Update on the Clinton Blogging Event

Posted on June 17, 2009 by ledwards

I wanted to do this update yesterday but am in the middle of a prolonged (epic) technology fail so things have been moving a bit slowly. Anyway, as you can see from the picture above (I am the second to last person on the right; you can just see my head) there was a good group of us at the Clinton blogger event. The conversation included many topics, from health care and clean energy to digital literacy and human rights. While I focused on health care and the specific threads most relevant to the chronic disease population, there are many other compelling perspectives on the issues.

For some other summaries and analysis of the event, check out some of the posts on Think Progress, Lawyers, Guns and Money, Feministing, and The Daily Kos.

It was a great mix of bloggers and backgrounds, and I feel fortunate to have met such dynamic writers and thinkers in person. (And of course, I’m still sort of pinching myself that I sat next to President Clinton. Couldn’t help making the Georgetown connection with him—Hoya Saxa!)

A preview of an upcoming event-related post: Applying thoughts on race and respect to the health care world…

Talking Health Reform with President Clinton

Posted on June 16, 2009 by ledwards

“I’ll be surprised if we don’t get health care reform,” President Clinton said yesterday.

I should note two things about that statement—first of all, coming from someone with such an informed view of the situation, it is encouraging. Secondly, I didn’t get that quote from a press release or a conference call. I was actually sitting next to Clinton in a conference room where a few other bloggers and I had the chance to converse with him about health care, clean energy, and some of his projects at the Clinton Foundation.

Now, since most of my conversations take place in my home office with a speaker phone, a digital recorder, and frantic attempts to keep the dogs from barking and none of them typically involve sitting with a former leader of the free world, clearly this was an amazing experience.

Given its traction right now it was no surprise that we spent a lot of time discussing health care and health reform. As a resident of Massachusetts and a rare disease patient,
I came prepared with questions about primary care shortages with increased access to insurance as well as the treatment of existing chronic diseases.

Perhaps the comparisons between the current push for health care reform and Clinton’s efforts in the 1990s are inevitable, but the overriding sentiment I got yesterday was that yes, things really are different now. For one, Clinton noted the political and psychological landscape the Obama administration faces is much different. Disparate groups like health insurance companies, small businesses, and many other groups with different stakes in the debate are more willing to collaborate.

More tellingly, as Clinton said, “everything is worse now.” I know many readers of this blog can attest to that fact. Fifty million Americans remain uninsured, and as I mentioned to a fellow blogger before the meeting started, those who are underinsured often face calamitous situations. Adjusting for inflation, we have two-thirds of the disposable income we had when Clinton left office, and health care costs have doubled.

We’ve heard much of this before—our system is the most expensive but has poor outcomes; for our economic and physical health, reform is imperative; better prevention and care now means a healthier nation down the road. The real challenge is to change the way health care is delivered while still keeping costs down. It sounds so simple and yet so daunting at the same time, doesn’t it?

The Clinton Foundation is heavily involved in HIV/AIDS care in developing nations, and in discussing some of these initiatives the President mentioned the reluctance governments have to set up stable health care systems that account for malaria, TB, and the other very real health threats that end up affecting so many. As he said that, it occurred to me that our own switch from an acute, reactive system to a preventive, proactive system is no less significant and necessary. A piecemeal approach will not do it.

One of the most common concerns raised about Obama’s public option relates to Medicare reimbursements. (Of course it is the purchasing power of that potentially enormous patient population that many hope will curb health costs with more competitive private rates.) Anyway, an interesting distinction Clinton made is that reimbursement is not the problem; inefficiency is. It makes sense, but when I hear people talking about Medicare and modeling the public insurance option after it, so often the conversation stalls at reimbursements.

Related to this, when pointing to successful delivery models in Green Bay, WI and other places, President Clinton acknowledged that health care is both “an art and a science.” A viable public option would need to be outcome-based if we’re to reach a goal of more efficient care.

Obviously there are many compelling reasons to embrace outcome-based treatments. For “clinically interesting” patients like myself, I hope a revamped health care system really does still leave room for the “art”—more often than not, that has made all the difference for me.

(Stay tuned for more posts from this event, but I need to add that not only does President Clinton read blogs and turn to them for information, he has also read Mountains Beyond Mountains and is friends with its main character, Paul Farmer—if you’ve read my post on narrative medicine, you know how fanatical I am about that book. If you care about public health and health disparities, it is an absolute must-read. But don’t just take my word for it, take President Clinton’s as well.)

