The Vulnerability of Hope

My Aunt called me a few weeks ago. She said she’d been watching 60 Minutes and had heard about an ‘amazing new drug’ that could ‘reverse stroke’.

I was immediately skeptical. I’m no medical expert by any measure but I have spent a lot of time reading, writing and thinking about stroke over the last two years. I may be no medical expert but I’m an informed laymen nonetheless. And, as far as I was aware, there was no drug that could “reverse stroke”. Nor was there any mechanism I could think of for a drug to act upon. What would such a drug even target?

Strokes disable by killing brain tissue. Until they find a way to regrow it, no treatment will reverse that damage. Neuroplasticity will allow other parts of the brain to step in and take over some functions of the damaged part of the brain. But the greater the damage, the less likelihood this will be sufficient.And neuroplasticity is encouraged through activity, not drugs.

So unless this was an experimental stem cell treatment, I couldn’t see how it could do what it was claiming to do. Nonetheless, the ‘buzz’ began to grow. Facebook pages sprung up dedicated to ‘bringing the FDA-approved reverse stroke drug to Australia’. Articles appeared in newspapers on people raising money to go to the US to receive the drug. Over on MyCause, where my own fundraising campaign was puttering along, other stroke victims were raising money for that trip as well.

Maybe there was something to it, after all?

I’ll skip to the ending here, in case I’m dealing with an unmotivated reader.

There isn’t.

There really isn’t.

Are you thinking of flying to the US to take this drug? Don’t.

Are you hoping it’s made available to treat stroke in Australia? Don’t.

I first came across the word Etanercept (Enbrel) long before my mother’s stroke when The Skeptic’s Guide to the Universe covered the long inglorious history of Edward Tobinick and his use of Enbrel to treat, among others, back problems, Alzheimer’s and now, strokes.

The thing is: Etanercept is an FDA-approved drug – just not for strokes (or for any of the other conditions Tobinick is known to ‘treat’ with it). It is an anti-inflammatory and since inflammation is a symptom, not a cause, of stroke or stroke damage there is no mechanism by which it could treat the condition.

Tobinick, a trained dermatologist, was placed on probation by the Medical Board of California in 2002 for promoting the use of Etanercept for back or neck pain when there was no scientific evidence to back it up. In response, Tobinick simply moved his clinic to a different state.

In 2013, Steven Novella – writing on Science-Based Medicine – challenged Tobinick’s use of the drug to treat Alzheimer’s and strokes. At the time, he noted that Tobinick’s practice had the hallmarks of the ‘dubious clinic’.

Basically, if somebody tells you they have a miracle treatment and the only way to get it is to go to their very expensive overseas clinic then alarm bells should be ringing immediately.

For that piece, Tobinick sued. And lost.

So imagine my disgust when I discovered that this ‘reverse stroke’ treatment is Etanercept – a rheumatoid arthritis drug with no evidence-base for the treatment of stroke. Now being aggressively marketed in Australia and potentially costing stroke victims and their families hundreds of thousands of dollars they don’t have for a treatment we have no evidence actually works.

I’ll repeat that because it’s important. Could Etanercept be used to treat strokes? Maybe. Can we say it is effective when there is little evidence that it does. Absolutely not. Until the drug is proven to be effective, then save your money for the care you and your family need.

I know – every member of my family, every friend of my mother’s knows – how hard it is to see what such a severe stroke has done to my Mum. Physically, mentally, intellectually, emotionally. In many ways, she is a different person.

So I know – we all know – how hard it is to stand by and not do something to help. I know how hard it is to feel helpless. I know how it feels to want to believe there is something, anything, that will help somebody you love get their life back.

People like this prey on that emotion. It is the worst kind of manipulation.

For the moment, there is no treatment for a stroke after the damage has been done other than physical therapy. And that will have gains only to a point. That is the reality of the world we live in. It fucking sucks. But there it is.

Anybody who tells you otherwise is selling something. And the only thing they’re selling is hope. Hope shouldn’t cost you everything else.