This post has been handed to me in a neatly wrapped package, including an impeccably tied ribbon.
I've been what they call "radio silent" but that doesn't mean I've lost touch with the outside world. It simply means there may be a mess of unanswered email messages, to do lists galore buried under what I'm certain is fairly important snail mail, which is likely buried underneath some gadget or device.
The topics that have been intertwined in the package are from one story, a tragic event that happened ten years ago. Some of what speaks to me in this horrifying story has been touched upon, or pounded at, at one time or another throughout this blog.
I've written tons of things about the importance of research. Indeed, May is National Cancer Research Month. Research saves lives. Not just cancer research but research across all diseases. We work to save lives, to improve the quality of lives, to minimize side effects which may have an effect on medication compliance. Research leads to best medical practices using evidence based findings. Yes, I'm a huge fan of research.
Research requires people participation. Filling research studies is not an easy task for a number of reasons. I could spend the entire post enumerating the reasons for the difficulties often encountered when attempting to fill a study or a trial. I'm not on that soapbox right now.
Research involving humans requires the strictest adherence to the most stringent guidelines. At the very top of the list, the VERY TOP - informed consent. If this is starting to sound like a broken record, stay with me. I'm not ranting about the women in India (for now) or issues surrounding cervical cancer screening (coming soon based upon information recently released). At the very heart of this tragedy, is informed consent.
Dan Markingson was 26 years old. It was 2003. He was admitted to a Minnesota psychiatric hospital suffering from delusions and paranoia. He believed it was necessary to murder his mother. His involuntary admission to the hospital was based upon the evaluation of a doctor from the University of Minnesota. The doctor noted that Dan Markingson did not possess the capacity to make decisions regarding his medication.
Read that sentence again. A doctor noted that he did not possess the ability to make decisions regarding a psychiatric medication. This assessment was confirmed by a clinical psychologist. So riddle me this. HOW was Dan Markingson enrolled in a clinical trial by the very same doctor who determined he was unable to made decisions regarding medications. He was deemed capable of consenting to a clinical trial involving antipsychotic medications when a mere two days prior, his social worker was of the opinion that he was not capable of voluntary consent for treatment with an already in use antipsychotic.
In the background? Dan's mother. Protesting the enrollment in any clinical trial. The legal system entered the fray, too. Those are two separate issues that I'm choosing not to discuss at this point. Family involvement and what is referred to as HIPAA Handcuffs and Court Ordered Treatment. These are highly charged issues and until I can elucidate my opinion intelligently, I'm going to refrain from doing anything but mention that they were, indeed, issues. I want to do my homework. Listen to all sides. Hear the experiences of others. And then formulate my own opinion. I know how I'm leaning, but I need more information.
Informed consent? Absolutely not. In the months that followed, Dan's mother tried in vain to communicate with the team involved in the drug trial. Her son was deteriorating and not one of her calls was returned.
Dan committed suicide less than six months after being enrolled in the trial.
His story has been written about in a number of places in recent days which is how I came to learn about the whole thing. Scientific American does a terrific job of outlining the entire sequence of events. I'd highly recommend reading Judy Stone's article. The University of Minnesota is under scrutiny as discussed in this blog from a campus publication. The university response was published in the same blog, earlier today.
I haven't had a chance to read the response but having had intimate involvement with an involuntary psychiatric hold almost a year ago, I'm falling on the side of cover up and death in vain.
I'm not a conspiracy theorist, I'm not an armchair activist. I'm just a mom, trying to put myself into the shoes of another mom whose cries fell on deaf ears.
The time for reform is NOW. Start by encouraging your representatives to support HR3717. You will note a "Support These Bills" tab in the upper banner on the right side of this blog. The page is a work in progress. HR3717 is an immediate necessity. May, in additional to National Cancer Research Month is also Mental Health Awareness Month. This is an awareness campaign that we DO need. Lots of awareness and tons of education.
As for the shoddy clinical trial consent, that doesn't bode well for any of us regardless of which community on whose behalf we advocate.
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