Thank Goodness I Like Vegetables

Posted on June 11, 2009 by ledwards

I realized just how much my lifestyle has changed over the past few years when a recipe for a weekend dinner party called for sugar, and I didn’t have any. Nor did I have artificial sweetener, artificial sweetener that looked and tasted like sugar, or anything else sweet, save the maple syrup we bought for when my niece slept over several months ago.

On the one hand, I felt a bit domestically delinquent. We usually had some on hand for company, but beyond that, isn’t sugar one of those staples every kitchen needs? Then again, we don’t usually have flour of any kind, either.

As I’ve written before about the evolution of my gluten-free life, I’m more the “explore naturally gluten-free foods” type of girl than I am someone who looks for gluten-free versions of “normal” food—but I recognize that’s just personal preference and that each person needs to do what makes the most sense for his/her circumstances.

Lately, it seems like celiac disease is popping up everywhere. Of course, there’s a certain celebrity’s newly published book stirring up a lot of comments, but there’s more to it than that. The other day at Gluten-free Girl, Shauna mentioned how many new products and companies are now on the market offering gluten-free baked goods, mixes, etc. In my own area, I’ve recently discovered that restaurants like Papa Razzi and Charley’s offer gluten-free accommodations, and I love hitting up regular spots like Jake’s Dixie Roadhouse, which has a GF menu and strict cross-contamination measures.

What’s more, the amount of people around me who know what celiac is or have just gotten diagnosed with it is growing.

“Do you think it’s like food allergies, where more and more people get celiac now?” someone asked me.

“Honestly? I’m no expert, but celiac is so often missed because it is so tricky to diagnose. I think the reason more people are now told they have it because awareness has grown; patients think to ask their doctors about it, and doctors think to check for it, even when “classic” symptoms might not be there,” I said. These are people who may have suffered for years without knowing why.

Anyway, all this is to say that much has changed since I was first diagnosed five and a half years ago. I can’t believe it has been that long. I’ve learned how to make a lot of new foods, I go out to eat without fear or hesitation, we’re growing our own vegetables in our yard, and I’m even in a supper club whose members view the challenge of GF cooking as a good one.

But now there’s a wrinkle. No, it’s not dairy; I cut that out two years ago. No, it’s not processed food; that went out the window a long time ago.

I’ve mentioned before what an soul-crushing, lung-battering winter I had this year. (Okay, maybe slightly dramatic, but it was Not. Good.) As a result of that seven-month siege, I am on a very aggressive, very long-term suppressive course of rotating antibiotics. I don’t talk about it much because there are so many strong opinions about these medications out there, and yes, they are overused by people with colds and yes it’s a problem…but for people like me, they are, quite literally, a lifesaver. Not only do they save lives in acute infectious situations, but they can also help slow down irreversible lung damage. If it’s a choice between several weeks a year as an inpatient and trips to the ICU and suppressive treatment that actually gives me some quality of life and helps control the many infections I get, it’s a no-brainer.

But my aggressive treatment is not easy on the body, most notably the stomach. As evidenced by lots of GI issues and a lovely film on my tongue, my long-term use of these meds has given me candida, an overgrowth of yeast in the intestinal tract (it happens when meds kill the healthy gut bacteria) that spreads throughout the body. Lovely.

The treatment? Well, coming off the meds isn’t an option right now, so I’m trying to follow the candida diet, which essentially means eliminating all sources of sugar, yeast, and fermentation in the diet. Now, clearly I don’t eat a lot of sugar but it’s more complicated than that: naturally occurring sugar in fruit is out; vinegars, salad dressings, honey, tomatoes, white starches…all out. The list goes on, trust me. Again, not the biggest deal since I don’t eat some of this anyway, but if you’ve read Life Disrupted you know how I feel about my honey mustard dressing.

Now, my lunch of green beans and chickpeas is a bit sad and lonely.

“Um, so what do you eat?” a friend asked, knowing I limit animal protein to once a day.

The list is short.

When I was first diagnosed with celiac, I never went through an angry stage or mourned all the things I couldn’t have; I was ecstatic there was something wrong with me I could actually fix. (This doesn’t happen often in my world.) I’m channeling that sentiment to this latest dietary challenge—I feel pretty crummy so if taking these steps can improve things even a little, it’s totally worth it to me.

