Life as an Extreme Sport

OutbreakChat: A Livetweet of a Movie That Gives People Nightmares,…

November 12, 2014 Kelly ...and everything else, Bioethics, Pop Culture

…and probably not for the reason you think. Outbreak is one of those movies people seem to either love or hate (or possibly love to hate); almost everyone I know who has anything to do with public health, infectious diseases, or virology tends to swear up a blue storm when the movie comes up.

So naturally, a group of us are going to watch it in real-time tonight, drinking and live-tweeting our thoughts on Twitter. This will include fact-checks, snark, and almost certainly questions and answers from the crowd-at-large. Who is doing this? Well, you might remember David Shiffman (@whysharksmatter) from my Virtually Speaking Science interview a few months ago; while he might seem like an odd choice to organize this, remember he has significant experience with pop culture/movie portrayals of sharks, mermaids, and other scientifically incorrect portrayals of the ocean.

Tara Haelle (@tarahaelle) is a freelance journalist probably best known for her excellent article that debunks flu myths. She’s written extensively on science and the need for accuracy in media imagery and discussion.

Nicholas Evans (@neva9257) is a post-doctoral bioethicist at the University of Pennsylvania’s Department of Medical Ethics and Health Policy, based in the Perelman School of Medicine. He specializes in biosecurity, bioterrorism, and the ethics of pandemic preparedness, and recently wrote a piece for Slate explaining why Ebola is not a bioweapon, despite media myths. (He’s also my husband.)

And what am I (@rocza) doing involved in this? Well, aside from spending much of the last couple of months educating Twitter about Ebola, blogging extensively about Ebola, and doing Justice Putnam’s “The Morning After” radio show to talk about the ethics of science journalism and Ebola coverage, I once upon a time was pursuing a PhD in bioethics and philosophy, looking at how popular media portrayals of medical issues affects our medical-decision-making (a continuation of my undergraduate thesis on autonomy and medical ethics). I’ve taught courses through pop culture (Stargate and Applied Ethics), and one of my most popular and invited lectures was on why we watch reality TV. I also have a weird affinity for Ebola; I once intended to become a virus hunter, and I’ve been studying Ebola, outbreaks, and the research for going on 20 years.

We are, of course, hoping more people will join in the viewing party-both experts and lay people alike. So pop up some popcorn, grab your favourite beverage of choice, and join us at 8pm ET tonight (#OutbreakChat) to see firsthand what set the foundations for the Ebolanoia that has raced through the world these past few months.

Edited to add: Bingo cards are available on Twitter.

Help Stop Ebola with this One Simple Trick!*

August 27, 2014 Kelly ...and everything else, Bioethics

I mean, other than donating to aid organizations that desperately need help, that is.

See, yesterday, it was revealed there was yet another Western person being treated with ZMapp. Yep, that experimental drug that the world supposedly ran out of last week. Except, apparently, when there’s a Briton involved, in which case, someone checked behind the couch cushions, NIH thought to look in an unused cold storage closet, or who knows—because that’s the problem. The world now knows British man Will Pooley received at least one dose of ZMapp and will receive more, and no one has explained how the Royal Free Hospital happened to stumble across these doses that theoretically didn’t exist. In fact, all they’re saying is

[T]he team treating the nurse had sourced the drug through its clinical networks with the help of international colleagues.

Well, that’s not at all suspicious. Clinical contacts? International experts? Sure, that doesn’t sound at all sketchy.

See, the thing is, we’re going back to risk communication, international relations, and the people who are dying en masse in affected countries who’ve been told that there is just no drug left. When you say “nope, sorry, no drugs left, we are all and completely out of ZMapp” and then manage to suddenly find some when a white British guy needs it, you foster a climate of mistrust—something that’s already a huge issue that doesn’t really need further fuel on the fire.

Which is why, at this point, when these random unaccounted for surprise stores of ZMapp are discovered, there needs to be transparency about where it came from, why we didn’t know about it, and why it was suddenly found. Because otherwise, it sure looks like the double standard of treatment for Westerners vs. native Western Africans is continuing to happen.

(*How does this help to actually stop Ebola? Right now, one of the bigger issues being seen in countries like Liberia and Sierra Leone is a complete lack of trust in Westerner health care workers who are trying to help. Reinforcing the idea that there is a cure for Westerners when people in Liberia, Sierra Leone, and Guinea have been repeatedly told there isn’t a cure for them is going to continue to emphasize this lack of reason to trust, and that trust is an extremely crucial step to all of the very basic things that need to be done to stop this outbreak from spreading any further. At this point, I’m leaning pretty hard on it being unethical for doctors or journalists to report on ZMapp use without also identifying the source of the drug.)

