How PTSD took over America

The diagnosis is now being applied to everything from muggings to childbirth. An expert explains why it's bad news

By Alice Karekezi

(Credit: David Royal Hanson nando viciano via Shutterstock)

Topics:Health, Neuroscience, Mental Illness

In the past 30 years, post-traumatic stress disorder has gone from exotic rarity to omnipresent. Once chiefly applied to wartime veterans returning from combat, it is now a much more common diagnosis, still linked to traumatic events but now including those occurring outside the battle zone: the death of a loved one on a hospital bed, a car crash on the highway, an assault in the neighborhood park. Many would argue that this is a good thing: greater recognition of psychologically distressing events will lead to more people seeking treatment and a decrease in the preponderance of PTSD – a win-win.

Stephen Joseph disagrees. In his new book, “What Doesn’t Kill Us,” the professor of psychology, health and social care at the University of Nottingham (in the U.K.) warns that our culture’s acceptance of PTSD has become excessive and has led to an over-medicalization of experiences that should be considered part of ordinary, normal, human experience. This has kept us from proactively working through our grief and anxiety: We’ve become too quick to go to the shrink expecting him to fix us, rather than allowing ourselves the opportunity to grow and find new meaning in our lives as a result of painful, but common, events. Joseph advocates for a push toward post-traumatic growth as therapy to treat the stress of trauma, which he distinguishes as being different from the hokey, blue skies and rainbows, pop psychology that he claims has exploded in our culture in the past decade.

Joseph spoke to Salon over the phone to discuss our misunderstanding of the disorders, the meaning and usefulness of suffering, and if some cultures are more prone to PTSD than others.

How would you define a traumatic event? Is it subjective or are there some basic requirements that must be met?

I see trauma as a psychological rupturing. It’s when something happens to us that ruptures our psychological skin. Or, something which shatters our assumptions about ourselves in the world. That’s what I think of as traumatic, and in a way that can be many things. So, that can include a wider range of experience, and I can understand trauma in that broader way. There are lots of different experiences, such as being in a road traffic collision, or experiencing an illness – those sorts of things can be traumatic to people. It can be experienced as psychologically traumatic. But whether it’s necessary to create a psychiatric diagnostic category to capture those experiences is perhaps not necessary.

Do you believe that PTSD is over-diagnosed?

Well, that’s a really, really tricky question to answer because in a way it’s diagnosed pretty much exactly as it’s described in the Diagnostic and Statistical Manual (DSM). So whether the definition of PTSD is too broad is a different question, if you see what I mean. When PTSD was first introduced in 1980, it was defined much more tightly. The gatekeeper criterion to the diagnosis was: Have you experienced a traumatic event? In 1980, it was defined in such a way that only people who had experienced an event that was really outside the range of usual human experience, [like] Vietnam or the Holocaust, had experienced the sorts of experiences that were thought to elicit PTSD. So if you experienced something like a car accident or a traumatic birth, then you couldn’t get a diagnosis of PTSD, because, by definition, you hadn’t experienced a traumatic event.

In 1994, the definition changed in such a way as to include other, broader experiences. Equally persistent was the person’s subjective experiences of what they thought was traumatic. When that happened, people who had experienced car accidents, traumatic births, what we would have otherwise thought of as more ordinary life events, insofar as they are not statistically unusual, could then be diagnosed as a having PTSD. So now we are in a position where lots of people are able to receive the diagnosis of PTSD. So it’s not that it’s being over-diagnosed in that sense. The difficulty or problem, if there is one, is whether, generally speaking – PTSD would be part of this – the DSM over-medicalizes human experience. Things which are relatively common, relatively normal, are turned into psychiatric disorders.

Can you describe some of the typical symptoms of PTSD?

When people experience trauma, when their assumptions about themselves and the world come crashing down, there’s often a period of avoidance. People just try to block out what happened. Switch off. Turn their attention to other things. That’s quite understandable. Then, over time, that gives rise to memories and emotions that come flooding in as the person sort of begins to try to make sense of what happened, and that can become so powerful and distressing that they have to push that away again and go back into a period of avoidance. So sometimes people go through that, periods of avoidance and intrusion. That seems to me as a healthy and adaptive way of working through something painful, emotionally painful, that has happened to us. So those are the experiences. PTSD is when those experiences become so overwhelming that the person can’t function anymore – at work, or school, or in their social life. It takes over so much. But otherwise the symptoms of PTSD are fairly normal, natural ways of dealing with adaptation.

It’s important to see those experiences as quite normal and natural. They are not symptoms of a disorder by themselves. They’re just the way that people deal with an upsetting event in order to be able to make sense of things and to move on. It’s only when they become so overwhelmingly intense that they might be considered a disorder. I think that’s where we get into the problem with what PTSD is: when people are going through that normal experience, but they see it as having a disorder rather than a normal process of adaptation.

That will diminish over time?

Exactly.

Is the emotional pain overblown in such cases?

The suffering is very real. We’re not saying that people don’t have difficult emotional experiences and aren’t suffering. What we’re saying is this is not necessarily a disorder that people are experiencing, and if people think like that, it can be very disempowering to them.

What is the detrimental effect of over-medicalizing these more common human experiences of grief and pain?

When we think of ourselves as suffering from a disorder in a medical sense, well we go to the doctor and we expect the doctor to prescribe whatever the medical treatment is. We’re not in the driver’s seat. We go along – we tell them [our] symptoms, they listen to us, they diagnose what the problem is, and then they work out what the appropriate treatment is. That’s the mind-set when we’re working within a medical framework and we think of ourselves as suffering from a disorder. We sit down in front of the therapist and we expect the therapist to be like a doctor – to be looking out for what the symptoms are so that they can make the correct diagnosis and prescribe us the right treatment. The language of PTSD invokes those ideas, and I think it’s those ideas that can be quite unhelpful at times. For what we’re talking about here, if it’s a normal, natural process, what’s really important is for the person to be in the driver’s seat for themselves – to make their own choices, their own decisions, because we’re dealing not with a disorder, but a battle within the person to find new meanings and new ways of understanding the world. That’s what they have to do. Nobody else can do that for them.