But if you have any pointers, I’m listening.

Great Expectations

Posted on June 3, 2009 by ledwards

I have a definite routine to my reading—every morning, it’s the Boston Globe, the NYT, and then I scan Salon and Slate, keeping track of relevant news, health/science updates, etc. (I get up early and I’m a fast reader). And like many of you, I have a blog routine, a bunch of sites I check in on regularly or follow through feeds.

One of my favorite non health-related blogs is Penelope Trunk’s Brazen Careerist, which is “advice at the intersection of work and life.” I don’t even remember how I started following it—likely it was a blog read by someone whose blog I read, because isn’t that how it always works? Her posts about Generation Y (by most measures I am technically a “Y” but sometimes I’m an “X”), and navigating a career path her thoughts on the “life” part of the work-life balance are smart, entertaining, and often funny. They make me think, even if I don’t always agree, and that’s why I like them so much.

As I sat down to write a post this morning—coffee consumed, chest PT and reading completed, full day’s worth of tasks listed and ready to be tackled, and the same overwhelmed feeling I went to sleep with currently coiling my stomach—I was blank. Sometimes I have posts I am burning to write, paragraphs form in my head during my treatments, transitions cement themselves while I am at the gym, ideas get jotted down on my laptop’s Stickie notes or in the notebook I carry with me everywhere.

When I don’t have something I am really interested in or compelled by, I won’t post for the sake of posting. I realized, though, that this overwhelmed feeling was something I wanted to write about, this mix of anxiety, apprehension, hope, optimism, fear, and excitement that is my constant companion lately. But I’m less interested in the teeth-grinding and the late-night list-making part of it, and I bet you are, too.

No, a much better way to broach this topic is to turn to this post on Brazen Careerist, “Career lessons from Susan Boyle’s Success.” Penelope makes several great points about talent, hard work, and mentors. But the part that resonated the most with me, the thing I needed, was about Seth Godin’s writing on The Dip. She summarizes his idea: “…You have to try something big, and you have to accept that anything big and huge requires you to have a dip – a point when you are wondering if it is worth it. And that’s where most people quit. For the most part, you cannot do something big without going through this process.” She drew parallels to her current start-up company, and to Susan Boyle’s choice of a really hard, really “big” song to bust out with on Britain’s Got Talent.

I think a lot of us are in various stages of the dip right now. Maybe we’re trying to reinvent ourselves after an economy-inspired career change. Maybe we’re at tough parts of a diagnostic health journey, or working through a challenging stage in a relationship.

(Or maybe, like in my house, we’re grappling with a book project and other work that is as exhilarating as it is exhausting, or we’re preparing for a huge exam with a ridiculous amount of material covered and an insanely low pass rate. You know, just as examples.)

Whatever the scenario may be, we’re all operating on the assumption that the hard work and sacrifice are worth it, that the difficult decisions we’ve agonized over in bed, in doctor’s offices,at our desks, etc are the right ones.

We all have our dips, personally and professionally. And I also think that most of the time, now matter how tired or confused we are, we know it is worth it, that anything worth having is worth the demanding journey to get to that goal.

But it sure is nice to have someone remind us now and again.

A Better Place

Posted on May 27, 2009 by ledwards

This past weekend, I opened up my office window and let the warm air fill the stuffy room. It was a gorgeous day where the sun was high and warm but the breeze kept the heat from being oppressive. Later, when we took a break to walk the dogs around a nearby pond and I blended in with the cyclists and joggers and hikers, I even felt healthy.

(Okay, so maybe I coughed up half a lung when we got home, but productive coughs are a good thing in my world.)

More than that, I felt so far removed from the long, hard winter (well, fall, winter, and most of spring) I’d left behind me. In my consciousness those months were wrapped together underneath a disorienting haze, in sharp contrast to the bright sunlight, blue sky, and green grass before me. Nothing about them was distinguishable, and I preferred the abstraction of it. It proved to me there was enough distance to solidify the change I felt: the change in seasons, the change in infection level, the change in medication protocol that, while challenging, is definitely worth it.

This morning I awoke to chilly temperatures, a gray sky, and intermittent rain. Not a big deal, and certainly conducive to working through a heap of writing and editing.

