U.S. health care system and now penalizes hospitals with high rates of readmissions for their heart failure, heart attack, and pneumonia patients.

As a senior, in what I hope is just the early stages of congestive heart failure, I read the news report with great personal interest but I was left with more questions than answers. I know the reporter who wrote The Free Press piece and I am sure that that reporter was also left with lots of unanswered questions. Sadly, neither the reporter's questions nor mine will be answered. I blame cutbacks, newsroom cutbacks.

Take the congestive heart failure example. I keep returning to CHF because the news story told of a patient with CHF who was sent home after being taken to ER. As there isn't enough information in the newspaper concerning this incident, I read the report itself.

It seems the gentleman in question was 89 at the time he was admitted to the ER suffering from pulmonary edema. The doctor in ER immediately gave the gentleman Ventolin. This is widely accepted as a good first response. The ER doctor then wanted to send the gentleman home but his daughter fought this decision.

In the end she was successful at having her dad admitted to the ICU and given morphine. Morphine is a traditional drug for dealing with pulmonary edema but is falling our of favour. According to University Hospital, Cleveland, morphine is no longer indicated to treat pulmonary edema.

The daughter was happy with the morphine but upset about the Ventolin. I don't believe the daughter is a doctor. I'm not sure how much weight to give to either the daughter's praise or to her criticism of her father's care.

Survival times for those 80 years or older are often measured in months rather than years. The gentleman in question lived to be 94. Clearly, something was being done right for this senior. Cuts did not seem to be hammering his man, at least not until he hit 94. The fellow died after undergoing an gastroscopy during which the doctor apparently perforated his esophagus. He died from an actual medical cut.

A link to: Le Monde diplomatique

“If you don’t give the people social reform, they will give you social revolution,” Quintin Hogg, a leading light in the Tory party, told the British parliament in 1943.

I read the above in Le Monde diplomatique in a piece by Benjamin Selwyn discussing what he calls "development by the elite for the elite." I can't say I agree whole heartedly with Selwyn but his views counter the capitalist-apologist arguments I often see published in my local paper, The London Free Press.

If interested, here's a link to: The Working Class Does The Job. 

Follow the above link if you agree that the world’s workers should be paid what they are worth and  countries left to develop free of condescending international meddling.

Capitalism: The best system?

I posted this some time ago. Recent business closures in London, and the responses claiming capitalism is still the best system bar none, have made its reposting appropriate.
____________________________________________________________

"Even Paul McCartney has admitted capitalism is the best system. And he was a big pinko back in the day." [source: Dan Brown of The London Free Press]

I groaned when I read Brown's claims and then I thought this could be a blog post — and it is.

Paul McCartney caused a stir in 1972 with his song "Give Ireland Back to the Irish." The song was banned on the BBC. I'm old enough to recall all sorts of silly stuff being said about the Beatles when they were at their peak, but I don't think Paul McCartney was ever a communist — but that's just my opinion. Go google this and get back to me. I did, and failed to find a solid connection.

But, I don't think McCartney's politics are really relevant. You might say this talk of his being a pinko is a bit of a red herring. The statement in which we're really interested is: "Capitalism is the best system." True or false?

This is a hard one to answer, especially for someone who is not an economist. I'll attempt answer, of sorts, but I'm going to come at the answer sideways. I'm not looking to get deep into an economic or political argument.

My first thought is that when I was young I would have agreed rather quickly with the statement. But with the passing of sixty some years I've changed and it is has not only me that has changed but capitalism. Capitalism today is not the capitalism of my childhood.

I believe the boosters of capitalism would say this is a strength of the capitalist system. It adapts to meet the demands of the day. This sounds good on the surface but what does that mean in reality? Have the changes I have experienced during the passing of some six some decades made capitalism better? If not, maybe the best system was some version of capitalism now adapted out of existence.

My grandfather was born on a farm in Princeton, Ontario. He was an outstanding student and I understand that at his graduation it was said he was the youngest pharmacist in the province of Ontario. It's hard to prove the truth of this statement as he graduated back in the early 1890s. Let's just agree that he was one very bright young man.

On graduation, he went to the States to work for Cunningham Drug Stores. This was an up and coming chain. My grandfather had a chance to get in on the ground floor, make big bucks, but he declined.

He moved back to Canada, to Brantford, Ontario, where he started his own independent neighbourhood drugstore. He didn't get rich but he did have a beautiful wife and he raised a fine family. He never owned a car; he didn't need one as he walked to work. He lived in the type of walkable neighbourhood that is today thought so desirable. It was a different world.

Today, a young man graduating as a pharmacist would have a difficult time starting his own independent corner drugstore. The large chains pretty well control everything in the pharmacy business.

The Cunningham's Drug Store chain, the one my grandfather snubbed, went on to become one of the major players in the American Midwest but a few decades ago it was taken out by another player in the capitalist game. A lot of people lost their jobs.

When I was a boy, my neighbourhood had a least three independent drugstores. Each one employed people in the neighbourhood while providing an important service. There were no big parking lots at any of these stores as big parking lots weren't necessary. Most people walked to these drugstores — even the staff.