What is “post-traumatic growth”?

Post-traumatic growth is when people come out of trauma having learned new things about themselves and about the world and about their relationship with the world. People develop new philosophies of life. They develop new priorities in life. People learn an awful lot about themselves: their strengths; what they’re good at; having new respect for themselves. They sort of see their lives as divided into two halves: before the event happened and after the event happened. There is a clear demarcation. And they recognize that something happened to them that sliced their world in half in that way, and things for them are now completely different. How they lead their lives has been transformed – their priorities about life, their relationships.

I think one of the things that captures that the most [starts with] the idea that, sometimes, people lead their lives in a way that is dictated by external forces of status and wealth, which are very much big drivers in our capitalist society. We often, in our everyday lives, forget about the small things that are quite important – our relationships: remembering to nurture them, to look after the people around us, to be giving, to be compassionate. When traumatic events happen, people are often shaken back to reality, and remember what really matters to them. Often it is those other things – remembering somebody’s birthday; nurturing our friendships; looking after our parents, the people around us; really embracing our relationships; and letting go of a more materialistic outlook. People often describe it as getting back to who they really are, or feeling more true to themselves, or being more genuine or more authentic. Somehow the idea of the false self that people create around them is shattered, like Humpty Dumpty falling off a wall. The essence of who they are emerges.

Yes, becoming truer to oneself captures the idea very well. Realizing that life is short and sometimes there isn’t as much time left as we thought to put up facades.

This kind of makes trauma sound like a blessing (you even mention people describing it as a “gift”). Is finding meaning the same thing as condoning the traumatic event? And doesn’t this talk of growth all sound very “kumbaya-ish” and unrealistic?

One of the reasons, sometimes, that post-traumatic growth can be seen unfavorably is that it seems like saying that trauma can lead to greater happiness; that for people who have been through trauma, it’s a good for them – they’re happier. That’s just so not the message. It’s not saying that trauma leads to happiness, in terms of smiling and feeling good and laughing and joy – not that type of happiness. What we’re talking about is how trauma can lead to a deeper, more existentially meaningful and fulfilling life, and that in turn may lead to greater happiness further down the road. But, post-traumatic growth is not about happiness in the sort of yellow, smiley face sense.

In essence, post-traumatic growth is a very simple idea, but it has been overshadowed by this mass of psychiatric literature over the past 30 or 40 years about the overwhelming destructive side of trauma, and about how these lead to medical problems. It’s a very simple idea, but [post-traumatic growth] sits, on the one hand, very uncomfortably within mainstream culture of the world of psychology and psychiatry, and on the other hand it seems to sit very comfortably with some other parts of Western culture, such as positive thinking, but it also clashes with some of that literature which is quite superficial, and not grounded in scientific research, and makes unsupported claims.

So, no, post-traumatic growth] doesn’t mean that [people] value or cherish the bad thing that has happened to them. They just accept that it has happened to them. People will often say they wish it hadn’t happened, or they wish they could go back, but there is a realism that they know they can’t. So it’s accepting that they can’t go back; they can’t change things. The only way forward is to go forward. It’s when people can’t accept that something has happened, and they [try] to go back to how they were before, is when they struggle. Acceptance is just being realistic – not seeing it as a good thing.

And someone not experiencing growth — or experiencing PTSD — is that person always trying to go back?

I think that often that’s what gets people stuck – trying to go back, trying to rebuild their lives exactly as it was before. That can lead people to get very stuck because it just isn’t possible when traumatic events happen and we’re presented with new information about the world, or with losses. It just isn’t possible to go back and make things as they were. We have to somehow accept what has happened to us and move on.

Is post-traumatic growth something completely in opposition to PTSD or post-traumatic stress? Either you have one or the other?

They can sit together. The way I see it, post-traumatic growth mostly arises out of post-traumatic stress. So it’s how people deal with the post-traumatic stress; how they manage to deal with the intrusive thoughts that are plaguing them; and the new sense they make of their experiences. So it’s through the post-traumatic stress, through the struggle of post-traumatic stress that post-traumatic growth arises. So often there’s a period of time in which people will begin to talk about post-traumatic growth but they will still be suffering from post-traumatic stress. They’re not in opposition. In a way, they are opposite sides of a coin.

You make a claim that true happiness is something that in and of itself cannot be pursued, and one is doomed to fail if one tries. How is that?

Well, that’s an idea that some philosophers have put forward. Some of the research seems to suggest that what’s really important to finding happiness is meaning and purpose in life. If we think our road to happiness is through seeking hedonistic pleasures night after night, then that’s not likely to lead to a deep, fulfilling level of happiness. But, if we find ways of finding meaning and purpose, wherever that might be, then we’re not setting out directly aiming for happiness but that’s what we’re going to get. We’re going to find a more fulfilling life. Happiness is a byproduct, but in a sense it’s more guaranteed.

When we think of psychological therapies, and the helping professions in general, they often have been about helping people feel better. [For] people with various problems of depression, anxiety or post-traumatic stress, therapy is about getting the person to have a more positive emotional state. That’s been, really, what the therapy world has been about for 50 years, and yet that’s only half the picture. The other half is about the meaning we put on things, our purpose in life, our sense of ourselves, our sense of autonomy, our relationships. Psychology can also be about those things. I’m not saying that therapists have ignored them altogether; for sure, they haven’t, but those more existential ideas have been overshadowed by trying to feel good. This is the idea between what psychologists call subjective well-being, which is about feeling good, and psychological well-being, which is what you could call “meaning-good,” and it’s just about getting the balance between those two things right.