But for one brief moment, as I kicked water off my sneakers and unzipped my sweatshirt, I suddenly had a very vivid image of the winter. One specific day in winter, one that stood out again in my mind just as definitively as the bright sunshine that lit up my office just days before, and one that is emblematic of the whole seven month period:

It was a Thursday. I remember watching the snowfall total in the morning and praying, praying classes would be cancelled because I felt terrible but I’d already cancelled them the day before due to illness. I knew I couldn’t scrape by managing them online again. My peak flow readings were so far into the red zone I wouldn’t even tell my physical therapist what they were (but they’d been like that for days so I’d adjusted to it.)

As the snow gave way to icy, freezing rain that turned the roads from slick to downright treacherous, I knew using our tiny little car wasn’t an option. The walk to the subway station is normally very short, but between the snow, the ice, the heavy bag, and the lack of lung capacity I had from the acute infection, it took me 25 minutes. Getting through class took every remaining ounce of energy (and oxygen, apparently) and what I remember most from when I exited the building was this:

I was stuck. It was now nighttime, and there was no way I could get to the (nearby) subway stop and get home. Not with this bag, this infection, these lungs, this tired body, and not in this frigid slushy mix.

(And my stupid galoshes were leaky. Sure the pattern ones look all cute, but they can’t hack it in New England.)

I needed my nebulizer, I needed air, I needed my briefcase to not weigh so much, and I really needed it to not be snowing/sleeting/raining/icing. I probably needed IV antibiotics too but that particular conversation would happen a few weeks later.

Or, I needed my husband to come and get me, snaking his way through city traffic to take my bag and my hand and somehow get me home.

And of course he did, and of course we made it home, and of course I’d been in situations far more serious than this. But for some reason that night, the commute, the cold, wet feet, the bloody cough, the absurdly heavy bag, the rawness—they all conspired to wear me down in every way.

Maybe it was just the chill in the air today that made me remember how raw I felt that night, or maybe it was the wet feet. Whatever triggered the memory, it was brief and fairly inconsequential, filed away for a blog post later today but otherwise buried underneath morning headlines, client specifications, and e-mails.

So why go through the process of describing an event that ultimately has little impact on me now? (Other than to flex my descriptive writing muscles after hours of more technical writing and research, that is.)

For a project on gender I’m researching the relationship between chronic illness and PTSD. At first, I was looking at the potential emerging link between PTSD in soldiers who have seen combat and the development of chronic illness later in life. But as I dug deeper I found another wrinkle, one that hadn’t even crossed my mind: formerly healthy people who developed PTSD as a result of sudden, life changing (and often excruciating and traumatic) illness. For patients like this who improve and then later relapse, even if it is not as severe a relapse as the initial event, the worsening symptoms can serve as sort of a trigger that brings them back to the horrible moment where everything changed radically, or back to moments of unimaginable physical pain, etc.

(I’m summing a lot of this up and probably not eloquently but hopefully it makes sense.)

It wasn’t a phenomenon I’d heard of before. And clearly my little example of wet feet making me think of a nasty infection and a nasty storm is just that: a little example of the power of memory and of certain details to bring us back to a different place. I’m lucky the place I went to wasn’t bad, just a blip in a crummy winter, something I could use as stand-in for an experience that is not mine. I’m lucky to look back and say,”I’m in a better place.”

If any of you out there do have personal experience with this, though, I’d love to hear your insights…

Dissecting a Diagnosis

Posted on May 20, 2009 by ledwards

Since my presentation on employment and young adults at DePaul a few weeks ago, I’ve been thinking a lot about diagnosis. During the Q&A, we talked about whether there was any way around the almost myopic focus on the condition and symptoms new patients often experience during and right after diagnosis.

I considered that question for several days after I answered it (in short, it is a life-altering experience so in the beginning, it seems natural to me that it would consume a lot of emotion). I’m not one to start constructing categories for groups of patients, since the universality of the chronic illness experience is something I feel strongly about, but I have always had one major distinction in mind: patients who have been sick their whole lives, and patients who were healthy adults before they were patients with chronic illness.

I think that distinction is important, and that’s why I tried to include patients from both camps in my book. Each group has its own unique challenges: people like me never have to go through that huge transition from “before” and “after” that formerly healthy people do. We do not have to grieve for what used to be, or mourn for the healthier, more dependable bodies we used to have.

(Not that we don’t have our own set of losses to deal with; we do.)

It’s a question that seems to be popping up on blogs and in discussions a lot lately: Which is better, to have known healthy and a “before” or to have never known a “before?”