If I’m Gonna Drop Anything, It’ll be Bricks, Not Names

August 22, 2014 Kelly Bioethics

I really hate having to justify myself. I hate having to roll out “credentials” and be constantly challenged on whether or not I have the “right” to discuss philosophy or ethics, or why I am actually offering a bit more than an “opinion,” or the recent favourite, that I’m not just talking about these things because my husband is a postdoc at Penn.

I hate it even more when I see how people treat Nick — even before his affiliations were made public, no one asked him to justify his credentials. No one asked if he had the right to offer opinions, and in fact, few took what he said as opinions. Oh sure, he gets the MY SCIENCE FACTS crowd, but that’s the crowd that’s arguing the validity of ethics as a field, not the validity of Nick discussing ethics.

sexistandabsurd No one has suggested that he writes about ethics, or thinks he’s able to do so, because of who he is married to.

Some people have suggested that it’s because I don’t specifically call myself an ethicist or bioethicist in my Twitter profile, which is true. I have some issues there, and in particular I don’t want people to make the mistake of assuming I have a PhD, because I don’t.Look at my CV. Look at Google. Piece it together.

But that doesn’t mean I don’t have an education, because I do. I started off studying human psychology and comparative religions, and got about halfway through a dual degree when I had to relocate to another state, putting my education on hold. When I went back to school, it was with an eye towards either communication or epidemiology; I ended up in a strange interdisciplinary department at the University of Washington, the Comparative History of Ideas. My mentor had a degree in the History and Philosophy of Science, and I studied that, with a heavy emphasis in continental philosophy and anthropology, as well as medical history and ethics, in what was, at the time, the Department of Medical History and Ethics. They only offered a minor for undergraduates, but because of my major and my interest, I was allowed to take as many courses as I could, which ended up being equivalent the Master’s students.

During that time, I also started writing about pop culture and ethics for “the school newspaper” – which happened to be the third largest paper in Seattle at the time. I started guest blogging and then actually writing for other bioethics-related blogs, and I started giving invited talks on subjects I’d written on.

My thesis, which neared the length of a dissertation, was required for graduating with honors (which I did, both department and university). Relying heavily on continental philosophers you’ve never heard of, I made an argument against the primacy of autonomy and proposed an affect-centered ethic to take its place.

I went to graduate school, where I ended up writing for yet another bioethics blog. I worked in a bioethics research institute as a research assistant. I learned how to edit academic papers while working at an academic journal, where I also learned how to run an academic journal. I learned how to talk to the media, how to give interviews, how to evaluate timely and relevant topics. I learned how to write about complicated and serious issues in an accessible manner.

I also taught; I started teaching as an undergraduate, and into my graduate years. I taught basic general topics, I taught applied ethics, I taught bioethics. I taught Merleau-Ponty to freshmen and I taught medical ethics to graduate students.

Is that enough hitting over the head, or do I need to start name-dropping? After all, I learned a lot, from a lot of people, many of whom were, or are, considered the best in what they work in.

No, through circumstances, most out of my control, I don’t have a PhD to hit you over the head with when you question my credentials or my ability to talk about ethics in 140 characters. And that’s why, if you want to talk to “an ethicist” for a paper or publication, I’m happy to give you suggestions on who I think is accessible and able to talk on the subject at hand; I do understand the power of a PhD and the ability to cite an institutional affiliation. Do I wish I had that? Of course. But I also understand reality.

It's not just academia where you find this "treat a couple in the same field differently" bias; Emma Stone has spoken quite pointedly on it. — It’s not just academia where you find this “treat a couple in the same field differently” bias; Emma Stone has spoken quite pointedly on it.

Just like I understand the reality of why you question me and my ability to talk about ethics when it doesn’t even cross your mind to do the same with Nick. And it has nothing to do with his PhD, or my lack of.

Unfortunately, the fact that I even had to write that tells me that too many people don’t understand this, or the dynamics we’re working in, at all. Too many people don’t see that they will automatically accept a man as an authority, while automatically suspect that a woman can have any knowledge at all. So a situation is created where women have to be on constant defense, constantly justifying their ability to have more than an opinion.And yes, my irritation and my experience is a small fraction of what minorities, both male and female, have to deal with in academic and professional fields.

