Are patient groups actually representing the interests of patients?
DRUG BUST by Alan Cassels
• Who says “near death” experiences don’t pay?
Welcome to the crazy world of ‘emergency capitalism’ where a rare – but sometimes life threatening – condition is turned into a very lucrative market with the help of skilful fearmongering, the co-opting of patient groups and the buying of experts.
I’m talking about food allergies, the life-threatening type, given we seem to be living in an increasingly allergic world. Food allergies are particularly worrisome because, well, we are surrounded by the stuff. Most of the serious allergies are related to peanuts and tree nuts, milk, eggs, fish, shellfish, soy and wheat. A hyper-allergic reaction, known as anaphylaxis, is where your body goes on a major offensive in response to an allergen. It can often involve multiple body systems – including gastrointestinal, skin, breathing – and it sometimes leads to respiratory and cardiac failure and death. Some people only need a whiff of an allergen to send them over the edge.
Thankfully, for those at risk of an anaphylactic reaction, the drug epinephrine, also known as adrenaline, is packaged as a self-administered emergency medicine. It can basically save your life long enough for you to get to a hospital. As a “use only when required” drug, it is most commonly injected through a self-administered auto-injector into thigh muscles. The two kinds available in Canada are Allerject by Sanofi and Epipen, a Mylan product distributed by Pfizer.
Commercial drug makers are always driven to increase sales and market share, but how do they expand the patient population of those at risk of a life-threatening allergic reaction? Maybe they do the easy stuff first: take a product costing pennies to make, package it in a fancy auto-injector, stamp a one-year expiry on it – most of you would blow a gasket if you knew about the fraudulent use of medication expiry dates – charge $120 for it and get parents, school boards and others to stock it. Above all, push the fear because we all know fear sells.
How common is an anaphylaxis death in Canada? An Ontario study found 80 anaphylactic deaths over a 25-year period. Extrapolating those Ontario numbers across Canada, it would mean about eight deaths per year in Canada. So, not big numbers, but let’s face it, the fear factor hovers large especially if your kid is one peanut away from possible death. What this results in is a strong cohort of hyper-vigilant, internet-savvy mothers (and fathers) who work hard volunteering to raise awareness about life-threatening allergies. The fact that there are so few deaths due to anaphylaxis in Canada is likely due to the work of those parents.
But, as I’ve seen in other patient groups, where there is a high degree of consumer involvement in a disease, there’s also a high degree of interest from companies wishing to tap into this ‘patient engagement.’ Sold as a harmonious alignment of interests between the momma bears – bent on protecting their cubs against any allergens – and the companies selling allergy-related drugs and paraphernalia, it’s easy to forget how much money is at stake. We’re talking billion-dollar industries, not just for epinephrine injectors, but for skin prick tests, inhalers, steroids, specialty foods, antihistamines, oral immunotherapy and so on.
One of those moms very focussed on this issue is Chantelle Olsson. She became involved in the world of life-threatening food allergies when her two-year-old daughter was diagnosed with a peanut allergy. She remembers people asking, “Why aren’t you doing more to prevent this?” Reflecting on this, she thought, “Yeah, why aren’t we doing more?”
In an interview from her home in Langley, BC, she told me she’s most interested in prevention and working to reduce the numbers of children affected by allergies. Her group, Families for Anaphylaxis Education, is different than many other groups working in this area in one important way: they don’t take money from the pharmaceutical or food industries.
In the allergy world, pervasive conflicts of interest exist. For example, Food Allergy Canada (formerly Anaphylaxis Canada) gets some of its money from ‘corporate partners,’ which are mostly food companies and the makers of the epinephrine auto-injectors.
Whether a patient group takes corporate money or not almost always determines their priorities. So why has there been such a rise in food allergies in recent years – maybe as high as one in 13 school-age kids? Could it be due to the way foods are grown or processed or because of the numbers or contents of vaccines, which have changed enormously over the last 20 years? Are kids being exposed to allergens too early, or too late? Should we care that a company making widely used childhood vaccines also makes one of the most popular epinephrine injectors? Who funds research looking at possible links between drugs or vaccines and the rising numbers of allergy-affected kids?
These uncomfortable questions are sometimes bandied about in a rich internet-based world, on parent forums and discussion groups. Parents of children who could suffer anaphylactic reactions have a lot in common and they are adept at using social media to make the allergy-infested world safer for their kids. Like in other disease areas when the industry-supported patient groups put their own spokesparents and trolls on social media parent forums, they are deciding what is or isn’t a legitimate discussion topic.
I’ve scrutinized the public relations world and Big Pharma for 20 years so I find it fairly simple to spot the ‘astroturf activists’ – the ones who are coached by a company’s PR department and who use slick talking points and send out attack trolls to rebuke criticisms of the industry. Question Big Pharma’s involvement, priorities or tactics on a Facebook allergy forum and you’ll likely get bitten by a troll or even booted off the forum.
Another popular tactic is the care and feeding of the ‘good mommies.’ Google “Mylan’s Food Allergy Blogger Summit” and you’ll see the story of 13 well-behaved mommy activists sent to Disneyland on the Mylan payroll, openly declaring their thanks to the company paying for their astroturf adventure with Mickey Mouse.
There seems to be a revolving door between the drug industry and the food allergy charity world. For example, allergist and immunologist Dr. James Baker was appointed last year as the new CEO of FARE (Food Allergy Research Education), a large American industry food allergy charity. The former senior vice-president of Merck’s Global Vaccine Division made his priorities clear when he took over the helm at FARE: “I’d like to make sure that we continue to work for access and, very importantly, for appropriate care for patients with food allergy.” In other words, our priority is moving product. No sense in focusing on prevention.
Chantelle Olsson is correct when she tells me “prevention is a four-letter word.” And concerned that no one’s taking prevention seriously, she adds, “The market for epinephrine injectors and allergy products is limitless and, unless we take action, we might easily see 50% of Canadian children with life-threatening food allergies within five years.”
With such little energy devoted to learning what is causing the spike in allergies in the first place, and tons to be made in pumping out grossly inflated $120 auto-injectors of epinephrine – needing annual replacement – the prevention message seems to be a low priority. Especially when it’s controlled by drug companies.
I’ve often written about the problems of conflicted patient groups – irritating people who contact me to defend their actions. I think most of these people are hardworking, dedicated volunteers working to make the world a safer place for their children. But, at the same time, they may be unable to see how their funders bias them and their priorities.
Many patient groups do honest, important, public-interest work without industry support. They may be poorer, but they can be authentic and able to avoid the massive delusions that come with being tools of industry.
Alan Cassels is a drug policy researcher at the University of Victoria. He writes about medical screening and drugs, consults with unions on drug benefits plans and is helping research tools to make deprescribing easier for physicians. You can read more of his writings at www.alancassels.com or follow him on twitter @akecassels