All I can say is that this is my normal, so I don’t miss what I never had. Nor do I really spend too much time thinking about what it would be like to have a different experience, to envision my life minus the major medical calamities and minor comical indignities.

But lately I’ve realized there is more to it than simply healthy versus sick, or before versus after, and it relates to the process of diagnosis. True, I will never share the same shock and transition that once healthy people do when they become sick, but I can commiserate with the “before” and “after” of getting a diagnosis. An accurate one, I mean.

Sure, I’ve been sick since my first auspicious breath of air (hello collapsed lungs and pneumonia) but for the majority of my twenty-nine years, only some of what is wrong with me was diagnosed and treated correctly. I know what it’s like to have doctors assume you must not be following their directions if you are not getting better, and I know what it’s like to finally get a diagnosis that matches your experiences and symptoms, that takes all the complications and contradictions and makes sense of them. As I’ve written before, when the explanation of illness matches the experience of illness, it’s a good thing.

Last fall, I asked you about the semantics of illness, where I made distinctions between the biological aspects of disease and the patient’s subjective experience of living with illness. As I wrote in the follow-up on language and the patient experience, having PCD and bronchiectasis did not make the actual symptoms I’d lived with forever different; it just made them more understood.

Which leads me to my final point—I realize it’s been a circuitous route this time. (Honestly, my propensity to ramble is directly related to my caffeine intake, and the filter in the coffee pot has been broken all week. Less coffee=more words.)

Where does all this leave the people who live with symptoms but have not received a diagnosis? If a label doesn’t change the course of treatment, perhaps it’s not as big a deal. But what if it would change it, the way it changed mine? And more compellingly, does it change the way the external world—from doctors and nurses to employers to friends and family—responds when the patient can give a concrete name or label?

If it does, then the real question is this: why are we so intolerant of ambiguity?

Women and Health Care: Are We Feeling Better Yet?

Posted on May 13, 2009 by ledwards

Since writing and publishing Life Disrupted, I’ve paid special attention to books and anthologies that deal with the patient narrative. (I have a more in-depth exploration of narrative medicine and a list of suggested titles if you’re interested.) This spring I reviewed Everything Changes, a book about young adult cancer patients, and found the similarities between young cancer patients and young adults with chronic illness compelling.

More recently I had the chance to read
Are We Feeling Better Yet? Women Speak About Health Care in America, edited by Colleen McKee and Amanda Stiebel. With a forward written by my friend and colleague Jenni Prokopy of ChronicBabe and a submission from one of my favorites, Paula Kamen, I was especially excited to jump into this diverse collection of essays. Here again I found the universal questions and insights that came out of very different experiences with illness and health care to resonate the most.

When I hear the phrase “health care in America,” I instinctively expect a lot of facts and figures: how much chronic disease costs have risen, insurance premiums and co-pays, political debates over mandates or Medicare reimbursements, how many Americans remain uninsured or underinsured. Let’s face it, the system is confusing quagmire of contradiction and disparities, and much of what we read about is analysis or opinion about these issues.

While facts and figures are seminal to health care reform, I have always believed in the equally compelling power of the personal narrative. Regardless of differences in diagnoses, treatments, ethnicity or geography, these women’s stories all reveal frustrations, challenges, and insights that speak to the central question linking these 21 essays together: Are we feeling better yet? As the editors write in the introduction, “To even to begin to answer that question, the patient’s voice has to join the conversation. She can’t be entirely spoken for by charts, case studies, shiny magazine, politicians, physicians, pharmaceutical reps. For genuine healing, we must tell our stories—and hear them—in a way that is honest and real, even when the truth is ugly, unladylike, and sometimes, not even nice.”

It was with that expectation of unflinching narrative that I dove into the essays, and as a patient and a writer, I was not disappointed. I’ve come to expect topics like poverty, racism and health disparities, and inefficiency and bureaucratic stalemates to be a large part of the patient experience and a necessary part of any discussion. However, I was glad to see this (unfortunately all too familiar) terrain handled so well, revealing nuances to these universal problems that remain in my mind.

Terri Griffith’s wry rumination on “free care”—a merry-go-round of pushing papers and passing the buck that left her without therapy for depression and wasted a lot of time and resources, made me clench my teeth in frustration for her. The staggering wait times (up to eight hours) and dilapidated conditions Birgit Nielsen witnessed at a Los Angeles county clinic for women was bad enough; the shocking racism her doctor displayed towards Spanish-speaking immigrants and the preferential treatment her white skin afforded her was worse. Based on these experiences, we certainly have a ways to go in terms of providing quality care to everyone.