I worked for one of those drugstores. It became one of the first Big V pharmacies. Big V was formed by a small group of independent Windsor, Ontario, pharmacists intent on saving the neighbourhood drugstore. A few years ago Big V was taken over by the giant Shoppers Drug Mart chain. In 2013 Shoppers was bought by Loblaws in a deal worth about $12.4B.

Capitalism, the best system? I'm not sure that my grandfather would recognize today's capitalism. And I honestly believe that he would tell you the system under which he started his business, a business that lasted him a lifetime, was better.

Found a neat site featuring documentary films

While searching for something I would have thought was quite unconnected, I discovered a site called Top Documentary Films. I would tell you more but, other than the fact that the posted documentaries are free, I know very little about the site or the videos posted there.

After I have viewed some of the videos, I may reopen this post and add some more information.

Cheers.

Check it out,
Top Documentary Films

For lovers of French

As readers of this blog will know, I've been trying to learn French. Why? One, because I like the language, two because I find TV5, the French television network available on cable, is an excellent source of both movies and documentaries and three because my granddaughter is attending French public school. I wish to support the little girl in her effort to learn another language.

When it comes to reading French, I do fairly well. I often watch French movies and catch the gist of what is being said by turning on the French subtitles for the hearing impaired. Unfortunately, a lot of the newscasts are not subtitled.

What has me truly stymied is understanding spoken French. The words seem to fly by, merging together. To get past this hearing boondoggle, I have been listening to French songs and other sources of spoken French.

For my own education, I have posted a video of the French song Tu Trouveras sung by Natasha St. Pier. I have also posted the lyrics both in French and translated into English with links to the source on the Web. (I would appreciate any suggestions on improving the translations.)

If interested, listen to the song, check out the vocabulary and then take the test posted on Quizlet. Bonne chance! (Good luck!)




Lyrics to Tu Trouveras:                                         Lyrics to You Will Find:

Comme tout le monde j'ai mes défauts                  Like everybody I have my faults
J'ai pas toujours les mots qu'il faut                        I don't always have the right words
Mais si tu lis entre les lignes                                 But if you read between the lines
Tu trouveras dans mes chansons                           You will find in my songs
Tout c'que je n'ai pas su te dire                             All that I don't know how to say to you

Il y a des fautes d'impression                                There are wrong impressions
Des "Je t'aime" un peu brouillon                             Some "I love you's" a little muddle-headed
Malgré mes accords malhabiles                              Inspite of my clumsy chords
Tu trouveras dans mes chansons                            You will find in my songs
Tout ce que je n'ai pas osé te dire                          All that I haven't dared to tell you

{Refrain:}
Tu trouveras . . .                                                  You will find . . .
Mes blessures et mes faiblesses                             My wounds and my weaknesses
Celles que j'n'avoue qu'à demi-mot                        Those that I only say in a low voice
Mes faux pas mes maladresses                              My slip-ups, my blunders
Et de l'amour plus qu'il n'en faut                             And more love than is necessary
J'ai tellement peur que tu me laisses                      I'm so afraid that you are leaving me
Sache que si j'en fais toujours trop                        Know that if I'm always trying too hard
C'est pour qu'un peu tu me restes                          It's to make you stay with me a little
                                                                               longer
Tu me restes                                                          You stay with me.

Il y en a d'autres que tu aimeras                              There will be some others you will love
Bien plus belles, plus fortes que moi                        More beautiful, much stronger than me

[Je leur laisserai bien sûr la place                            Of course I'll give them my place       
Quand je n'aurai plus dans mes chansons                 When I don't have in my songs
Plus rien à te dire en face                                        Anything else to say in front of you
Le temps vous endurcit de tout                                Time makes you stronger
Des illusions, des mauvais coups]                             From illusions, from hard blows

Si je n'ai pas su te retenir                                        If I didn't known how to retain you
Sache qu'il y a dans mes chansons                            I want you to know that in my songs
Tout c'que je n'ai pas eu le temps de te dire             Is everything I didn't have time to tell
                                                                                 you

Le temps vous endurcit de tout                               Time makes you strong
Des illusions, des mauvais coups                             From illusions, from bad beats
Si je n'ai pas su te retenir                                        If I wasn't able to make you stay
Sache qu'il y a dans mes chansons                           I want you to know that in my songs
Tout c'que je n'ai pas eu le temps de te dire             Is all I didn't have the time to tell you

{au Refrain: x3}
Tu trouveras . . .                                                  You will find . . .
Mes blessures et mes faiblesses                            My wounds and my weaknesses
Celles que j'n'avoue qu'à demi-mot                        Those that I only say in a low voice
Mes faux pas mes maladresses                                My slip-ups, my blunders
Et de l'amour plus qu'il n'en faut                            And more love than is necessary
J'ai tellement peur que tu me laisses                     I'm so afraid that you are leaving me
Sache que si j'en fais toujours trop                       Know that if I'm always trying too hard
C'est pour qu'un peu tu me restes                         It's to make you stay with me a little
                                                                              longer
Tu me restes                                                        You stay with me.

[ These are Tu Trouveras lyrics on http://www.lyricsmania.com/ ]