There is a difference between “let’s discuss” and “prove it,” one that rests not on tone or language, but on the implicit assumption that discussions happen between people with differing understandings, ideas, and knowledge, whereas someone being told to “prove it” has to meet some unknown, hidden bar of justification just to move on in to the possibility of discussion, and that the person making the demand has the qualifications to make such a determination.

And while there are situations in which “prove it” is appropriate, they are not “when the topic is about ethics and your background, degree, career are nowhere near ethics,” because you don’t have the ability to accurately judge my knowledge of my field.

You know who does?

The people I’ve never once been challenged by,Which is not to say there have never been loud and feisty disagreements. But see the difference between “let’s discuss” and “prove it.” I have never once felt as though I’ve had to prove my right or otherwise justify my ability to discuss ethics with other people in philosophy, ethics, and bioethics—and we’re not talking a giant happy-go-lucky field here, but one where civility is often strained, at best. in my last decade and change of being publicly involved in philosophical, biomedical ethical issues: other ethicists.

Aid Organizations Working in Ebola Regions

August 17, 2014 Kelly ...and everything else, Politics

Last night, Ian Mackay posted this very disturbing logistics/supply chain chart, showing that some personal protective equipment stock in countries battling Ebola are at “zero” – and have been for a while. Articles from the and New York Times bleakly illustrate just how bad the situation has become.

Donation box. Note: Cats are not needed at this time.

Because, contrary to popular opinion, humans don’t always suck, people seeing these posts immediately started asking what they can do to help and began brainstorming ways to crowd-fund supplies. However, as Twitter user Macrophagic so succinctly put it, the best thing to do right now is use established supply lines.For more information on why this is the case, read Harvard professor Calestous Juma’s excellent Al Jazeera op-ed on how the lack of infrastructure in the affected region and how this affects all public health.

In support of both people’s inclination to give, and to have that giving filter through established supply lines, here is a list of trustworthy organizationsTrustworthy as defined by me, based on research, name recognition, and Charity Navigator if possible. Vague, I know, but I wanted to get an international-as-possible list up as quickly as I could. that, as of Sunday, August 17, are still operating in Sierra Leone, Guinea, and Liberia. I’ll update this list as I come across more information, or as people enter/leave the affected region(s). Feel free to add your suggestions in comments.

Please check to see if your workplace does matching donations for charity.

The CDC Foundation
The CDC Foundation is an independent, nonprofit organization that connects individuals and the private sector with CDC’s expertise and distribution channels. The Fund’s Global Disaster Relief Response Fund is only activated during extreme emergencies, and has been activated for the Ebola crisis. They are providing personal protective equipment, communications equipment, emergency operations equipment, and funds for public health campaigns. The CDC Foundation received a rating of 96.07 from Charity Navigator. Donations are accepted worldwide.

The International Federation of Red Cross and Red Crescent Societies
IFRC is the world’s largest humanitarian network. Their donation page currently has a Syria crisis appeal, but if you select “donate,” the second option is for their Ebola campaign. You can also make a donation to your specific Red Cross or Red Cresent; here is the link to the American Red Cross website; that donation is tax-deductible. (I would recommend donating directly to the IFRC website, as that is guaranteed for Ebola efforts.) The American Red Cross receives an 85.25 rating from Charity Navigator.

Updated 21 August: Here’s the link to the Australian Red Cross donation page. They’re helping with awareness, contact tracing, medical treatment, and burial.

Direct Relief
Direct Relief is coordinating with doctors on the ground in Sierra Leone and Liberia to provide personal protective equipment and other supplies, which are being sourced directly from manufacturers. You can direct your donation to their Ebola efforts; they accept international donations. Charity Navigator gives Direct Funds a pretty amazing 99.71 rating.

AmeriCares
AmeriCares is organizing air shipments to hospitals in Liberia that have no necessary personal protective equipment, including gloves, gowns, and masks. They are accepting contributions for future shipments. AmeriCares receives a rating of 92.89 from Charity Navigator. Donations are tax-deductible.

Medecins Sans Frontieres/Doctors Without Borders
MSF has been pushed to its limits in the outbreak region, and vocal about it. What they need right now, however, is not more supplies, but more people. Their current fundraising campaign for Ebola is listed as fulfilled, and they are requesting that donations be made to their general fund for a more flexible response. MSF anticipates being in the West African region for at least six more months, so it’s entirely likely that they will re-open fundraising for that region. That said, given the extended timeline, it’s plausible general funds will be used. However, they are working in multiple regions of the world, so there is no guarantee that donations to the general fund will be used in West Africa. MSF/Doctors Without Borders receives a 92.03 rating from Charity Navigator. Donations are tax-deductible.