In “A Slight Case of Hypomania,” Anita Darcel Talyor writes about living with mental illness and the constant choice between paying for treatment or paying to live her life, between remaining untreated or living in an overly medicated, dulled state. But her personal negotiations give rise to larger questions:

“Sometimes I wonder if normal isn’t a myth, a state of magical realism, a place of the imagination against the backdrop of lies. Is normal a thing of the middle class suburban family? Is it as chic as the gay city dweller? Is it middle American red or coastal blue? Is normal the adjective of the elusive mainstream? Can I be normal with a diagnosis? Is it normal to be educationally elite yet live in poverty? Can I be normal if I am fat?” (58).

Moments like these, when the many universal complexities of the patient experience are laid bare, are the ones that resonate most with me. I’ve heard the policy wonks, I’ve read the Op-Eds, and I’ve and stared at the numbers. They are important, but they don’t get at my core like these moments do. Whether it’s receiving a life-altering diagnosis or a delayed diagnosis, having to choose between personal belief systems and those of the medical establishment, or being privy to the insider survival tricks and processes of cancer treatment, the personal insights these writers provide do much to illustrate where we are—and more importantly, where we have to go.

Some essays speak more directly to the question of “Are we feeling better yet?” than others, and personally those are the ones I enjoyed the most. I started the book wondering if it was merely a foregone conclusion that we can’t really be feeling all that better yet; after all, if the system was working well we wouldn’t need analysis and Op-Eds and consensus talks. But I finished it feeling encouraged. These stories aren’t always pleasant or easy to read, and that’s exactly why we need them. We can learn from them and draw from them as empowered patients and advocates…and that’s certainly a step in the right direction.

Disease Prevention and the 4th Summit Conversation

Posted on May 6, 2009 by ledwards

Since I spent yesterday talking about health insurance, it seems fitting to switch gears to another health reform discussion: the fourth America’s Agenda Health Care Summit Conversation, happening today at 11am PST at the University of California San Francisco.

I’ve mentioned these Summit Conversations before, and I do so again because I find the idea of consensus in health care reform both utterly essential and hard to envision. Yet it isn’t as hard to achieve as we used to believe, or perhaps as past attempts at health reform would have us believe. After all, the diverse group of speakers who come together for these talks, from labor, government, health policy, pharmaceutical, and other stakeholders, prove that there already is consensus: all sides agree we need to reform health care, and now is the time. Talks like these are a way to start hashing out how exactly that reform should happen.

As a patient with multiple chronic illnesses, I’m always particularly interested in how these stakeholders approach disease prevention. Considering that 75 percent of health care spending goes to treating patients with chronic disease, switching from a system that still favors treating acute health crises over prevention and wellness—a “sick” system, rather than a “health” system, as some Summit leaders have said—is critical.

And of course, as a rare disease patient, I’d like to see this notion of prevention now to control costs and improve quality of life later include covering the appropriate treatments we need to prevent disease progression, a distinction that matters to millions of people who live with conditions that are not as heavily influenced by lifestyle and behavioral changes.

To see what some Summit speakers have to say about disease prevention, check out the video below, and browse other YouTube videos on topics covered in these talks.

Talking Health Insurance

Posted on May 5, 2009 by ledwards

So a few days ago I watched the Talking Health webcast on health insurance, presented by the Association of Health Care Journlists, The Commonwealth Fund, and the CUNY Graduate School of Journalism.

I listened both as a journalist interested in how to cover this controversial issue, as well as patient with an obvious vested interested in health insurance reform, and the discussion did not disappoint on either count.

For the purpose of this post, I’ve decided to highlight some of the points/questions I think matter most to readers and patients with chronic illness—after all, a key to managing chronic diseases and preventing disease progression is having health insurance that covers medications and appropriate treatment therapies. And, as the NYT’s Reed Abelson, one of the four panelists, pointed out in talking about stakeholders in this debate, patients are the most obvious source but are not well represented.

