Read Pharmageddon for Free Online

result doctors now report fewer than 5 percent of serious adverse events on treatment. Faced with this lack of reporting, American and European regulators have allowed patients to report on the adverse effects of drugs. But the new systems put in place for online reporting by patients are not user friendly. Minimal information is sought rather than the greatest amount of and richest possible details. Other than for altruistic reasons, or out of anger, there is very little incentive for a patient to report.
    Consider what could be done. Roughly 25 percent of serious events have not been reported before, but whether reporting on a new problem or a problem already featured on a drug's label or elsewhere in the world literature, there is still a matter of deciding when I turn blue on a drug known to cause some people to turn blue, if in fact my blue hue is linked to treatment. There are standard ways to check out the likelihood of a linkage by noting the time of onset of the problem, what happens if the drug is stopped or the dose reduced, what happens if the drug is reintroduced or the dose increased, whether I have ever had reactions like this before on another drug, and whether anything else makes a difference. This approach can also help us decide if a drug might be linked to a problem never before reported.
    Imagine if on making a report you were taken through these questions and then issued with a letter from an expert website to take to your doctor outlining the suspected reaction and the factors that in your case might help you and your doctor decide if there is a link to treatment. Imagine that this letter also lays out a case to your doctor that in-person, professional observations as to whether your treatment was likely to be linked to the problem are at the moment much more credible than the clinical trial data, and then invites your doctor to supplement or take issue with your report.
    A few days later on the basis of the best possible input from both your doctor and you, when the reaction is coded and the database to which you've reported can assess how many other reactions like this there have been, imagine both you and your doctor get letters letting you know that a thousand other people have reported a similar problem and a hundred other doctors have endorsed a link between treatment and the effect. If 80 percent of medical reporting is likely to be correct, there comes a point where, even if the clinical trial data says otherwise, it is just not reasonable to say the problem can't be happening in at least some people. This compilation of individual reports offers your doctor and you a variation on an age old strategy—if you're going to owe the bank money, it is best to owe so much the bank has a problem—in this case it will be regulators and companies who have the problem. Far from being inaudible you and your doctor have been handed a megaphone.
    Now take one more step. Hundreds of billions of dollars have been pumped into genomic research but very few genes have been found for major illnesses based on studies that have recruited tens of thousands of patients. Researchers have found small genetic risks contributing to common diseases like diabetes, hypertension, or mood disorders but little else. However in the case of clearly described adverse reactions to drugs, studies may only need to recruit fifty to a hundred people to find a gene coding for the treatment-induced problem. This makes sense as treatment effects have to be mediated biologically and a striking reaction to a drug is much more likely to be mediated through a single protein than is a complex condition like diabetes.
    Getting us and our doctors to report on effects and work together to clarify the nature of the problem—whether turning blue on treatment involves two different conditions with one being turning blue from the waist up and the other blue from the waist down—will set up exactly the kind of conditions that make it