Life as an Extreme Sport

End of Year Reflections – Or, Why You Can Blame Carl

In my religious tradition, the end of the year is a time for reflection and contemplation; what happened over the course of the year, how will it influence your upcoming year, what lessons did you learn, how will those be implemented, and so on. It’s generally a relatively quiet thing – and yes, should be done according to the lunar calendar, but I’ll be the first to admit that I’m going cultural on this one.

And so, it was with reflection at the end of the year – admittedly done in an earlier time zone, since I actually spent NYE in Brooklyn with friends – that I tweeted a simple but very heartfelt sentiment: You know, Twitter basically changed my life, several times over, this last year.

Almost all of the opportunities I’ve had this year, I can trace directly to being on Twitter. Now, of course, there’s the Seneca quote that says luck is when preparation meets opportunity, and some could argue that my preparation was key to jumping on opportunity, but the reality feels quite different for me. What I experienced was reaching out to a new world of people who were warm and welcoming and encouraging, and gave me just the smallest pushes I needed to start pursuing dreams I didn’t realize I still had.

One of the biggest examples of this would be a random discussion with science artist Michele Banks that ended up looping in Bora Zivkovic, the blog editor at Scientific American; one thing led to another and I found myself being strong-armed, in the nicest way possible, to submitting a proposal for a Science Online. Which led to my proposal being accepted, and introduced me to my co-presenter, Judy Stone, an internal medicine and infectious disease doctor with a speciality in clinical trials who also writes the utterly marvelous SciAm blog Molecules to Medicine, where she has most recently been tackling the Dan Markingson case.

Another example would be Paul Knoepfler. Paul is a researcher at UC Davis, and he also runs the amazingly informative blog IPSCell, which is a must-read for anyone interested in stem cell research. Paul covers it all, from explaining the latest journal news in accessible terms to covering the often contentious legal issues of the field. I didn’t realize just what a rock star Paul is in the field until I was at the World Stem Cell Summit in Florida, though. He really is that guy who is always surrounded by people who just want to say hello so that they can say they’ve said hello to him. I consider myself really lucky to have such an influential person telling me you know, I should keep writing, I say interesting things.

This in and of itself – being accepted by science-y types on Twitter, talking to really interesting and fun people without feeling self-conscious – would have made the year amazing. None of this, though – talking to any of the people already mentioned, or the numerous other interesting and intelligent and engaging science and ethics and research types that I do talk with on a near-daily basis – would have been possible if not for one person: Carl Elliott.
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Stop Yelling If You Want Me to Listen

Last week, I had the pleasure of attending the World Stem Cell Summit, and as is habit when I attend conferences, I tweeted my reactions to various panels I attended. Alexey Bersenev asked if I would elaborate on my rather frustrated tweeting from the panel on “The Role of States in Regulating Stem Cell Therapies,” and I agreed (although I didn’t specify the timeline of when that would happen, obviously).

This panel was a regulatory session, as were most of the panels that I sat in on. It was moderated by Kirstin Matthews, from Rice University, and the panelists were Keri Kimler of the Texas Heart Institute; Mitchell S. Fuerst, a lawyer who has represented Regenerative Sciences (Regenexx/Dr. Chris Centeno et al.) in their lawsuit with the FDA; and Leigh Turner, a bioethicist from the University of Minnesota.After needling some people about conflicts of interest earlier this year, I suppose it’s necessary to once again point out that I consider Leigh a friend and colleague, and unsurprisingly, agree with his views regarding stem cell treatments and regulations. I don’t really think that biases me against being yelled at, but hey – some people just want an excuse to nitpick.

Paul Knoepfler was also in the audience for this panel session; in his brief write-up, he called the discussion between Fuerst and Turner a “particularly interesting and vigorous debate.”

I am going to go a little bit further than that, and say that I think it was actually a really lousy panel and debate, largely because Fuerst opted to engage in what is often referred to as conversational terrorism. He relied on every “trick” in the book, including a full range of ad hominem attacks, attempts at misdirection, constant interruption and talking over both Turner and Kimler, dismissing valid criticisms with the repeated statement of “that’s not germane to this discussion,” and perhaps the one that got under my skin the most, utter loud bombast, as if shouting at the audience will simply intimidate them into agreeing with you.

