Earlier this week, TV host Jimmy Kimmel told his studio audience, multiplied by millions on line, about his infant son’s emergency heart surgery.
Kimmel choked up as he described the events. A normal birth. In fact, an easy birth. Then, three hours later, an alert nurse noted a heart murmur, a purplish skin tone. A newborn infant rushed into surgery to repair a hole in his heart wall and a sticking valve.
No one that I heard of identified the cost of saving the Kimmel baby’s life in the American health system. But Kimmel made the case for universal medical care when he said, “If your baby is going to die and it doesn't have to, it shouldn't matter how much money you make.”
Canadians, watching those TV clips, might have felt complacent. After all, we have a universal “single-payer system” that covers those costs.
Don’t we?
Maybe not. Recently, I’ve been hearing about a drug that B.C. and several other provinces refuse to pay for.
New kind of treatment
The drug is Orkambi. It is, apparently, the first drug in the world that targets the causes of Cystic Fibrosis, instead of just the symptoms.
As it happens, I know a little about Cystic Fibrosis – a little, I hasten to add, but still more than most people -- because we had a son with CF.
CF is totally an inherited illness. A person with CF has to inherit a recessive gene from both parents, each of whom got the gene from one of their parents, who got the gene from… well, the chain could go back many generations. I stress this because CF patients cannot possibly be accused of contributing to their own ill health by diet, lifestyle, negligence, or even ignorance.
But for-profit insurance systems could consider CF a “pre-existing condition,” thus making it ineligible for coverage.
CF affects mainly digestion and breathing. Cells in the pancreas and the lungs excrete thicker-than-normal mucus that clogs tiny transmission channels for enzymes or air.
In the lungs, these blockages lead to recurring infections, pneumonia, and ultimately lobes as dead as old leather boots. Eighty per cent of people with CF in Canada will eventually die of lung-related complications.
It’s a progressive disease. Treatment, until now, has consisted of trying to slow the progression – jiggling mucus out of the lungs with physiotherapy, diluting it with inhalants, or, in the worst cases, replacing dead lungs with healthy transplants.
Our son would have been eligible for a transplant if he had lived another five years. He didn’t.
The high cost of living
Cystic Fibrosis Canada, the charitable organization that funds both research and treatment, endorses Orkambi for individuals with two copies of the F508del mutation of the CF gene – approximately 1,550 persons in Canada, 150 in B.C.
In clinical tests of 1,108 individuals, Orkambi demonstrated improved lung function, reduced lung infections, fewer hospitalizations, and slight weight gain.
Health Canada approved the drug over a year ago. But it is fiendishly expensive. About $250,000 a year. Per person.
Again, I have personal experience. When our son was diagnosed with CF, his pills alone would have taken 25 per cent of our total annual income. Medicare did not cover those drugs. Later, the Ontario government agreed to cover CF medications. But at the time of diagnosis, to get government funding we would have had to go on welfare.
Fortunately, I had – almost accidentally – signed up for a company health plan which would pay 80 per cent of drug costs. The costs staggered the plan’s financial forecasts. I heard, second hand, that its directors held several meetings to decide whether drug coverage should cover such extraordinary expenses.
They decided it should. And our son got 15 more years of pretty good life.
Difficult decisions
Forty years later, though, the B.C. government has refused to fund Orkambi for those 150 CF patients. (In fairness, a national drug advisory committee recommended against Orkambi – not because it doesn’t work, but because of difficulties in diagnosing when NOT to use it.)
Paying for those pills would cost B.C. over $37 million a year. (Which is roughly twice what the CEO of Canadian Pacific Railway gets paid. But that’s beside the point. I guess.)
Is it worth spending that much for so few?
To paraphrase Jimmy Kimmel’s words, no parent should ever have to decide whether they can afford their child’s survival.
But someone, somewhere, does make those decisions. In B.C., they have ruled that some people’s lives are not worth $250,000 a year.
I hope they can sleep comfortably at night.
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Copyright © 2017 by Jim Taylor. Non-profit use in congregations and study groups encouraged; links from other blogs welcomed; all other rights reserved.
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YOUR TURN
The point of last week’s column about the knitting cooperative in Bolivia was, of course, that’s even the most valuable projects will eventually fail unless the current volunteers find some way of passing the torch.
Dale Perkins remembered his experience with Sol Alinsky: “We repeated the mantra – ‘the hot life of any organization is about five years’. After that the organization had to be re-organized, with new leaders located/brought in to mold and operate the organization -- that kept the organization viable and progressive. Too often the first leaders get embedded in the organization. The institutional church could learn that in spades -- enough of “looking for warm bodies to fill positions in church leadership” approach that so many congregations adopt. Very little (or nothing) done to mentor new volunteers, and it shows.”
