The Right to Profit vs.
The Right to Know

Johanna Ryan
11
185

For the past year I have been working with www.RxISK.org, the grassroots patient-rights and drug-safety project started by Dr. David Healy.  Recently I’ve joined their Community Advisory Board, composed of activists who are also survivors of drug-induced harm.  My involvement has its roots in my own thirty-year history of depression and the medications I’ve been given over the years in the search for a “cure.”  What I’ve learned from that history, more than anything else, is that I can’t trust my welfare to any group of experts – because the experts themselves are increasingly under the control of drug companies and other for-profit interests.  I have the right to know the facts about the benefits and risks of any treatment I’m offered – and I have to fight for that right.

A recent lawsuit filed by AbbVie Inc., the leading pharmaceutical giant in my hometown of Chicago, brought home to me just how important this is.  It may be the most significant health care case in years, and one of the most dangerous.

RxISK has launched a petition calling on AbbVie to drop its lawsuit and give us access to the facts about prescription drugs.  You can sign it here.

The stakes are high, both for drug company profits and for patient’s lives.  Here’s why:

For years, drug companies have sought to boost sales by hyping the benefits of new drugs while downplaying their risks.  A couple of years ago the European Medicines Agency (equivalent of the FDA) set up a program to grant public access to all clinical trial results used in the approval of new drugs.  The program was hailed by activists and researchers around the world as a big step forward for patient safety.  Now AbbVie, along with another U.S. drug firm called Intermune, has filed a lawsuit to stop the release of clinical trials on their drugs, effectively shutting the whole program down.

AbbVie’s major product is an injectable biologic drug called Humira.  You may never have heard of this drug, but it’s on track to become the number one selling medicine in the world, with sales this year topping $10 billion.  It’s used to treat autoimmune diseases like rheumatoid arthritis, Crohn’s disease and psoriasis – conditions in which the body’s immune system starts attacking its own tissues, causing pain and inflammation.

Humira costs up to $25,000 per patient per year – and because it’s an immune suppressant drug, it can open the door to a ghastly range of side effects, from tuberculosis and serious fungal infections to rare but aggressive cancers.  For some patients with devastating symptoms, Humira may be their best option, but for many others it’s a gamble not worth taking.  That’s why it was approved only to treat moderate-to-severe symptoms that have not responded to older, safer treatments.

Now AbbVie is arguing that the results of trials of Humira – including the evidence of the serious side effects it can cause – are actually protected “trade secrets.”  (Just like Colonel Sanders’ recipe for the eleven herbs and spices that go into Kentucky Fried Chicken.)  And just as KFC owns its recipe and keeps it secret from the competition, AbbVie and InterMune claim to “own” the results of clinical trials on their drugs. Releasing them could help their competitors and harm their future profits.  So the trial results should be kept secret – even when they include evidence of serious harm or death.

“Trade secrets.”  That may be all very well for the secrets to making “finger lickin’ good” fried chicken or squeezably soft toilet paper.  When human lives and health are at stake, however, it’s nothing short of criminal.  Their right to profit should never trump our right to know the truth.

Most people who have been diagnosed with a mental illness know all too well what it’s like to be kept in the dark and denied the right to make informed choices about our own fate.  Usually this is justified as being “for our own good.”  We’re told we lack insight into our own problems, and that knowing the facts about our own medical treatment would just make us anxious.  We might make the wrong choices.  Our doctors know better — or so the story goes.

I used to think only “mental patients” could be treated this way.  But increasingly, everyone is at risk.  Even those who trust their doctors cannot feel safe, because AbbVie and its backers want to keep doctors in the dark as well.  Working with RxISK has put me in touch with people living with chronic diseases like Crohn’s and Parkinson’s whose experiences with Healthcare Inc. sound more and more like my own.  They may have “real” illnesses with clear physical symptoms, but they feel as deceived and disrespected as any “mental patient.”

The more we work together, the more we understand each other.  This fight for the right to know is both an urgent priority right now, and a real opportunity to get our message out and forge alliances beyond our own community.  So I hope you’ll all sign the petition and pass it along … including to friends and relations who have never heard of Zoloft, Klonopin or Seroquel.

11 COMMENTS

  1. “the results of trials of Humira … are actually protected “trade secrets.””

    Perversion and obstruction of Justice!

    Trials involving humans, right? If so, what does that make the people who’ve used the drug?

    At least some of the results of the trials would be *in those people’s bodies* and so not all information is limited to a secure, forbidden database (and thereby, can be figured out. The hard way). Counteraction: maybe start a website where people can register as having used Humira (and whatever other drugs). With support from scientists, doctors and other professionals, they can collaborate to highlight questions of the missing (“protected”) vital information they certainly are entitled to know. Call it database by-pass surgery / Operation Scooby. Or, just sign the petition (will do).

    ~ mjk

  2. Thanks for an illuminating article, Johanna. I quite agree with your points on patient right to know. I would perhaps go further, by lobbying for changes in US public law. We need to require pharmaceutical companies to submit not only their cherry-picked positive results, but indeed ALL of the data generated in trials, before a drug can be approved for use by the US Food and Drug Administration. Negative outcomes should be reported both to the FDA and the public.

    Keep up the good work.

    Regards and best,
    Richard A. Lawhern, Ph.D.
    Resident Research Analyst
    Living With TN — http://www.livingwithtn.org