Added 21 August
World Food Programme
With quarantine (quite literally cordon sanitaires) enacted in many of the Ebola-affected regions, food supplies are becoming critical. The World Food Programme is ramping up efforts to feed people caught in the Ebola quarantines. You can read more about that here, and donate at this link. World Food Programme is 100% funded by donations, and the US arm of the organization receives an 89.11 from Charity Navigator. US residents who would like their donation to be tax deductible can donate here.

Added 25 August
UC San Francisco: Support the Emergency Ebola Response
UCSF clinician Dan Kelly has returned to Sierra Leone to operate a nationwide distribution network for emergency medications and supplies from their international partners; support the Ebola isolation and referral center at Kono’s Public Hospital; implement strict screening and control measures at the UCSF facility in Sierra Leone; coordinate emergency referrals to Ebola treatment centers in Kailahun District; collaborate with the District Health Management Team to implement effective contact tracing and sensitive community engagement. There is a matching gift opportunity here; every gift of $250 or more will be matched up to $50,000 total, through 30 September, thanks to the generosity of an Anonymous Donor. International donations are accepted, and US donations are tax-deductible.

Added 2 Sept
UNICEF
UNICEF is working in Nigeria to help quell their Ebola outbreak. Those in the United States can make a tax deductible donation at this link. If you’re an international donor, go here to find your country. The United States Fund for UNICEF is rated 93.69 by Charity Navigator.

Elizabeth R Griffin Research Foundation
The Griffin Foundation is working in Nigeria; you can find donation information here. I don’t know much about the group, but the foundation was formed in memory of a woman who died after contracting macaque-born B virus. The foundation works worldwide to promote safe and responsible practices for handling biological materials. So, you know, seems like they’re pretty useful right now. This foundation has not been rated by Charity Navigator.

Hospitals for Humanity
Hospitals for Humanity provide quality and affordable health care in disaster areas and people in the developing world. In addition to providing care, they also provide medical training and education to the local population. You can help by either volunteering for a medical mission or donating. Hospitals for Humanity has applied for 501(c)(3) status, but not received it yet. They are not rated by Charity Navigator.

Added 8 September
Global Giving Ebola Epidemic Relief Fund

Ebola continues to spread across West Africa, with the number of those affected continuing to rise dramatically. The latest report from the World Health Organization counts 3,069 cases of Ebola in the region and 1,552 deaths from the disease so far.

Global Giving’s Ebola Epidemic Relief Fund focuses on getting grant money on the ground fast, so that rapid responses to changing situations can be made. They are in the middle of a 400,000 fundraising appeal. Here is a full list of grants to date:
-Â BRAC (Sierra Leone) — $10,000
– DEVELOP AFRICA (Sierra Leone) – $26,000
-Â DOCTORS WITHOUT BORDERS (Sierra Leone) — $5,000
-Â FOUNDATION FOR RESTORING WOMEN’S HEALTHCARE TO LIBERIA (Liberia) – $18,000
-Â GBOWEE PEACE FOUNDATION (Liberia) — $5,000
-Â GREATEST GOAL MINISTRIES (Sierra Leone) – $20,000
-Â IMANI HOUSE (Liberia) – $30,000
-Â INTERNATIONAL MEDICAL CORPS (Sierra Leone) – $10,000
-Â INTERNEWS (Guinea) — $10,000
-Â LIFELINE ENERGY (Liberia) — $5,000
-Â WEST POINT WOMEN FOR HEALTH AND DEVELOPMENT (Liberia) — $10,000

Global Giving is a charity fundraising web site that receives an impressive 97.94 rating from Charity Navigator. An anonymous donor is matching all new recurring monthly donations to the Ebola Epidemic Relief Fund. Donations are tax deductible for Americans.

No, American Doctors, You Don’t Need Tyvek In Case of Ebola

August 16, 2014 Kelly ...and everything else, Bioethics

One of the more interesting aspects of the constant media coverage of the latest Ebola outbreak has been watching how developed nations like the United States, Britain, and Canada assume that the entire world is Just Like Them. The Seattle Times had a charming example of this yesterday, with American doctors questioning the CDC guidelines for how to care for an Ebola patient in America. An example of the ignorance on display comes from Tulsa, Oklahoma emergency physician Justin Fairless, who says that health care workers in West African nations

are wearing the highest level of protection, but the CDC recommendation lets us go down to the lowest level of protection.