Are there some cultures that are more prone to post-traumatic growth?

That’s a really good question. I don’t think the research has really documented that yet as to whether it may be more common. What the research has shown, however, is that post-traumatic growth is something observed in pretty much all cultures that have been investigated, though differently defined in slight ways. “Post-traumatic growth” sounds like a very Western idea, but [it’s one that] gets back into history and into all sorts of cultures. It’s an idea that’s very resonant with Buddhist and some Chinese philosophy ideas, as well as ideas in Western religion.

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Santorum’s policies would have killed my daughter

Without amniocentesis, her rare disease would have gone untreated and she would have likely died at birth

By Sarah Fister Gale

(Credit: AP/Eric Gay)

Topics:Rick Santorum, Life stories, Health

This article originally appeared on Sarah Fister Gale's Open Salon blog.

Next month, my daughter Ella will turn 11. She’s a beautiful girl, with blond hair and green eyes. She’s an amazing artist, a brilliant writer, and she can do the splits without even warming up.

And if I hadn’t had an amniocentesis, she would have died the day she was born.

Just over 11 years ago, I received a call from my obstetrician’s assistant to let me know that there was an anomaly in my recent blood test. “It’s probably just a testing error,” she assured me.

But when I returned the following week to have the blood test redone, the anomaly showed up again. There was a foreign antibody in my blood stream that shouldn’t have been there. I was six months pregnant, and up to that point my pregnancy had been completely normal.

Rather than turning to my local politician for prenatal advice, I followed the guidance of my obstetrician, who sent me to a perinatologist, who recommended I have an amniocentesis. Because he had a medical degree and years of experience treating pregnant women, I followed his recommendation.

That day, he stuck an alarmingly long needle directly into my growing belly to sample the amniotic fluid around my baby. The results weren’t good. She had Rh negative disease.

Rh negative disease occurs when a mother has a negative blood type and a baby has a positive blood type. My negative blood perceived Ella’s positive blood as a foreign body that it needed to destroy. And that’s what it was doing. Every day, little by little, my body was wiping out every one of her red blood cells.

Before the 1960s, Rh negative disease was responsible for the deaths of thousands of babies whose mothers, like me, had negative blood. They usually carried their babies to term and gave birth to them, only to have them die or suffer extreme brain damage as a result of the anemia and jaundice that occurs with this illness.

In 1968, a drug called RhoGAM was approved by the FDA to prevent this disease, and it has since saved hundreds of thousands of lives. In almost every case when it is administered in time it is effective. But in my case, it wasn’t.

Amniocentesis is the recommended test to diagnose this disease, and it enables doctors to define a course of action to treat and monitor these babies for the best possible medical outcome. Had I not had that amniocentesis I likely would not have discovered that she had this illness. I would have carried her to term, given birth to her, and watched her die in my arms.

Instead, thanks to the amniocentesis, my doctor tracked her progress relentlessly. Every week after that I had another (expensive) prenatal screening test, called a serial ultrasound, through which he was able to monitor the anemia that grew steadily worse as more of her blood cells were destroyed — and track the development of her lungs so that she could be delivered at the best possible moment for her safety. The day he saw that her lungs could function on their own, he delivered her.

Ella was born four weeks premature, a tiny 5-pound bag of bones, with bright yellow hair and eerily orange skin from the jaundice. Within hours of her birth she was given a full blood transfusion – they replaced every single drop of her damaged blood with new blood that would save her life. Then she spent the next five days in the NICU with cotton blinders taped over her eyes and five bilirubin lights shining on her to reduce the jaundice, while my husband and I took turns sitting at her side round the clock, watching her struggle to survive.

For months after she came home, she had to have weekly blood tests to make sure the anemia was in control. They had to draw the blood from her heel because her fingers were too tiny to prick. Finally, at three months her own defenses kicked in and she started producing her own red blood cells.

Happily, she made a full recovery and has no lingering effects from the disease. And it’s all thanks to that one medical test.

If Rick Santorum had his way, I wouldn’t have been able to get that test, and she most likely would have died. Because according to him, tests that give parents vital information about the health of their unborn children are morally wrong. Though he has no medical training, and no business commenting on the medical decisions that women and their doctors make, he argues that such tests shouldn’t be provided, or that employers at least should be allowed to opt out of paying for them on “moral grounds.”

Eleven years ago, my husband and I had two kids and a mortgage, and like most young families we didn’t have $2,000 to pay for a test that my husband’s employer might object to on moral grounds.

So, while Mr. Santorum may think that his blowhard opinions about when and where women should be allowed to have medical tests is righteous, I say it’s ignorance.

In the Catholic church where I was raised, pride, arrogance and an overinflated sense of oneself were considered sins. But in Rick Santorum’s world they are virtues, and they make up the foundation from which he proclaims how other people should live their lives.

When I read stories in the news about countries where women are prevented access to birth control, or the freedom to work, or the right to make choices about their bodies and their lives, I wonder how a leadership with such crazy ideals could ever gain power. But as I look at what’s happening in the debates leading up to this presidential election in our own country, it has become chillingly evident.

As a nation, we are at the precipice of a slippery slope where men in power are arguing about how to take basic rights away from women. I shudder to think what lies at the bottom of that slope, but if Rick Santorum has his way we will all soon find out.

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The coming medical revolution

Technology has the potential to transform our concept of sickness. An expert explains what the future holds

By Lucy McKeon

Interview with Author of the creative destruction of medicine about technology and medicine

Topics:Medicine, Health, Editor's Picks

The information at our everyday disposal is growing at a breathtaking rate. From the beginning of civilization to 2003, the world accumulated 1 billion gigabytes of data. Today, we create 1 trillion gigabytes every year. These advances have transformed the way we think about knowledge, communication and countless aspects of our everyday life — and they have the potential to revolutionize the way we think about our own health.

