It’s Paperback Release Day for In the Kingdom of the Sick!

It’s hard to believe it’s been over a year since In the Kingdom of the Sick was published. It’s been a busy spring and summer with book-related speaking events, teaching summer classes, and some medical stuff, and somehow it’s the release date for the paperback version already.

I’m really excited, and I hope that the book will reach a new audience. The issues the book raises are evergreen, and the questions I receive at panels and events and e-mails I respond to continue to advance the conversation about chronic illness in this country.

Writing a book is such an emotionally volatile process—you toil away for years, send your book out into the wide world, and if you’re lucky you get some good pub date exposure…and then life very much goes on as it was before. Well, that’s not totally accurate; I am certainly getting more sleep and sunlight now that the writing and editing and intense promotion is over, but it’s very much a process of detachment. I poured everything into each stage of the process, and now it’s out there, and I am here, teaching, writing, mothering.

I am extremely grateful for all the support the book received when it was published, from appearing on Fresh Air, getting reviewed in the Wall Street Journal, being named an Editor’s Choice for Adult Books 2013 by Booklist, to all the writers and bloggers who took the time to feature the book and post reviews and interviews. A more complete list of reviews and interviews can be found here. I am also thrilled with the opportunities I continue to receive to talk and write about gender and pain, rare diseases, prevention and public health, etc., and hope the conversations about chronic illness and the ways in which culture, science, and technology shape the experience of being a patient will keep going.

I’d love the paperback to reach new readers, and so I’m asking for a little bit of help. If you can, will you:

1. Share this post on Twitter, FB, and other sites
2. “Like” the FB page for the book to stay updated on events and relevant articles
3. Follow me on Twitter
4. If you’re read In the Kingdom of the Sick, it would be great if you posted a review on Amazon. It is important exposure, especially as the paperback debuts…

Thanks so much for your continued support, and if you pick up a paperback copy, I’d love to hear from you!

PS–Incredibly, this month marks six years since my first book, Life Disrupted, published, and it’s awesome to hear from readers regularly and know that the issues surrounding chronic illness and young adults still resonate. Thank you!

Pub Date Aftermath

It’s been a whirlwind week, and I want to take a moment to quickly check in and say thank you to everyone who has supported me, and to say hello to all the new readers who found their way here through my interview on Fresh Air with Terry Gross and other press events this week. It’s great to have you here, and I’ve so enjoyed reading through all the e-mails and comments and hearing from you.

Fresh Air was an amazing experience, and I am so grateful for the opportunity. I also got to field some great, insightful questions at my Northeastern University event the other day, and look forward to my reading and signing at Brookline Booksmith on April 17th.

For events, press, and virtual book tour links, make sure you check out my In the Kingdom of the Sick page on this site, where I keep an accurate and updated list. I also use my Facebook author page and Twitter account for more immediate links, events, and articles of interest, so I’d love to see you there. While I will continue to do round-ups here on the blog for book-related news, I plan to return to more regular, substantive posts.

Up this coming week? A look at nutrition, chronic disease, and prevention…and why I’m inching closer and closer to vegetarian cooking.

The Stigma of Illness: An Article, An Interview

As a patient, it is always pretty neat to see health-related issues I care about handled in the mainstream media. And when they are handled well? When there is research and depth and narrative all packaged in an accessible yet thoughtful way? That makes me smile.

As a writer, it is a whole different kind of experience to see issues I am so heavily invested in researching and writing appear in popular mainstream media. As many of you know, I am publishing a second book, and it is a social history of modern chronic disease. It is a project that involves an extraordinary amount of research, reading, and interviewing, and interviews aside, most of it takes place by myself, often late and night and before the sun rises. It is an exciting endeavor, but sometimes an isolating one.

So when I read an advance copy of “The Stigma of Illness” that appears in the May Issue of Woman’s Day (on newsstands right now), I was excited. The stigma around illness, including issues of gender, socioeconomics, and politics, is, quite obviously, a major element of the book.

And when I saw research that I’ve used in my own work for several years and discussion of ideas I’ve carried with me everywhere I go for such a long time, I was hooked. People are talking about this stuff. People realize stigma matters.

