A Grassroots Effort to Track the Side Effects of Prescription Drugs

A new word has entered the lexicon: “Pharmageddon.” Wiktionary defines it as “a dystopian scenario wherein medicine and the pharmaceuticals industry have a net detrimental effect on human health and medical progress does more harm than good.” We are fast approaching pharmageddon, as drugs are increasingly fast-tracked to approval and only later found to do little or no good, or, even worse, to cause harm. In 2010, the U.S. Food and Drug Administration (FDA) pulled the breast cancer drug Avastin off the market, after having fast-tracked its approval. Over $6 billion worth of Avastin was sold before two follow up studies showed that the survival rate of patients who took Avastin was no better than patients who took other drugs. Not only did huge numbers of women take this essentially worthless drug to treat their breast cancer, but the listed side effects of Avastin included conditions severe enough to merit  a descriptor of potentially fatal several times in the drug’s informational brochure. Another factor in prescription drug danger is the fact that drug companies are increasingly engaging in criminal behavior aimed at boosting sales at any cost. In 2009, the drug maker Pfizer paid a record $2.3 billion fine and pled guilty to a felony for illegally promoting its painkiller Bextra. Pfizer paid kickbacks to doctors and dished out perks, like massages and all-expense-paid trips to fancy resorts, to get doctors to prescribe Bextra for off-label, or unapproved, uses. Like Avastin, Bextra was ultimately pulled off the market due to safety concerns. This wasn’t the first or even the second time Pfizer had been caught marketing drugs illegally, either. It was the fourth time just  since 2002 that FDA had fined Pfizer or one of its subsidiaries fined for marketing its drugs in an illegal manner.

Taking prescription drugs is increasingly fraught with danger. Adverse side effects have risen over the years to where they are now a leading cause of death, disability, and illness.  It is estimated that only 1 to 10 percent of adverse drug events ever get reported to the FDA. Many people suffer side effects from prescription drugs that are considered “medically mild” but that are nonetheless disabling, like detrimental effects on memory, concentration, and judgment. Often people report adverse side effects to their doctors, only to be told there is little or no evidence linking their problem to the drug. This lack of information is not a mistake — it traceable to the fact that most of the data on prescription drugs is the property of  the pharmaceutical companies, since the companies run most of the clinical trials for the drug. Up to 60% of these trials are never publicly reported. For obvious reasons, companies have a vested interest in not fully disclosing the side effects of their products.

Recognizing the extent and severity of the problem of prescription drug side effects, Dr. David Healy, author of a just-published book titled “Pharmageddon,” along with group of people who, like Healy, have risked their careers to speak out about adverse drug events, are developing a free website where people can share information on the side effects they experience while taking prescription drugs.  RxRisk.org, in effect, aims to crowd-source real-time data about drug side effects, to create a fuller picture of exactly how these drugs  are really affecting people. The site accepts no advertising and is not linked in any way to big Pharma. Use of it is free and anonymous. The site also helps users research drugs they are taking. People who report information on the side effects they experience can get a free report they can take to their doctors, to encourage fuller and more informed discussion of their treatment. Doctors can also add information to their patients’ reports. RxRisk.org’s advisory board is comprised of people with relatives injured by adverse drug events, health care activists and independent scientists. The site is currently in beta development, but RxRisk.org is a much-needed grassroots effort to track the side effects of prescription drugs and build a record of them, so that it eventually it will become unreasonable to say the problem can’t be happening in at least some people. Visit the new, consumer-friendly drug-tracking website here.