In his new book, “The Creative Destruction of Medicine: How the Digital Revolution Will Create Better Health Care,” Eric Topol, a former professor and researcher at the University of Michigan and Case Western University, and chief academic officer for Scripps Health, a nonprofit healthcare system based in San Diego, argues that the digital revolution can democratize our medical system. Topol demonstrates how the digital revolution can be used to change individual care and prevention, and even the economics of American healthcare. From cellphones that automatically collect medical data, to biosensors, advanced imaging, individualized prescriptions and gene-specific drugs, Topol’s book leads readers through science-fiction-sounding scenarios that may soon be a reality.

Salon spoke with Topol over the phone about the empowered consumer, rebooting the life science industry, and the doctors of the future.

“Digitizing the human” is a provocative phrase you use throughout the book; what does this mean, and how can it lead to what you call the “democratization of medicine”?

We’re so used to digitizing everything — books and movies and periodicals — everything except for our bodies. My idea is to digitize the essence of what makes us tick — our genome and our physiology — thanks to different biosensors which are largely wearable, put right on a band-aid or a wrist or on the sole of a shoe. This would be combined with imaging, the ability to image any part of the body with a high-resolution pocket ultrasound device. When you take all these things together, along with personalized electronic health records and health information systems, this gives us a really panoramic, deep view of each individual.

How do cellphones fit into this?

Well, the cellphone has been the basis of a lot of democratization. You look at the Arab Spring and the Occupy movement and it’s the mobile phones that are bringing people together, through Facebook and Twitter and sharing pictures and videos and emotions. Now the digital infrastructure supports the whole medical side of this; you could have your own data for blood pressure or glucose or mood or anything quantified, right on your phone. And then that information can be shared with your social network, or your doctor, or whoever.

So the ability to have this mini computer in your pocket, that you’re essentially surgically attached to, is such a powerful force for the use of that data.

What role will the consumers play in this revolutionary shift?

I envision the consumer being the primary driver. That’s why I actually wrote the book. I’ve written a lot of medical textbooks, and I’ve lived in the medical microcosm until recent years, but then I started realizing that this digital world is really changing everything. The medical community itself is so resistant to change. The government and the life science industry are not going to be active in promoting a radical change. But consumers can do it and they’re more truly empowered, more resourceful and bound together and powerful than ever before.

And there’s one other lesson that’s really valuable: Back in 1997, the United States approved Direct to Consumer Advertising on TV for drugs, which I think was a dreadful mistake, by the way. But what’s interesting about it was it basically fueled this “Ask your Doctor” movement: a patient-centered, consumer-centered model. It was very powerful because of course these drugs [being advertised] became extraordinarily widely used. I don’t want to promote that, but on the other hand, if consumers are partnering with doctors, like, “Here’s my genome, Doctor, what do you think of it? Here’s my blood pressure and vital signs for the last three months,” it’s not just “ask your doctor” anymore it’s tell your doctor, share with your doctor.

Why is the medical field so resistant to digitization/digital records? Other industries have done this almost a decade ago.

Well, this is the history of medicine. If you go back to 1816 when the stethoscope was invented, it took 20 years before doctors would use them. The average time it takes for a medical innovation to come into daily practice is 17 years, which is just horrible. And they had all kinds of excuses, similar to the excuses that they have today. Basically, one of the main reasons doctors wouldn’t use a stethoscope was because they said it would interfere with their interactions with patients. And they didn’t want to learn all these new heart sounds and breath sounds and that sort of thing.

There’s an unwillingness to change. For example, a lot of physicians I work with are bothered by the fact that they have to be typing at a computer, looking at a screen, rather than interacting with a patient. And I understand that; both the physician and the patient take a hit in terms of optimal communication. How do we deal with that? A lot of physicians now have scribes that do the computing of data while they never lose eye contact with the patient. The patient obviously knows very well whether they’re not being listened to or looked at. So part of it is resistance to change and part of it is losing touch with a visit with a patient.

You mention this in your book, but isn’t it dangerous to have our medical files out there, in terms of security issues?

Like everything else that’s digitized, when you digitize a human being you have the potential for hacking, privacy and security issues. And already there have been breaches of electronic medical records in major medical centers around the country. So this has to be attended to with the maximal assurance that we’ll do everything we can to preserve that security. It’s a tradeoff: Do the benefits of having the essence of each individual captured digitally override the hopefully small, negligible risk of a breach of that data?

How do American doctors compare to doctors in other countries in terms of their attitudes toward technology?

Medicine on a planetary basis, on a global basis, is very conservative and resistant to change. But there are some specific examples where there’s a real gradient or heterogeneity, a real marked difference in cultures. In the U.S. the adoption of technology can be stymied because of reimbursement issues. In other countries where there’s no fee-for-service private practice, there’s been remarkable adoption of certain technologies. A great example of that is the portable ultrasound; I haven’t used a stethoscope now in two years. I use this pocket ultrasound device so I can see everything in the heart rather than listen to the heart’s sound. In the U.S., hardly any doctors are using that because they can’t get reimbursed; they much prefer to send the patient to get a cardiogram, which is an ultrasound of the heart, or an ultrasound of the abdomen or whatever the ultrasound is. Whereas in India, Brazil, China, this is one of the hottest new technologies because it saves costs dramatically and there are no issues with respect to reimbursement.

In what ways can recent breakthroughs in our understanding of the genome – from the Human Genome Project of 2000 to today – contribute to the shift to individual-based medicine?

There are three biggies right now. The longest chapter in the whole book is on genomics. The first is pharmacogenomics. Now, in the U.S. alone, we spend $350 billion a year for prescription medicines, and so many of these drugs have known serious side effects, that can be predicted by knowing a particular genotype. And in addition, some medicines don’t work for a lot of people, and we could predict that with a very simple genotype — like Plavix, which a third of people don’t respond to but they keep taking every day, or Metformin for diabetes, which 25 percent of patients don’t respond to. Tegretol has a horrendous side-effect profile. We don’t screen for it in the U.S., but you can’t get a Tegretol prescription in Taiwan without having a genotype. So in that sense we’re way behind. I could go on, a lot more examples are in the book, but that’s No. 1 – the use of genomics today. We’re not leveraging that great new knowledge.