In my case, it does quite the opposite. This is probably in part because I’m female, and a lot of men seem to feel that shouting loudly at a woman will intimidate her into silence, going away, or acceding to demands. Mostly it just makes me cranky and likely to yell right back — something I managed to avoid doing at the panel, largely because during the Q& A period much of the audience got up to ask Turner and Kimler questions that they were unable to address during the panel due to Fuerst’s behavior.

Turner was able to talk during the panel — at least at times — and address some of the interesting and contentious issues around the role of states in regulating stem cell therapies, and I was able to learn some more about the topic. But Kimler barely spoke, and this is too bad — she was there as a patient advocate, and given her background and experiences in Texas, with their medical board and their recent stem cell guidelines, I would have liked the opportunity to hear and understand more about the position(s) that she supports.

By engaging in bad behaviour, Fuerst undermined the position he supports regarding state and federal oversight of stem cell regulations and denied the audience not only the opportunity to learn about his position in a non-confrontational manner, but the opportunity to learn from the other two experts invited to speak.

And just to be clear, this is not behaviour unique to Fuerst. In fact, it was on display in September during the Texas Tribune Festival’s panel on whether or not the state’s stem cell policy was good for Texans.I suppose a genuinely cynical person could try to argue that it’s really Turner that’s inciting people to these levels of bombastic over-talking, but having spent time with him I can assure you that he is indeed the epitome of Canadian politeness. I find that if someone — in the World Stem Cell Summit case, Fuerst — cannot present their argument in a calm, coherent, and rational manner, I’m going to dismiss everything they say as not worth my time, if not outright invalid.This, for what it’s worth, is not something a panelist should try for, period, and it’s really something you want to avoid if your audience includes the media. I’m certainly not the first writer-type to find it irritating to be yelled at rather than engaged with. If ya can’t keep your temper under control and engage with your fellow panelists — and the audience — with the respect that they should be afforded (and that you want afforded to you), then don’t agree to sit on the panel in the first place. It just wastes everyone time, and that’s frustrating, for everyone involved.

Patients, Academics, and the Conflict of “Risk of Harm”

On a recent Thursday, I had one of those odd convergence moments where my work life converged with my academic life: I attended a webinar on Protecting Patients from Harm: Ethical, Legal & Policy Responses to Domestic and International Marketing of Clinically Unproven Stem Cell Interventions. As usual with these sorts of talks, the really interesting stuff comes up in the audience question-and-answer period.1 One of the questions that was asked and not really answered to my satisfaction was the question of harm. In particular, the question is what’s the harm in allowing someone who is ill – either terminally or at least permanently – to participate in these unregulated injections of stem cells?

There are a lot of good answers to this if you’re a clinician or researcher or ethicist. But the answer to risk of harm is an abstract concept that can be difficult to translate to the personal when you-as-person already feels harmed, be it from a chronic or terminal condition. Respect for the body, justice, consent – these have already been taken from you by the illness that you’re locked in a struggle with; chasing treatment, even (if not especially) an unregulated and unproven one, is in many ways an attempt to re-establish autonomy and control.

The more nebulous concepts of harm – the ones that are in some ways more systemically important to medical and research professionals – are abstract and lose meaning in the face of the personal, which is why ultimately, trying to even engage the idea of unregulated research on the grounds of risk of harm is ineffective: it’s impersonal. Of course, the impersonal is often desirable in academic discussions; when talking to peers, it’s a matter of kicking the tires of ideas, of talking about evidence and replicable information. Papers that are written, whether formally or in slightly more informal settings, are generally addressing people with similar specialized language and background.

This might have been fine even a decade ago, but the Internet is a great equalizer, and what was once the purview of those with institutional credentials and academic backgrounds is now available for anyone with interest. And, I can tell you from first-hand experience, when you or a loved one is terminally ill2 and facing a long, painful decline, you get interested real fast.