Do we really know what the difference between public and private insurance is? While some people do, and they usually equate private with better care when they do, many consumers aren’t sure what the public option really entails. According to panelist Cathy Schoen, senior VP at The Commonwealth Fund, context is important here. She says the type of plan usually mentioned in national reform would offer for the first time to people under 65 a plan that is similar to Medicare, one that could compete with private care. The goal of this type of plan is to provide better access and control costs, and consumers would have the choice to keep their existing (private) insurance or choose this new public option. The public option would be standardized across the country and wouldn’t change much over time.

Bruce Bullen, COO of Harvard Pilgrim, a nonprofit managed health care organization in New England, points out some of the pluses and minuses with public vs private insurance: For example, private insurance companies focus on customer service, network building with doctors, and are inherently local/regional, while public ones are more standardized, easily understood, more regulated and perceived to be more equitable.

Other benefits and drawbacks we should consider? The public plan would offer lower premiums, which is attractive to consumers. At the end of the day, we need to control soaring health care costs; advocates of the public plan point to its purchasing power as an advantage, since it would be purchasing for such a large population. Its economies of scale and lack of a need to market itself are also positives. Since healthier competition usually means cost would come down, the public plan could potentially be cheaper. As we know, private sector rates are higher ($12,600 is the avg family premium), but Bullen contends that well-organized plans like HPHC have such mechanisms where they can be quite competitive with public rates.

But is it possible for private plans to compete with public options? At 20-25 percent cheaper than private plans, Bullen says probably not, pointing out that these savings do not mean the public plan would control health care costs. If we’re making the comparison to a Medicare-type system for people under 65, consider that providers often can’t live on what Medicare pays so they move to private insurers for competitive rates. The cost and quality problems that are so widespread now would continue. Also, consider if providers are asked to sign on for less, would they? Or would the government mandate participation?

Whether through a public plan or a private one, Cathy Schoen asserts that we need to be paying for care differently. To do this, we should harness the technology we have but do so with clear outcomes in mind and in the right circumstances. Appropriate technology requires more incentives, which we don’t have right now. In essence, we need to ask: Is it better, and do we have to pay as much for it?

More thoughts on public plans:The term public plan means different things to different people. Some key variations within that term include a federally sponsored new plan to market or a plan that piggybacks with Medicare. It’s the sponsorship that is critical. Medicare uses private claims payers and pools risk, and one of the biggest fears and strengths of the public plan is that it pools risks.

What can government do if doctors refuse to treat people with the public option? Cathy Schoen agrees this is a critical issue, especially since it’s known that Medicare pays far too little for primary care. The public plan would have to come in with competitive rates and if everyone was insured rates between the two wouldn’t be as different because right now we’re already paying for those who don’t have care at all.

Would the public plan become dumping ground for sickest people? Schoen says it is a risk in a reformed insurance market where no one could be turned away or told they are too sick. Things like age variation where a 50-year-old could say “don’t ask me about health status just sign me up” would help combat this, but we still have to worry about risk selection; as soon as you have competing plans, no matter the name of them, this is still a concern. The way to address it is by rewarding plans.

How will public plans affect the innovation US is known for? According to Bullen, it will negatively impact innovation. One of hallmarks of private care is responding to consumer needs and giving answers that work. That’s a big tradeoff—public plans have other strengths, like standardization and equity.

Anyway, these are just some summarized snippets I felt brought up compelling points on both sides. While it’s a huge issue and has everyone talking, there are so many details, variables, and benefits/drawbacks involved in any type of reform that it’s helpful to hear some of them explained in accessible terms. The terms “public option” or “universal health care” spark so many competing emotions and definitions, from some people imagining hybrid plan like we have here in Massachusetts to conjuring up a single-payer system more comparable to Canada or the UK. For what it’s worth, I found the discussion of a public plan similar to Medicare but for younger people a helpful way to frame the inevitable comparisons between private and public insurance plans.

(As an aside, the second segment with the LAT’s Noem Levy and Reed Abelson was great, so if you’re a writer wondering how to find sources for this and what other questions to consider, definitely check it out.)

Do You Have a Job? (Or, The Truth About Self-Employment)

Posted on April 30, 2009 by ledwards

“Are you an epidemiologist?” the man in the seat next to me asked, gesturing towards the 200-page deep stack of journal articles I’d been attempting to annotate for most of our flight.

“No, but it would sure make this easier if I were. I’m a writer,” I told him. I noticed he was reading a book about epidemics, and for the last twenty minutes of the flight, we had a great discussion about disease, drugs, and the social influences on the two.