Second is in the field of cancer therapeutics. If you have a new diagnosis of a significant cancer today, the best way to potentially get the right therapy is to get a whole genome sequence of the tumor, and also of your native so-called germline DNA, and compare the two. By comparing the mutation in the tumor to what you’re born with in your DNA, you can see what went off the tracks (because cancer is by definition a genomic disease) and then you can fashion a therapy specifically for that individual.

The third area is the elimination of the idiopathic, which is a very fancy medical term used for “we don’t know.” There’s a lot of people walking around with debilitating serious disease, and trying to get a diagnosis for what is wrong with them and they haven’t been able to do it. The issue is, until now we didn’t have a way to sort this thing out but with whole genome sequencing, we can in many of these individuals determine the root cause, the biologic basis for their illness.

Competing manufacturers of these new technologies will be required to agree upon uniform standards; is this a feasible hope?

This is a really interesting trend to watch. Now in the networking electronic world we live in, you see some unprecedented collaboration among even competing life science industry companies. So, for example, in the case of Alzheimer’s disease, where they haven’t come up with anything to prevent or change the course of Alzheimer’s, it’s been very frustrating. Many companies have invested billions of dollars in this whole objective. But now, they are working together. So most of the large pharma companies are pooling their data to basically do an autopsy of the failed drugs to find out what went wrong. And you never would have seen that in the past – I mean that’s actually remarkable.

If everyone working on cancer that did a genome sequence of an affected individual put that data in a common place and all the companies were also involved, we could really get so far ahead in this cancer problem, which is quickly emerging as the No. 1 cause of death, overriding heart disease. But we don’t have that type of collaboration yet. We need it to cross national boundaries, and to get the academic and life science industries to converge. That would be creative destruction in high gear!

What technological innovations in medicine are you most excited about?

I think the one I’m most excited about is the embedded nano-sensor. You have to put it in the bloodstream and get it to localize, either in the finger or the wrist, someplace that’s hyper handy that will communicate with your cellphone. And that embedded nano-sensor can be used to pick up, for example, the first cancer cell that shows up in the bloodstream, which would promote the earliest possible detection of cancer.

It also could help with the autoimmune form of diabetes, called Type 1, which usually affects kids. If we have that embedded nano-sensor constantly monitoring, and a medicine used to block the immune system when needed, this, hopefully, could lead to the end of autoimmune diabetes, which is really exciting.

And the other really far out thing is the area of heart attack prevention, again through an embedded nano-sensor. It can be used to pick up cells in an artery that’s starting to crack a week or two before a heart attack. We have some really good data to suggest that this will ultimately be possible.

How does Obamacare fit into this? How much will this cost? Where will the money come from?

Obamacare is in a different orbit. There’s nothing in the 2,000-plus page bill that gets into this kind of hyper innovative individual medicine, biosensor leveraging, genome and all these sorts of things – it doesn’t really show up. But it is a great opportunity to make medicine and healthcare more affordable. For example, it’s estimated that about a third of the $350 billion spent a year on prescriptions is a total waste. So there’s a great opportunity there, with gene-specific drugs. If we do the 20 million echocardiograms, and almost as many abdominal and fetal ultrasounds, for free with ultrasound pocket devices, there are billions of dollar we could save there. With sensors, if we could get tens of millions of people in this country to manage or prevent their diabetes that could have enormous financial implications. And it’s the same for high blood pressure: 50 percent of people with high blood pressure do not have it adequately managed, so they’re vulnerable for strokes and heart attacks. If we can manage it with a simple cellphone sensor, that would be an enormous potential to lower costs for stroke disabilities, heart attack, heart failure, all those sorts of things.

In what ways can social networking be useful for physicians?

Patients share on online health communities and each of these social networks have amassed an enormous following. Let’s say you have a particular condition like multiple sclerosis, or a form of cancer or diabetes. You go on these social networks and find peers whom you’ve never met with, but they become your guidance and connections. And they are now more trusted than doctors by a substantial proportion of participants in these online health communities. Now, on the doctor side, almost 90 percent don’t even know these online communities exist, which is in itself surprising. But, if we work together, this is another opportunity to get information out there.

On the other hand, you don’t exactly want to have your patient as your Facebook friend. But one thing that’s striking me is, just a couple weeks ago in the Wall Street Journal there was this big debate: Should doctors email with their patients? And I thought, “How could that even be a question?” It seemed like a crazy throwback to a different era. Then there was an article in the Journal of American Medical Association asking, should patients be able to access their laboratory data? You’ve gotta be kidding. How could this be a question in 2012? This is the paternalistic, Doctor Knows Best mind-set that is still carrying over to today. We’re too far away from democratization, and I’m hoping we can change that.

What does all this mean for the individual consumer? How will our actual experience of going to the doctor of the future change?

The doctor of the future, who has plasticity and has moved into the digital era, will be up on all these things. There may not be in-office visits, there may be virtual visits on Skype or Facetime, and patients could send all their data real time through their phone. I think each physician has to say [to patients], We want you to have all your data. We want you to be participatory. We need you to be fully engaged. And if you’re fully engaged, you’re the one with the most vested interest in your condition. We want you to have all the data, whether it’s your lab test, your notes, your metrics on your phone, your genomic data, your scans, whatever it is, we want you to have it because we want you to help drive this process.