The article looks at the judgments and blame often placed on patients, particularly those who live with conditions where individual behavior often plays a role in transmission or severity of illness. Individual responsibility for behavior versus genetics or random chance is a comparison I find fascinating, and the inherent (and harmful) hierarchy of patients it sets up is one the most compelling and thorny issues in modern chronic illness.

“For years, social scientists such as Gregory Herek, PhD, a professor of psychology at the University of California-Davis, have been trying to unravel why certain conditions seem to carry “marks of dishonor,” writes article author Joan Raymond. “Their conclusion: Whenever there’s a widespread perception that something can be attributed to personal weakness or poor lifestyle or moral choices, that disease is going to be stigmatized.”

So why such an article right now? Amy Brightfield, a health editor at Woman’s Day I spoke with yesterday, acknowledges these issues have always been in existence, but play an even larger role in public discourse right now, especially when it comes to health care reform and health insurance coverage.

“People talking more and more about what should and shouldn’t be covered…illnesses that tend to get stigmatized don’t tend to get covered as well,” she says. She points to mental health problems a prime example. “You have to prove some physical concrete toll it is taking, which why it is so hard to get coverage for mental health because of the stigma.”

With profiles of three women living with some of the most heavily stigmatized conditions—AIDS, lung cancer, and bipolar disorder—the article does a good job of laying bare the tension that exists when morals, person decision-making, or sanity are questioned as a result of physical illness. The non-smoker who contracted lung cancer anyway and the AIDS patient who contracted the virus in a monogamous, heterosexual relationship profiled in the article know firsthand how painful judgments and assumptions about lifestyle and worth can be.

And of course these are just a few of the illnesses where individual responsibility for behavior is called into question. Obesity and its attendant complications are at the top of the list, too. Brightfield, who is working on a story right now about different communities’ initiatives to reduce obesity and conditions related to it, says personal responsibility is only part of a more complex problem. It’s one thing to say people should eat right and get more exercise, but if you live in an area where fresh produce is hard to find, if you can’t afford a gym membership, can’t walk to school or work, etc, it isn’t as easy or obvious.

“The modern world is not conducive to exercise and making healthy choices about food,” she says.

Turning back to the women profiled about stigma, it is clear that gender often underlies judgments about illness, particularly since more of the nebulous conditions like Chronic Fatigue Syndrome or fibromyalgia, which are harder to isolate biological causes for, affect more women than men. Given the historical context of “hysterical illness” and the huge differences in acknowledging and treating chronic pain in men versus women, there is clearly a lot more to be said about all of this (trust me, I’m working on it!)

Still, as Brightfield points out, and as many patients I’ve spoken to concur, stigma is not gender-specific. Even if we just look at men living with AIDS or lung cancer, it is clear that gender may be a dominant force but it is not always a defining force.

Stigma is equal-opportunity. And because we’re all living with a constellation of hereditary, environmental, socioeconomic, and other lifestyle factors, it’s not our place to assume or blame.

“Don’t judge anyone because they are sick….that’s why we did the story, to show that people get stigmatized…in the illnesses that we featured here, you don’t know the whole picture medically because you are not the doctor,” says Brightfield.

How many times have you felt blamed or judged for your illnesses, whether implicitly or explicitly? Was it by a doctor, a friend or loved one, or even a total stranger?

To read more about this, and perhaps to empathize and commiserate with the brave women featured in the article, make sure you check out the latest issue of Woman’s Day.

Disclosing Physcians’ Gifts: Analysis, Articles, and An Interview

As a patient, patient blogger, and all around news junkie, I have to admit when I first heard about health care reform legislation in Massachusetts aimed at reducing costs this past March, I was more than interested. When I learned that part of this legislation involved a ban on gifts to physicians from pharmaceutical companies, I was even more interested. Reduce costs and limit potential conflicts of interest? My heart trilled just a bit. What’s not to love?

But if a recent flurry of headlines about the controversy and heated opinions are any indication, newly modified legislation that makes public any gift of $50 or more a physician receives from a pharmaceutical or other company is anything but simple or obvious—especially in a state like Massachusetts, where the life sciences sector is a huge part of the economy and academic research centers and hospitals are integral.

