“I want to quit my chemo. I can’t take the nausea. My drug is not available and the other things just don’t work.” It was November 2010 and in front of me sat a 50 year-old widowed mother of two with uncanny, pale green eyes and stage IV cancer; she shook with nerves and defiance. Her support drug was prochlorperazine, which has been around as long as I have. “That’s impossible!” I said and picked up the phone to call her pharmacist. He sounded weary, but politely explained that there was none left in the entire city. “But,” he added, “you can prescribe XXX.” Well, although XXX is fancy, new, and expensive, it did not work for my patient. I smelled a rat.
We quickly discovered that this “shortage” was just one of many that had been increasing for a year or more. With nine colleagues from the Kingston cancer centre, we wrote to both the federal and provincial ministers of health alerting them and asking for an explanation. The unhelpful replies were slow and cryptic.
The Canadian Pharmacists’ Association soon released the results of a survey that confirmed impressions that shortages were pervasive and had affected more than 90 per cent of the nation’s pharmacists, sapping valuable time as they sought supplies and substitutes for anxious clients. The report named the drugs most often affected, but curiously, it did not mention the fact that they were all generics. The CMA also conducted a survey in 2011 and found that a majority of doctors were aware of the problem too; the comments section featured many “hunches” that, somehow, “big pharma” was behind it.
As a clinician historian, I wanted to find out when the problem began. Was it really new? How it was evolving? And most of all, why? I started gathering news reports, official documents, and statements from concerned organizations. My office and computer desktop quickly became tangled with unconnected factoids and files.
When our letter was reprinted in the local newspaper, scientist Ted Hsu, asked to meet to understand what was happening. In late 2011, he would become the MP for Kingston and the Islands. As I moused madly around my chaotic desktop trying to answer his penetrating questions, he said, “You know, you should put all this stuff online. It could be useful, will set up a time line and measure the problem. And it will help you keep track—a virtual filing cabinet” In our heady brainstorming, we also imagined a blog component for “Patient Stories” to explore the characteristics of the problem.
With my patient's encouragement, we registered and launched canadadrugshortage.com in August 2011—fully five years ago. Tech advice came from my daughter, who runs an online humanities journal. We have no funding and do not want any. Every morning, I sit in my pyjamas, scanning the web for new reports and filtering emails from patients, caregivers, and Google alert. I type and post all the content myself.
The site offers information about the shortage, tracking it, especially as it affects Canadians. It does not purport to document individual shortages; that should be the job of Health Canada, which licences our drugs. But it quickly became obvious that this problem is global; its causes and solutions cannot be located within our borders. We now feature information about shortages in the United States and more than sixty other countries.
One of the first “discoveries” was the disappointing response to the Patients Stories blog. Far fewer patients than we imagined came forward. People affected by the shortages are sick, or shy, and don’t think about blogging. But others are utterly unaware. If their doctors change their prescriptions to something newer and more expensive, they assume it must be better. But health care costs will rise, insurance premiums will follow (as they soon did), and the ten percent of Canadians who don’t fill prescriptions for lack of funds will also increase.
The size and number of web pages grew. The Causes page now offers fourteen plausible explanations, each one of which is sufficient to produce a shortage. I suspect, however, that these causes operate in clusters and constellations at different times and places. The condescending assertion that drug shortages are “too complicated” to be grasped by mere medical mortals is inadequate. Somebody knows and is not telling. Solutions, so far, are nebulous, mostly because we do not understand the causes.
My website’s counter shows that it normally cruises well beneath the radar of internauts. But when a situation blows up – like the early 2012 fire at the Sandoz factory in Boucherville, or a crisis in anticonvulsants for kids, or a sensationalist interview, hits will skyrocket for a day or two. Sustaining interest and connecting the dots between apparently disparate events seems to be beyond the state of investigative journalism in our time.
I’ve learned a lot about this problem. But I still don’t know why. What do you think?