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Stand by for a tsunami of public accountability
 

Alan Cassels

 

Last month, PricewaterhouseCoopers, an accounting and consulting company based in New York, published a report saying the global pharmaceutical market will double in value to $1.3 trillion by 2020. The report stated that warmer temperatures brought on by climate change will drive up rates of respiratory illness and infectious diseases and people in northern climes will begin to be exposed to malaria, cholera, diphtheria and dengue fever.
Pharmaceuticals is not the only industry seeing new opportunities in the changing world maps of disease and demographics. For drug makers, global warming is just another fortunate market driver, sure to increase demand for more drugs, just like the perceived greying of the population has made many pharmaceutical investors feverish with delight.
Here at home, BC politicians have seen much doom and gloom stemming from an “aging” demographic; during his watch, former Minister of Health Colin Hansen referred to the aging of the population as a “tsunami” and his colleague, MLA Katherine Whittred once introduced a new piece of legislation that she said would “… address the needs of BC’s growing and rapidly aging population." Liberal MLA Ralph Sultan, whose name has graced these pages in the recent past, best sums up the gestalt of our times: “In 21st century medicine, we’ve come to respect three big health cost drivers: new technology, the proliferating pharmacy and increased consumer knowledge and expectations. However, it is longevity that now looms as the greatest cost driver of all.”
Yup. We’re getting old and the health care bills of the aged are going to break the bank. Bad news for all of us, but the mother lode for those who sell health services and drugs. Colin, Katherine and Ralph are not unique, as other politicians around the world wring their hands at the coming tsunami. Problem is they’re blaming the wrong culprit.
Simply put, the aging phenomenon is a myth. Canadian society is not going to go broke overnight due to rapidly aging people clogging up our hospitals and doctors’ offices. The truth is, as a population, it is healthy people, not old people, who are disproportionately using more and more health services – more doctor visits, more tests and more drugs – and those costs are forever mounting.
Here’s my favourite, new soundbite: It is not the aging of the population, but the gouging of the population that is causing health care systems to bleed red ink.
Morris Barer, a health care economist at UBC, wrote over a decade ago that population aging is actually a very gradual phenomenon – more like a glacier than an avalanche – and that an aging population adds about one percent each year in total healthcare costs for all of us. Some tsunami. Yet the myth continues. If there is a lot of profit to be made in telling healthy people they’re sick, there’s even more political capital to be made in blaming aging boomers, rather than business opportunists, for the perceived problem of health care sustainability.
Let’s not fault politicians for swallowing popular myths, but we can and should fault them for making health care funding decisions based on mythical thinking. Later this year, the BC government will make a major sea-change in its coverage of Alzheimer’s drugs, a decision that may cost BC taxpayers as much as $30 million per year. The cholinesterase inhibitors, the key drugs for Alzheimer’s disease – Aricept, Exelon and Reminyl – cost about $5 per pill. These drugs are covered in other provinces, but not in BC. This has had the drug-funded groups, the specialists and the manufacturers crying foul for more than a decade. It looks like the government is about to throw in the towel.
Why BC has maintained its policy of non-coverage of Alzheimer’s drugs is an interesting question. The answer is complex, but let’s just say the “Left Coast” has a culture that may be marginally more successful at putting science ahead of lobbying. At least that’s what Minister of Health George Abbott alluded to in the legislature when asked about BC’s intransigence on Alzheimer’s drugs. “What we do in an evidence-based approach is look at the efficacy of the pharmaceuticals themselves. We don’t respond to the efficacy of the lobbying behind the coverage of those pharmaceuticals,” he said. He went on to explain that BC will be “studying” the issue over the course of three years, to determine the effectiveness of these drugs in the “real world.”
The key issue around any health care spending is knowing what you are buying. Unfortunately, the major Alzheimer’s drugs are next to useless for most people. They also have a number of adverse side effects that range from the merely unpleasant (nausea, vomiting and diarrhoea) to nasty (agitation, delirium and violence) to fatal (i.e. death). As if the disease isn’t bad enough on its own.
The effectiveness of Alzheimer’s drugs is measured by a patient’s score on a scale called the Alzheimer’s Disease Assessment Scale – Cognitive (ADAS-Cog) – which measures cognitive functioning. A patient taking one of the four Alzheimer’s drugs will score an average of 1.4 to 3.4 points better on the 70-point scale than those on placebo. Is this meaningful?
Sounds like a washout to me. Dr. Todd Golde, a neuroscientist at the Mayo Clinic, was recently quoted in the National Post about the major Alzheimer’s drug trials: “The change in mental status was so small, the average caregiver of a patient would have no way of knowing there was any difference,” he noted.
So is it worth paying $30 million to improve a person’s cognitive function, at best by three points out of 70, even when his caregiver can’t tell the difference?
What about the fact that many of the patients taking the drugs, in addition to their continuous cognitive decline, now also feel terrible? Or may die prematurely because of the drug?
All good questions. Alzheimer’s is a terrible disease that affects entire families and the desperation of family members is undeniable. We all would hope that a three point improvement might ease the pain and bring our parents back. Perhaps the saddest thing in the world is seeing someone you love lose their ability to recognize you. The slow loss of that person’s independence is particularly hard. Drug treatments for Alzheimer’s would really be worth the coin if they allowed older people to be able to function longer in their own homes. Sadly, the one major, independent trial to demonstrate if the drugs delayed institutionalization, published in the British journal, the Lancet, showed that they failed on this measure.
By the way, the power of anecdote is astonishing. But for every anecdote where someone swears by the drugs for their mother, “They brought her back,” etc, another person will say it made their father so miserable he wanted to die. That’s why science, as opposed to anecdote, should gird any decision about whether this is an intervention worth public money.
What about alternatives? Some researchers have suggested that better nutrition or nutritional supplementation, along with mental and physical stimulation, access to games, music and sufficient caregiver support are all crucial to the well-being of people with Alzheimer’s.
The most crucial question we need to ask then is where, among all the interventions and supports that could be funded to maximize the well-being of people with this disease and their families, could $30 million best be spent?
Citizens deserve to know how governments decide what to spend their money on, and if those decisions can be well supported and defended. In the case of Alzheimer’s treatments, we might ask which specific criteria the Ministry of Health used to decide that sending up to $30 million of BC taxpayer’s money to New York and Basel (headquarters of Pfizer and Novartis respectively) was the wisest choice amongst other alternatives, such as funding better local caregiver support, respite care or community care for Alzheimer’s sufferers?
What about public accountability? Let’s face it; $30 million is a lot of money for treatments that don’t work for most patients and which generate a host of unpleasant side effects. The first and last word on this issue has to come from Henry McCandless, a retired auditor with the federal government, who lives in Victoria and literally wrote the book on the subject. His A Citizen’s Guide to Public Accountability: Changing the Relationship Between Citizens and Authorities (Trafford Publishing, 2001) stresses how citizens must understand how to apply the precautionary principle to civics, so that public decision-making and decision makers can be held accountable.
Citizens holding governments really and truly accountable on health care spending? Now that’s a tsunami I’d like to see building. At the end of the day, we citizens need to say: “We’re alive, active and involved. We’re concerned about how major health care decisions are being made and it is not unreasonable for us to ask our elected leaders to answer for their decisions.”

Alan Cassels is co-author of Selling Sickness: How the World’s Biggest Pharmaceutical Companies Are Turning Us All Into Patients and a drug policy researcher at the University of Victoria. His new book, The ABC’s of Disease Mongering: A Guide to Drugs and Disorders (Emdash Book Publishing), will launch in October.
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