: Lucy McKeon is an editorial fellow at Salon. More Lucy McKeon

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Illuminating the history of medicine

A lush new chronicle of health-related art tracks centuries of scientific gains

SLIDE SHOW

By Emma Mustich

Spike Walker, "Quinidine Crystals," 2006. Polarised light micrograph. (Credit: Spike Walker, Wellcome Images, London)

View the slide show

Topics:Art, Medicine, Health, Books

Sir Henry Solomon Wellcome died in 1936, but his curiosity about human understandings of “the preservation of health and life” — carried forward in the 21st century by the Wellcome Trust — is supremely infectious.

Open “The Art of Medicine: Over 2,000 Years of Images and Imagination” (University of Chicago Press, out now), which spotlights works from London’s Wellcome Collection, and you’ll find illuminations from late medieval medical manuals; 18th-century anatomical waxworks with removable organs; leaves from hand-colored plant and herb guides; early-20th-century lithographs advertising gout remedies; astonishing close-ups of implanting human embryos; and much, much more. The collection is so wide-ranging and diverse as to defy a pithy explanation — but taken as a whole, it’s transfixing.

Emma Shackleton, one of the book’s co-authors, answered a few of my questions over email; the accompanying slide show offers a whirlwind tour of the past few hundred years of medical imagery.

Roughly how many of the images featured in the book do you think were originally conceived by their creators as “art”? How much of the material was intended simply to be instructional?

For the historic works, we often do not know what the creators’ original intentions were. In making the images, they each would have been working within their own stylistic and cultural traditions. So, for example, anatomical representations made in Persia and Asia would have been created in line with particular traditions, in contrast to those of, say, 15th-century Europe, where the artists of “The Apocalypse” would have drawn on existing images in order to create the Organ Man [slide 1], and his accompanying anatomical figures.

There are many images in this gallery that do instruct and inform, yet, even where this is their primary role, they were often made by highly skilled artists and were valued for their artistic qualities too. In the 16th century, for example, Charles Estienne wrote of the aesthetic pleasure to be gained from studying the human anatomy, while Andreas Vesalius commissioned the engravings of his revolutionary book, “On the Fabric of the Human Body,” to be made in the great artistic center of Venice. Their work was appreciated not only by practitioners, but by lay people, too.

However, art relating to medicine has been made for many audiences, and it is the breadth of these perspectives that we were keen to explore and bring together to offer a compelling journey into the landscape of medicine. Some objects and images played a role within spiritual ritual or religious practice; others were made as artifacts intended to protect health or cure disease, as caricatures, as narrative paintings or as contemplative pieces that reflect on personal experiences or medical developments.

Do scientists and doctors today go to the same efforts as their forebears to make graphics, charts, tools and records aesthetically pleasing? How have values changed in this regard?

There is a strong tradition of the sciences and art being intertwined, and this continues. The artist Annie Cavanagh has said of the work she creates with microscopist David McCarthy [slide 9]: “It makes an idea concrete or solid, whereas interpretation of literature can go many ways.” Perhaps their extraordinary micrographs highlight one of the major changes in the visual images that are created today.

In the hands of scientists and practitioners like Annie Cavanagh and David McCarthy, we now have remarkable insights at a microscopic level into the body (so we can gain, say, a view of a blood vessel rupturing or neurons in the brain), of the appearance and actions of viruses and diseases, and the structure of medication. Such images can instruct and inform, yet they also give an aesthetic pleasure and reward the curiosity of a lay viewer.

What do you think is the single most powerful thing the collection says about the progress of medicine over the course of the periods it covers? What’s the most powerful thing it says about the progress of art?

It is interesting that you ask about progress. For me, the most powerful message the collection came to say was one about continuity. This eclectic collection does span major developments in medicine, diverse art practices and many perspectives from different cultures. Yet at the heart of it is the human body, and while we are each individuals across time and location, personally and within our cultures we have had to find ways to understand our bodies and ourselves in sickness and health. So, for me, at the core is a message about the human condition — and that is a thread connecting the past, present and future.

Do you have a single favorite image (or a favorite section) from the book? Is there something in particular you think readers might be surprised by?

I hope you don’t mind if I choose a favorite quality. It is that the images allow us to go on fascinating journeys to explore many strands of medicine across time and place, be they anatomy, medical or surgical practice, disease or medication. Follow the trail of herbal medicine, for example, and the images take us from 15th-century Europe to Japan and 19th-century Tibet, or explore astrology in medicine, and we can see visions of its practice across Europe, in Persia, Asia and Mexico.

View the slide show

: Emma Mustich is an assistant editor at Salon. Follow her on Twitter: @emustich. More Emma Mustich

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Komen for the Cure sells out women, again

The pink-ribbon charity, with a Sarah Palin ally as senior policy director, turns its back on Planned Parenthood

By Mary Elizabeth Williams

Karen Handel and Sarah Palin in August, 2010. (Credit: AP/John Bazemore)

Topics:Breast cancer, Health, Planned Parenthood, Cancer

First, the good: Since its founding 30 years ago, Susan G. Komen for the Cure has put over a billion dollars toward research, screening and awareness in the name of eradicating breast cancer. It’s certainly no coincidence that in that same span of time, breast cancer rates have declined sharply, and what was once a devastating diagnosis is now, for many, a treatable condition.

Yet when the news broke Tuesday that Komen was ending its funding for Planned Parenthood breast cancer screenings and services, the organization’s eagerness to throw Planned Parenthood – and the women who depend upon it – under the bus wasn’t surprising. It’s actually thoroughly unshocking for this venerated organization to pull such a crass, insensitive move.

The very name Susan Komen — with its direct association with a real woman, and founder Nancy G. Brinker’s promise to fight the disease that claimed her sister — is heart-tugging. Today, everyone who knows a woman likely has a breast cancer story – and with it, a Komen-flavored story about donning a pink T-shirt and running in a Race for the Cure, or shopping in October for pink-themed “Girls Just Want to Have Fun” notepads to help raise “awareness.” Along the way, Komen has become the McDonald’s of cancer — an easy-to-remember brand with a logo that demands little thought or effort from the consumer. Write a check, buy a ribbon, voila! You get to feel like you’re curing cancer.

