We received an overwhelming amount of email to our program Price of a Life
which aired Oct. 27 and 29. Brian visited Jamie McKinley,
a New Brunswick man who has glioblastoma multiforme or GBM.
His only hope
to extend his remaining life is a drug called Avastin
-- which comes
with a $10,000-a-month price tag. He can't afford it. His province's
medicare plan doesn't cover it. It's only one of a long and growing list of treatments that are prohibitively expensive for patients and provinces. In the show we asked the questions: how much are provinces willing to pay to prolong a life? And, how do they decide who gets treatment? That question provoked many of you to respond. Here are some of your emails.
Sharon MacLeod, Sechelt
It makes my blood boil to
hear drug companies say they can't lower the price of life saving drugs.
I once worked for a doctor who was independently wealthy and practiced
medicine as a hobby. He was married to someone who is also a doctor.
When they had their first child a drug company supplied them with a
year's diapers and formula. That is only one example of the bribes drug
companies pay out. Don't tell me they can:t lower their prices. Do you
know of any doctors who haven't received huge 'gifts' from drug
companies. Makes me sick.
Laura Brown, Winnipeg
I had several reactions to the story of Jamie and Avastin. First, a part of the conversation needed on the cost of Hail Mary drugs is the relationship between cost and the probability that a drug works. Steven Lewis pointed out that Avastin is not cost effective. The extra step is for us to realize that one reason these Hail Mary drugs are so expensive is that they are usually not proven to be very effective. The drug companies must try to get their money back as fast as possible, because there is a real possibility that further study will show the drug is completely ineffective and become de-listed, or another company will find a drug that actually works. The drugs that work well can be priced lower, because they will have a larger market.
When I hear of a $10,000 or even $30,000 per month treatment, I automatically wonder how effective the drug really is. Avastin was not shown to extend life, even though it might help Jamie. Second, The truth is that we all make decisions about what we are willing to do and how much we are willing to spend to extend our lives. One of the many choices that Jamie and his family has made is not to move to get the treatment. Avastin is covered here in some provinces. Canadians can move to other provinces. Jamie and his family are making extremely difficult cost-benefit decisions with financial constraint, just as New Brunswick and other provinces must. Some things are awful, and when faced with them, we can only choose the best of many bad outcomes. Third, the other side of the equation on health spending is taxes. I don't know if New Brunswick has higher or lower taxes than Manitoba. I do know that it is hugely important for us to be willing to pay for civilization, including good health care. When we are hit by a catastrophic illness, we should also ask if the last tax cut was worth it, along with all the other difficult questions. I feel compassion for Jamie, but I also feel compassion for the officials and politicians who need to consider the needs of a dying man as well as children with autism, burn victims, and even those who would die if our bridges collapse. They are usually depicted as heartless bean counters. I suspect that they have sleepless nights facing very difficult decisions every day, and then put on their game faces and go defend the choice they had to make.
Dianne Harper, Thorold
A timely show since I had a conversation with my mother yesterday about this since she takes Avastin for an off-label use, to dry up blood vessels in her eye. Never one to let an injustice pass, my mother blasted an eye doctor's waiting room full of other patients waiting for their Avastin shots. They were all complaining about the $100 charge, so she told them in no uncertain terms that they should be grateful since the cost was $1000 a shot and the government was picking up the rest of the tab, not to mention the tests beforehand they all needed to take beforehand, which amount to about $500. So, for $100 they got a $1500 treatment that would save their eyesight, a great deal in my mother's view. They all shut up and she has never heard another complaint on her subsequent visits. If only more people would be more grateful for what we are given.
Karen Philp, Volunteer Executive Director Canadian Patient Coalition
Thank you for your thoughtful program today on patient access to expensive drugs. This is such an important conversation that patients, families and caregivers want and need to have with government officials, health policy experts, the medical community and the pharmaceutical industry. Society needs to talk about how we are going to afford the significant advances being offered by the newer medications including biologics to tackling cancers or chronic diseases. No one wins when government formularies are overturned by elected official reacting to media stories of desperate patients, families and caregivers.
The question is why won't government provide Canadians with the forum for this conversation? Why are patients, families and caregivers kept out of decision making that directly impacts them? There are public processes in place for most environmental policies across Canada, yet health and medication access decisions are taken without any involvement from the majority of Canadians. This approach is as threatening - and perhaps more threatening - to the sustainability of Canada's health care system as the costs of new therapies and technologies. hank you again for having this important conversation today.
Lois Adams, Toronto
I totally understand the New Brunswick family's predicament. But I don't think the question is "What if it was me?" That's very touching and makes a lot of sense, but the question is really something to the effect of "what if it was me OR our healthy grandchild that needs intensive care after an accident." Meaning -- what ever money is spent on the husband is NOT spent on someone else. And if the question is asked with TWO of your own family members...it brings triaging closer to home! It's a more realistic question.
Carmen Marianovits, Saskatoon
Thanks to Stephen Lewis, your guest, for his comment, " We need to face our mortality". Always we seem to be striving for longevity. This comes at a cost, financial and emotional. And to what end, what quality of life can be maintained with invasive treatments. We are going to die, some of us sooner and some of us later. What puzzles me is the prevalent attitude of entitlement to any treatment that will postpone death. Is that really something to strive for? I am the mother of 2 young adult sons. I have recently, in consultation with them, written up a health care directive, regarding myself. It was one of the most rewarding and releiving things I have done. It opened the discussion of death in our family and it gave us each an opportunity to discover how we thought about our own mortality and medical treatments. Many thanks to Stephen Lewis and yourself, Brian Goldman, for raising and discussing the topics in this week's program. Keep up the excellent work on this program.
Stephanie Mokrycke, London
I have recently listened to "The Price of Life" podcast. It seems to me that the idea we appear to have in Canada about "end of life" is problematic. The terminology we use suggests that just because the patient is dying they become less of a person. I believe the "end of life" is just as much a part of life as the beginning of life, and with that it deserves the exact same reverence, respect, and care as any other stage. Health care should not taper off toward the end. I think the important thing to remember is that this person is still living, and should be treated exactly so. Perhaps we should stop making ghosts of patients diagnosed with terminal illnesses.. with that I imagine the tough political decisions concerning funding expensive treatment would no longer be a question.
Six Nations of the Grand River
I listened to bits and pieces of the show today, I'm walking in and out of rooms
as the radio is on. As I heard it, and what they where saying regarding the government stepping up to the plate in products that can help those who want to live. Yet the government is all bent regarding those who are in such a state of terrible health they are being forced by law to live. Hmmmm.....something's not right here. The money used on trying to keep those alive who want to go peacefully could be used against those who have a better chance and want to live.
Roedy Green, Victoria
The patients who are demanding free Avastin costing $10,000 a month deny there
is a finite pot from which all medical care in BC must be paid.If you
blow $120,000 a year on an very iffy Avastin treatment it means somebody else,
or elses, will be denied $120,000 a year of medical care. That may mean
means less scrupulous sanitation of hospitals, or going without some lab test
equipment. We must spend our money to get the most bang for the buck, no matter
how big the pot is. Whether providing Avastin is a good idea depends mainly on
how relatively pressing other needs are competing for those funds. It would be
nice to fund all drugs, for now, we cannot afford to. Remember
the debate about funding HIV drugs? Many people argued for letting everyone but
the wealthy HIV+ patients die, even when the amounts of money required were much
lower, the effectiveness was higher, and there was the contagion penalty for
non-treatment. I suspect we could get much more bang for the buck with
widespread improvements in mundane care, and sacrificed some of the bleeding
edge stuff. That would force the prices of drugs like Avastin down.