Trying to get it right: a blog carnival about Right to Try

Author: Stacey Johnson, 08/29/17

The crux of Right to Try legislation, enacted by 37 U.S. states so far, is the premise that terminally ill patients should have access to experimental therapies, even if they haven’t been approved by the Food and Drug Administration yet. It sounds straight-forward right? My body, my risk, my decision. The U.S. already has measures in place, in some states, to legalize medical aid in dying for terminally ill patients so why is this different?

The reality is much more complex.

Right to Try was first introduced in 2014 and Colorado was the first state to pass this law. Despite lots of attention for Right to Try, it’s a topic that hasn’t yet been covered by Signals. Right to Try doesn’t exist in Canada, but terminally ill patients here are advocating for it. And, as you likely know, the “Right to Die Act” – Bill C-14 – grants a terminally ill patient, whose death is reasonably foreseeable, access to a physician-assisted suicide.

It seems like the right time to broach this theme.

This blog carnival is not meant to sway readers in one direction or another, but simply present different points of view and encourage thoughtful discussion. (After all, research exists to show if you already hold a strong position, almost nothing will move you from it.)

One reason why blog carnivals are exciting, to me at least, is the diversity and originality of approaches that happen with one topic. It isn’t simply what positions people take on a controversial topic that appeals to me. It’s how unique each blog is as a result of the writer’s own experience. In the case of Right to Try, you would expect some bloggers would be for and some against. Perhaps not surprisingly, patient Brian Sladek, in his A prescription of hope, makes a strong case for why he wants access to experimental drugs that could save his life. Stem cell researcher Dr. Paul Knoepfler doesn’t support Right to Try and he’s also looking out for patients’ best interests. His post argues that Right to Try will benefit stem cell clinics more than it will patients. On the other hand, Patrick Bedford’s post explores the regulatory landscape in Canada with a view to determining a fair outcome for all parties. And there is variety in the rest of the posts featured below.

Between the regulatory situation in Canada and recent legislative changes in the cell therapy sector in Japan and the U.S. – I’m referring to the accelerated regulatory pathway for product approvals and the 8-month-old 21st Century Cures Act respectively – perhaps Right to Try isn’t needed? There are certainly many who argue this legislation is toothless and may harm patients.

As Globe and Mail writer Andre Picard stated when writing about this issue, “People who are terminally ill deserve compassion, but in our bid to be compassionate, we should not be offering up false hope, nor undermining the benefits to others. As much as we would like to, we cannot legislate magical cures, nor legislate away suffering.”

Where do you stand on this issue?

Read the links below to also hear from these bloggers:

David Kent: Valuing the good, the bad and the ugly

Barry O’Sullivan: What Would You Try, If Your Life Was at Stake?

Samantha Payne: “Right to Try” should require “Right to Know”

 

 

 

 

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Stacey Johnson

Stacey Johnson

For almost 20 years, Stacey has been providing strategic communications counsel to government, corporate, technology and health organizations. Prior to that, Stacey was at the CTV Television Network, first as a researcher, then as a story producer for “Goldhawk Fights Back,” a special ombudsman segment that aired weekly on the National News and Canada AM. Before joining CCRM as the Director, Communications and Marketing, Stacey was the Director of Communications for the Canadian Arthritis Network. Stacey is editor of Signals. You can follow Stacey on Twitter @msstaceyerin.
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