It’s not that Komen is some questionable, Wyclef Jean-esque mess. It gets high marks from both the Better Business Bureau and Charity Navigator. Yet this is an organization that has repeatedly come under fire for its extravagant promotion of itself as an organization dedicated to a “cure,” when only a small portion of its expenses go to, you know, curing cancer. Komen itself cops to portioning just 24 percent of its funds to research – and 20 percent to fundraising and administration. For an organization with reported revenues of nearly $350 million, that’s still a lot of money for research. It’s an awful lot for itself, too.

Yet Komen remains pretty damn territorial around that whole “cure” thing. In a 2010 story for the Huffington Post, writer Laura Bassett pointed out that, according to Komen’s own financial records, it spends almost “a million dollars a year in donor funds” aggressively going after other organizations that dare to use the phrase “for the cure” – including small charities like Kites for a Cure, Par for the Cure, Surfing for a Cure, Cupcakes for a Cure, and even a dog-sledding event called Mush for the Cure. Let me just give you that number again. A million bucks a year. Robert Smith, better watch your back.

Komen has also, in its relentless pursuit of ubiquity and corporate sponsorship, aligned itself with more dubious product placement than a “Jersey Shore” marathon. It has a whole online store encouraging visitors to “purchase with purpose to end breast cancer forever,” where you can buy “silicone bling watches” and “Passionately Pink” ribbon-shaped cake pans. And because you’ll have to root around for the numbers, you can spend extravagantly on candles and “spirit gloves” without knowing that merely “at least 25 percent of the retail sales price … will go to Komen to help support … research and community programs.” Twenty-five percent of that $4.95 dog leash? Why, that’s more than a whole dollar!

Komen also famously outsources its merchandising. It’s teamed up with the likes of KFC for “Buckets for the Cure” – because nothing says you care about women’s health like a big vat of fried chicken. Komen has additionally sold a pink-hued “Promise Me” perfume that contains several toxins – including galaxolide, a synthetic musk that critics claim is a hormone disruptor. Komen has promised to reformulate the scent this year, but as Uneasy Pink calculated last spring, that’s still a lot of questionable chemicals to buy when roughly only 3 percent of the purchase price will go to Komen’s oft-invoked “cure” anyway.

And what of Komen’s latest, most potentially damaging stunt with Planned Parenthood? Komen says the move is just about “newly adopted criteria barring grants to organizations that are under investigation by local, state or federal authorities.” You know what else is pretty “new” around Komen? Its senior vice president of public policy, Karen Handel. During the Sarah Palin-endorsed, Tea Party favorite’s 2010 campaign for governor of Georgia, Handel declared, “I do not support the mission of Planned Parenthood,” making clear that she “strongly supports” laws prohibiting “the use of taxpayer funds for abortions or abortion-related services.” She did, however, emphasize that she “strongly support(s) the noble work of crisis-pregnancy centers.” If you were one of the world’s biggest charities and were looking to hire someone who had women’s welfare as her greatest imperative, would you go for someone who’d send them to a place that offers breast cancer screenings – as well as ovarian cancer screenings and HPV tests? Or someone who prefers a bunch of right-to-life fanatics pretending to be a medical facility? If you picked the former, you’re smarter than Komen for the Cure.

That Komen has raised staggering amounts of money is undeniable. There’s also pretty compelling evidence that it has done so in some pretty boneheaded ways. So given its track record, it’s fair to ask what happens now to the 11 percent of the Komen budget that goes to screening. Does it get funneled toward more glitter bracelets and “Promise Bears”? And what happens to the women who depend upon Planned Parenthood to tell them whether or not they have breast cancer? What becomes of mothers and daughters and wives and friends who believed that Komen’s commitment to “the cure” meant something more than protecting its catchphrase? It’s worth noting that while breast cancer rates are dipping, an October report from the American Cancer Society warned that they are declining more slowly among low-income women, and that “Poor women are now at greater risk for breast cancer death because of less access to screening and better treatments. This continued disparity is impeding real progress against breast cancer.” You know who loses when Komen backs away from Planned Parenthood? Probably not those nice, pink-clad ladies who attend Susan Komen wine-tasting events.

Women’s healthcare is not about lace-trimmed scarves and bottles of perfume. It’s sure as hell not about some feel-good, lip-service version of what my colleague Rebecca Traister calls “infantilizing Pepto-ed advocacy.” It’s not even — for anyone still stupid enough to think Planned Parenthood is some giant fetus-killing complex — about abortion. It’s about screening. It’s about treatment. It’s just that simple. The further away an organization gets from that mission, the more women suffer. It’s just that simple too. And you don’t make good on a “promise” to your dead sister by selling out women who need you most.

: Mary Elizabeth Williams is a staff writer for Salon and the author of "Gimme Shelter: My Three Years Searching for the American Dream." Follow her on Twitter: @embeedub. More Mary Elizabeth Williams

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L.A.’s porn mistake

As an actress who's worked with and without condoms, I can tell you: Mandatory enforcement is misguided

By Lorelei Lee

Lorelei Lee

Topics:Pornography, Sex, Health

Yesterday, in a widely anticipated vote, the Los Angeles City Council passed an ordinance requiring condoms to be used in all permitted adult films shot within their city limits. This move may be well intentioned, but having worked as a performer and director in the adult film industry for the last decade, I see this as an ineffectual move that might be bad news for the performers it ostensibly protects.

According to the ordinance, adult film production companies will pay an additional fee with their permit applications to cover an as-of-yet undetermined method of enforcement. Currently, condoms are used in the mainstream gay adult film industry (which includes only gay male films), while the heterosexual industry (which includes both lesbian and straight films) has used mandatory STI testing as a health and safety precaution since the early 2000s. Until May of 2011, the Adult Industry Medical Center, founded by retired performer Dr. Sharon Mitchell, ran the nationwide STI testing service and database that certified heterosexual performers as STI-free previous to their working on any production.