When Mom was dying of cancer, there was a “novel spa therapy” making the rounds of daytime talk shows; I’ve joked since about it being peach pit therapy, but that’s largely because of all the things I do have lodged in my brain from the 11 months from her diagnosis to death, I apparently didn’t have room to remember this particular “therapy.” What I do remember is that it was very popular, advertised as holistic and natural, and being offered at a spa facility in Mexico, with the explanation being that American regulators had banned it because it was a simple cure that would undercut pharma profits.

I also remember the desperate willingness of extended family and friends to want to believe in this or any other alterna-treatment option for my mother’s cancer. The first few months of illness had us bombarded with “helpful” information on all of these novel therapies, including the Mexican peach pity therapy, along with explanations of how evil the FDA is, how cruel doctors are, can you believe those people who would deny us life-saving medications for Mom. It was an interesting window in to what people will say, given that at the time my sister was working on getting in to medical school and I was in graduate school for bioethics. In other words, we were a tag-team of evil in the eyes of folks who wanted desperately to believe that peach pit therapy would cure Mom.

And it’s rough, it’s more than rough, because at 3am, when you’re running your hand over the soft stubble of silver hair growing back after the latest round of chemo, as you gently swab your mother’s lips and tongue with a wet sponge because she can no longer swallow, you want that peach pit therapy. You want any therapy. If someone had walked in to the room that was hissing with oxygen, machines beeping, pumping morphine in to her body, and promised me that if I just gave him $15,000, $30,000, the moon, he would give me a simple and easy and non-toxic cure that would keep her with me, with us, for a natural lifespan, of course I would have leapt at it. I would have robbed a bank; I would have climbed the sky; I would have done anything. Who wouldn’t? Who doesn’t want that easy fix, regardless of cost, because it’s your mother, your father, your child, you.

The Internet is the great equalizer of access to knowledge; it’s true. And when you-the-patient, you-the-caregiver, are reading scientific studies, it’s relatively easy3 to at least figure out what the abstract is saying: Avastin is promising for some lung cancers, but not so great for breast cancer. You can try to piece together risk, efficacy, application. You can — and many people do — talk to your physician about what you’ve read and what it means.

Unfortunately, most people don’t have a pet philosopher in their back pocket, or a bioethicist on call to explain what that obscure paper on harm principles means, or how it applies to unregulated stem cell treatment, or even the historical issues surrounding the concept of harm, experimental treatment and illness. So while the Internet certainly equalizes access to knowledge and closes the gap for the motivated patient or caregiver in relation to science articles, is actually creates a wider gap between this group of people and those in the humanities working with concepts of patient advocacy, harm, and protection.

The academics are talking to their peers, discussing ideas that have deep history, attempting to do meaningful work, trying to protect the vulnerable from being preyed upon by unethical and unscrupulous people, and perhaps most importantly, trying to prevent needless deaths. Is this paternalistic, or infantilizing the patient? I hesitate to go that far, because I would like to think that any moral person would, on seeing an oncoming car aimed towards another person, do their best to yank that other person out of the way — not out of paternalism, but simply out of reaction and instinct.

But that doesn’t mean that these papers and discussions aren’t difficult for the patient or caregiver, because it’s not the same as a scientific results paper. There isn’t an easy analysis of works or doesn’t, there aren’t results on charts and graphs, and there isn’t anything to discuss with your physician. Instead, it’s really easy to be left feeling like a nameless statistic rather than a person with an illness with a family and a story and a desire to live — vague references to philosophical theories or shorthanded comments that lead to a long string of clinical abuses by researchers, or just impenetrable talk about varying principles; all things that have little to no meaning without years of academia and context. The very things the Internet has not yet figured out how to equalize. So instead, you’re left feeling frustrated and back to helpless — that same state the illness has created — only this time it’s created by the people who seem to be doing everything possible in their power to remove your access to hope. How could you not be angry?

I honestly don’t have an answer to this gulf between those in academia who are doing their best to limit access to unregulated medical therapies, stem cells or otherwise, out of good intent,4 and the patients who feel like this has reduced them to nameless numbers without a voice. I do think that the onus to bridge that gap is on those in academia; to write a bit more accessibly, in less prestigious forums that are read by more patients and caregivers, and to leave behind some of that dispassionate academic voice in exchange for more emotive and compassionate language.