Tom Watson agreed that succession “is a huge issue just now. Service clubs are dying on the vine as their members grow older and new, younger, members are not replacing them. As the membership dwindles the organization's capacity for holding projects to raise funds to support special causes.
“High School students in Ontario need 40 volunteer hours in order to graduate. That's 40 hours over four years, 10 hours per year. Some students far surpass this rather low standard, while a good number of others somehow find they're coming to the end of grade 12 and haven't bothered yet to accumulate those 40 hours. The difference? Seems to me it's that the volunteers have learned that if each of us does something to help make our community and world better we all benefit.”
But simply forming an organization wasn’t the right answer for Jim Henderschedt: “ I fear an organization taking over because of the addition of overhead costs, I applaud the volunteer system that works to provide for others, and will pray for the Holy Spirit to raise up (resurrect?) someone or a team who will help keep the knitting needles clicking so that others may enjoy quality of life.”
Lyle Phillips told of an “umbrella organization” that already maintains a pool of volunteers: “Here in Langley, BC we have just such an organization. They have a website: www.langleyvolunteers.ca, an email address and a telephone number. They have a pool of volunteers who are called upon whenever a volunteer is needed. They may have a volunteer or group of volunteers who could take over the worthwhile work of public sale of Bolivian sweaters.”
Clare Neufeld also had recommendations: “May I suggest a collaborative effort between United Church of Canada and MCC Canada to take on the long term benefit.”
Don Nazrude thought volunteering was so important, he shared a couple of his own experiences: “In Canmore our United Church started to help those in Guatamala to install proper stoves. People in rural areas would just use a campfire in their homes to cook and heat. Our program was written up in the United Church Observer a while ago. Along with the Anglican church, we started Food and Friends for the poorer segment of our town. It has grown until we now serve on average slightly over 100 a week.”
Peter Scott wrote, “I think you hit upon both the strength and the dilemma of volunteerism. Volunteers don't make succession plans because that is not the nature of volunteering. Volunteering is like being a good neighbour. If your neighbour's barn burns down you help rebuild it. If he/she has a heart attack you plant his/her crops for that year. Volunteerism at its core is a person-to-person response to a perceived need that the volunteer can meet. When the need is passed or the volunteer is unable to continue there is a natural end to the interaction. Whether we think that is good or bad is irrelevant. It just is.
“Perhaps the downfall of the Christian church began, as Ivan Illich suggested, when individual Christians (volunteers) ceased to keep a candle, a spare mattress, and a piece of bread in the house in case the Christ should come to them in the night in the form of a person in need, and they began to pay others to do the basic Christian work of hospitality on their behalf. As a fellow minister once said to me: ‘People pay us to be good on their behalf, but maybe we should get real jobs and be good for nothing’. Maybe that day will soon be upon us.”
The column provoked James Russell to send along a collage of thoughts about volunteers, declining churches, urban developments, and property values. And, oh yes, the responsibilities of volunteers.
I won’t print the whole letter (although some of his ideas are likely to show up sometime in my own writing, but perhaps this paragraph conveys his concern: “No thought goes to the public who provided the original church grants and/or tax relief that allowed the churches to be built and to operate. The public-use and non-commercial nature of the property disappears. The communities lose their hubs (meeting spaces, volunteer centres, practical schools for moral living, homes of suppers and sing-alongs...). Life becomes narrower and more subject to plutocracy.
“The plutocrats build more condos.”
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TECHNICAL STUFF
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PROMOTION STUFF…
Ralph Milton ’s latest project is called “Sing Hallelujah” -- the world’s first video hymnal. It consists of 100 popular hymns, both new and old, on five DVDs that can be played using a standard DVD player and TV screen, for use in congregations who lack skilled musicians to play piano or organ. More details at www.singhallelujah.ca
Ralph’s HymnSight webpage is still up, http://www.hymnsight.ca, with a vast gallery of photos you can use to enhance the appearance of the visual images you project for liturgical use (prayers, responses, hymn verses, etc.)
Wayne Irwin's “Churchweb Canada,” an inexpensive service for any congregation wanting to develop a web presence, with free consultation. <http://www.churchwebcanada.ca>
I recommend Isabel Gibson’s thoughtful and well-written blog, www.traditionaliconoclast.com
Alva Wood’s satiric stories about incompetent bureaucrats and prejudiced attitudes in a small town -- not particularly religious, but fun; alvawood@gmail.com to get onto her mailing list.
Tom Watson writes a weekly blog called “The View from Grandpa Tom’s Balcony” -- ruminations on various subjects, and feedback from Tom’s readers. Write him at tomwatso@gmail.com or twatson@sentex.net