The ordinance comes in response to a campaign spearheaded by Michael Weinstein, head of the San Francisco-based nonprofit AIDS Healthcare Foundation. In the last few years, Weinstein, alongside similarly agenda-driven Shelley Lubben of the Pink Cross Foundation, has aggressively campaigned to mandate the use of condoms in heterosexual adult films, enlisting half a dozen adult performers, boycotting the Marriott Hotel chain for carrying condom-less porn, suing the L.A. Department of Public Health, and staging protests throughout Los Angeles at industry events and at AIM headquarters. Weinstein called AIM a “fig leaf” over the adult industry and backed the lawsuit that led to the organization’s financial insolvency and shutdown last year, which left a vacuum in health and safety protections in the industry. Weinstein seemed to hope that leaving performers without any kind of health protection would force legislators to mandate condom use. If the city of Los Angeles had not passed the ordinance this week Weinstein had a backup plan: Using AHF funds, he had collected 70,889 signatures to put the condom-mandate question to Los Angeles voters in June, a move that would have cost L.A. $4.4 million.

Among performers I know, there is a mix of opinions as to whether they mind actually using condoms on set themselves – a different question than the one of a legislated condom mandate. Some, like Nina Hartley, who is also a sex educator and has training as a nurse, are strongly opposed to using condoms at work, believing that they may actually increase likelihood of STI transmission. Personally, I’m not opposed to using condoms during my shoots – in fact, I already do. I became a condom-only performer in 2010, after eight years of working non-condom. But during my time as a non-condom performer, I never once contracted an STI on set that condoms would have prevented, and truthfully, I’m not sure that condoms actually keep me safer than testing alone. Further, I would never want to work on a set that required condoms in lieu of STI testing. The company I’ve worked for since 2010 is a fetish company, and as such, there is less emphasis on penetration in most of the scenes I shoot – meaning that I worry less about what Nina Hartley oh-so-glamorously calls “friction burn.” AIM founder Sharon Mitchell was also not opposed to condom use in porn; in fact, she may have given Weinstein the idea of targeting the Marriott.

What Mitchell was opposed to, and what I and every other performer I can think of is opposed to, is regulating a condom mandate through city or state government. The most basic reason is that ordinances like the one passed this week will not have the effect of increasing condom usage in straight porn. The adult film industry has only been legal for roughly 30 years. It is still looked down on by many civilians as a shameful business, and the workings of the industry are still, in many ways, shrouded to outsiders – which is a good or bad thing depending on whom you talk to. Many of the people attracted to this industry are still those who don’t care a lot about public opinion or about obeying authorities. In the case of a condom mandate tied to permits, many producers will simply shoot in Los Angeles without a permit. Others will move production outside of the city – to places like Las Vegas, San Francisco or Miami, where some companies are already established. With that in mind, I do have to wonder if moving porn outside of L.A. may be closer to what the City Council is actually after.

What performers like Hartley and I are equally opposed to is being condescended to by hypocritical zealots like Weinstein and Lubben who are obviously motivated by a concern for something other than our health and safety. Who have, in fact, shown a “blatant disregard” for the health and safety of industry workers by making it more difficult for us to use the protections we already have in place when their actions led to the closure of AIM. We’re also opposed to the squandering of AHF resources – resources that could be effectively used to help prevent and treat HIV and AIDS – on a political campaign against an industry whose health and safety regulations are already working. In the decade since AIM began the program of mandatory testing, six performers have tested positive for HIV, and only three of those have shown to be from on-set transmissions. That’s three transmissions during the course of filming tens (or perhaps hundreds) of thousands of scenes. There are no real statistics as to how this compares to transmission rates in the general population. Rather than concrete evidence, Weinstein has used references to AIDS as a scare tactic, leading those who have been affected by the disease, like City Councilman Bill Rosendahl, to believe that a condom mandate would actually have some effect on HIV transmission rates. Condoms, even when used “consistently and correctly,” do not have a 100 percent success rate. Although numbers vary, one study showed condoms to be only 80 percent effective against HIV transmission in couples of different sero-statuses (in which one partner is HIV positive and the other negative). I have a hard time believing that condom mandate, if it is even possible to enforce, is likely to have a higher success rate than testing.

Weinstein has remarked that the L.A. attorney’s office is trying to “thwart” voters’ will, but what stake do Los Angeles voters have in this matter? I’ve heard too many times the claim that the adult industry is acting irresponsibly by portraying barrier-free sex when – as the argument goes – people of all ages are getting their information about sex from pornography. But the overwhelming majority of porn is fiction, and the world it portrays is one of fantasy. I have to believe that most people who encounter porn know this. We don’t generally expect other forms of entertainment to be responsible for disseminating health and safety information. If pornography is in some capacity replacing sex education for people in this country, then mandating condom use is a ludicrously indirect way of addressing that problem.

Industry workers and civilians alike may recognize the implications that government regulation in this arena could have for free speech and privacy, a position articulated by law professor David Groshoff in the Huffington Post earlier this month.

Of course, another reason that performers oppose a condom mandate is that porn with condoms doesn’t sell as well as porn without condoms, and that leads directly to fewer jobs. After four performers tested positive for HIV in 2004, many of the big L.A. studios tried making condom-only films. All but a few lost enough money that they went back to shooting non-condom. In the last five years, porn sales have been deeply reduced by Internet pirating and the proliferation of “amateur porn.” There are fewer scenes being shot in the valley, and performers are working significantly less. No one wants to lose more work. If consumers really want to see adult productions use condoms, then voting for a condom mandate is not the way to make it happen. The only effective way to make condoms standard in adult productions is for consumers to vote with their wallets, by actually buying porn in which condoms are used.