To wit, an editorial in the Boston Globe urges Governor Deval Patrick to stand firm on the bill, writing that “the state is right to make sure doctors make medication decisions based on merits, and not meals.” At the same time, an op-ed penned by leaders from the biotech and medical device industries outlines their case for why the legislation “will absolutely affect whether companies continue to choose our world-class hospitals for this important clinical work.” Read through them for more background; there’s a lot to digest.

It’s certainly a good time to be a health news junkie in Boston, no?

As always, what I’m interested in how these issues will affect our daily lives. As a patient with rare diseases who knows firsthand how important research and development are to patient outcomes, how could I not be curious? After all, clinical trials are where the developments we count on come from, and if this legislation will have a negative impact on clinical trials, as opponents claim, I’m certainly paying attention.

It makes plenty of sense to me why legislators who want to reform health care and contain costs would support this bill, and it makes a lot of sense to me why patients would care about what their doctors are getting from the companies that manufacture the medications and medical devices that treat them. Patients want the treatments that are best for them, and those are not necessarily the ones that have the largest marketing and promotions budget. Transparency is a hot-button issue in health care right now, and with good reason in this context.

It’s important to me I understand where the positions both sides are taking originate, and clearly it’s not enough to pit this in terms of disclosing physicians’ gifts or not, or making comments about sandwiches and pens. To that end, I chatted today with Dr. David Charles, chairman of the Alliance for Patient Access, a non-profit organization that teaches physicians how to advocate to ensure patients have access to appropriate therapies, to see why there is such opposition to this legislation.

(Since it’s all about disclosure, the AfPA receives funding from industry trade groups).

According to Dr. Charles, a fundamental problem with this portion of the legislation is that it has the potential to set up a “complete misunderstanding” of the relationship between universities, physicians, and the companies (pharmaceutical, medical devices, biologics, etc) that support these clinical trials—and he considers this partnership imperative if we’re to continue seeing progress in understanding and treating diseases like multiple sclerosis or Alzheimer’s, to name but a few.

“This is a step backwards, not forwards,” he says.

Since the information published on the state Web site would mention the physician’s name and the money he/she received that went above $50—and not how the money was used—he fears the flow of funding could be misconstrued. This also goes along with other claims (see links above) that this kind of disclosure would make physicians less likely to participate in clinical trials, meaning companies would then invest in them in other places.

For example, money that goes to the university to help support clinical trials would look like it was simply being paid to a physician, not the university and all the staff involved in the trial. Or, money allocated for a physician to teach other physicians how to use cutting edge technology and devices that improve patient care would not be identified as such. Dr. Charles worries this “disclosure without context” could make what are completely appropriate and essential practices seem inappropriate.

He also had some interesting things to say about the writing of prescriptions, which is often one of the first criticisms patients and policy experts point to when discussing conflicts of interest and gifts from pharmaceutical companies. “Writing prescriptions is not the issue at hand,” he says. Rather, helping physicians understand when to select certain medications—what the side effects are, what drugs they work the best with and which ones they shouldn’t be prescribed with, etc—is the key issue. He views educating physicians about these variables, much like training physicians on how to use new equipment and other forms of continuing medical information, as both completely appropriate and essential for the best care for patients.

So patients (and readers from all points of view), I’m interested in what you think about all of this. As you can see from the media blitz on all sides the debate wages on, but the bottom line is, what is best for the patient? Do the potential risks to the partnership so important to clinical trials outweigh the benefits of the concept of transparency so many of us hold as paramount these days? While we wait for the Governor’s response, I’m eager for yours.

UPDATE, 8/11: Here’s an update article from today’s Globe that discusses the health policy Gov. Deval Patrick signed into law. Looks like transparency wins–or at least gets a big push! Check out the article; there’s a lot of good info the primary care physician problem I’ve written about before.

Following Up on Living Proof…

In a nice coincidence, I did an interview with Deborah Harper of Pyschjourney today that emphasized many of the themes in my previous post–a pioneering generation of adult patients; the impact of spousal caregiving on younger marriages; transitioning into adult care as a younger adult, etc. While cystic fibrosis is by no means the only example of this type of disease whose population is truly re-shaping medicine, it is a great example nonetheless. Of course we talked about lots of other stuff, too, and you can click here to download the podcast.