Now, the CDC has repeatedly said that caring for patients in African nations is quite different than caring for patients in America, Canada, other developed nations, but apparently Dr. Fairless and others need a pictorial show-and-tell to understand that not everyone lives and works in a state-of-the-art world.

But first, a bit of description to set the stage for the pictures you are about to see. (Note: There are no sick or dead bodies in the following photographs.) This is from a Pulitzer Center on Crisis Reporting report on maternal/fetal care in Guinea, published in February of 2014, before the international community was aware of the Ebola outbreak:

“The biggest problems at Donka are no electricity, no water, no equipment, no sanitation and very high rates of infection,” said Bintu Cisse, adjunct midwife supervisor, who has worked at Donka National Hospital for 20 years … External support provides some operational assistance, but Donka lacks basic facilities due to the inefficiency of Guinea’s under-performing infrastructure … Inside the maternity ward operating room, Cisse pointed out that the equipment did not work and doctors used suspended basins of water and a mixture of chlorine to sanitize. The main light sources were open windows””outside garbage was burning.

Cisse is describing the largest medical center in Guniea, Donka Hospital, which is also the university teaching hospital for the country.

This is what their isolation unit looks like:

Donka Hospital Isolation Tents. Cellou Binani/AFP/Getty Images.

Those are tents. Here’s what those tents look like on the inside:

When patients are inside, they are lined up on cots, one after another. There is nothing separating the patients from anyone, or anything. There is no airflow system—isolation wards in regions where Ebola is active tend to work by setting up large barriers to prevent people from getting close enough to worry about contagion; this could be large plastic sheeting, it could be fences that indicate the line at which people should not pass.

This is what an isolation unit looks like at your average, developed world, fully-equipped hospital:

Isolation room at Wellington Hospital, New Zealand.

So, as you can see, Dr. Fairless, and others, things are just a little bit different in countries where the GDP is more than USD 6 billion a year.

A MSF worker suits up to care for Ebola patients.

The major difference in treatment, aside from already-discussed issues, is who is in isolation. More specifically, in places like Guinea, Liberia, and Sierra Leone, while patients are isolated from other people in order to curtail infection, the health care workers are the ones “in isolation”—they’re the ones who are kitted up in bunny suits, in full Tyvek, layers of gloves, and the whole nine yards. Because: see above. The effort here is to keep the HCW in a protective environment to limit transmission to the worker, because it’s impossible to keep the patients inside a protective environment, due to the economy, the lack of infrastructure, the lack of ability because there’s no technology, there’s no power.

Isolation units in America and other developed countries, on the other hand, function to keep the patient inside isolation; patients are isolated from others to curtail infection, and that includes being “in isolation”: that is, the protective bubble that bunny suits and Tyvek create for HCWs in Guinea, etc, is extended around the patient in the form of negative air pressure rooms and glass walls.

In that sort of environment, the basics of gloves, gown, and mask are more than sufficient to care for a patient with Ebola—or any other highly infective agent. Which is why that’s what the CDC recommendations are; because technology and care levels are different, and the basic approach to isolating and isolation can change.

It’s also worth remembering that bunny suits and Tyvek weren’t always around when people were fighting Ebola. Here’s what Peter Piot was wearing in 1976, when Ebola was first recognized:

Peter Piot wearing protective gear in Yambuku, 1976.

That’s how the outbreak was stopped in 1976. In conditions that in many ways were worse than in the pictures shown above.

The doctors and other health care workers in that Seattle Times piece should be ashamed of themselves, demanding bunny suits and Tyvek and full protective gear when not only is it unnecessary, it’s a waste of money. But more than that, and even more than the myopic view of the world that appears to assume everywhere is just like their tidy and neat and well-staffed and well-maintained medical center, it illustrates the continued “me me me” reaction people in the developed world have around Ebola.

…after all, you don’t hear anyone suggesting that full isolation suites be sent to Guinea, or Sierra Leone, or Liberia, so that those countries can revert to the simpler CDC recommendations, do you?

Tag: science communication

OutbreakChat: A Livetweet of a Movie That Gives People Nightmares,…

Help Stop Ebola with this One Simple Trick!*

If I’m Gonna Drop Anything, It’ll be Bricks, Not Names

Aid Organizations Working in Ebola Regions

No, American Doctors, You Don’t Need Tyvek In Case of Ebola

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