Turns out, he works for a tiny pharmaceutical company where the handful of employees work mainly from home. We left diseases and drugs aside to discuss working from home—or, more accurately, the misconceptions about it and the hidden benefits of it. I work from home part of the time, and I was traveling to speak at a symposium about young adults with chronic illness in the workforce, so this was definitely up my alley.

I’ve been told I’ve been a bit feisty lately, and this subject definitely gets me animated. Despite how many people telecommute or are self-employed, I still feel like sometimes there’s this attitude that working from home is somehow easier, less demanding, or less real “work.” My fellow passenger has noticed the same vibe.

Um, no. It’s different, but not easier. This isn’t an illness-specific post; so many writers, editors, artists, designers, consultants, sales people, etc work from home or are self-employed, and they know it’s just as draining as the 9-5 grind, but in its own ways.

A few days a week I do not have to deal with commuting, and I realize how fortunate that makes me. But I’m also at my computer, chest PT completed and coffee consumed, and at work by 7:30 at the latest every day, so I put that commuting time to good use. While the isolation of working from home can be an issue, my airplane companion pointed out a real bonus of that isolation: he doesn’t waste time being distracted by office chatter, people popping in to ask him questions or procrastinate; he just gets his work done.

“I get more done working straight through from early morning to lunchtime than most people do in a whole workday,” he said.

I can relate. My office is my laptop, and while I break for lunch and then again at dinnertime to go to the gym, I come home and usually get back to work, sometimes not stopping till 11pm. This is not a complaint, and it’s partially just my personality to be like that so I have no one to blame for the lack of boundaries but myself. I’ve started trying to leave my laptop up in my office after 8pm so I’m not tempted to work, and the physical boundary of the staircase is helpful.

I don’t have to slog through snow and rain when I leave the office at night (well, I do during the semester, so I know it stinks), but the flipside to that is that I don’t ever “leave work at the office.” (Does anyone ever, really? Even if it’s just thinking about it?) Any writer or teacher can relate: weekends, evenings, and holidays equal copious essay reading and grading and client deadlines and research and e-mail requests. I’m being honest when I say the last time I didn’t do any type of work on a weekend or vacation was my honeymoon almost four years ago. Anyone in any kind of freelance position knows that when you’re not pitching, pitching, pitching now, you’re not getting paid later. It’s exhilarating and a good motivator, certainly, but only if your risk tolerance can take it. It’s not for everyone.

Again, this is by no means a complaint. I’ve made these choices in my life and am responsible for the outcomes and I love writing books, teaching college students, and freelancing. I love that I have the flexibility to go to the doctors when I need to and make up the work, and that I can avoid public places where I could catch things during bad months. I also know those of you who are not self-employed can say the same thing about working weekends and vacations—most people I know log incredibly long hours and they don’t have the choice to do it from their homes like I do.

Really, I’m just saying that while there are many, many positives to working from home, like setting our own schedules or wearing comfortable clothes, that doesn’t mean it’s some kind of cakewalk where we’re merely lounging in pajamas and watching television, or that our workday hours aren’t as valuable (or as stressful) as other people’s.

Can you tell that I’ve heard comments like that and that I get lots and lots of interruptions during the day because I’m “not at work?” Does anyone else have this problem? I think part of the reason I struggle with work-life balance and boundaries on my own is because I have to work so hard to combat the assumption I do not have a job because I am not in an office environment. Seriously, it’s been a few years of doing the teaching and writing thing, and I have someone who still asks me if I have a job…well, my college students don’t teach themselves and books and articles don’t write themselves, and so yes, I’d say I have a job. And I have two offices: one on campus, one in my house. Neither is more “real” than the other.

(And as an aside, the days where self-employed people who are also chronically ill actually are in their pajamas? No cakewalk either, despite how good I’ve gotten at typing while hooked up to my nebulizer.)

I’ve done both, and there are definitely things I miss about the traditional workplace: the interaction with co-workers, the stable paycheck, the benefits, the ability to take a real sick day. I know, I know, there are also many downsides to 9-5: cranky bosses, gossipy co-workers, office politics, long commutes, unwanted travel, unfulfilling projects, etc. I guess that’s my whole point: neither option is without its benefits as well as drawbacks. Let’s make sure we respect the work that is done on both sides.

My mother always said she could tell I was feeling better when I got feisty (really, a tactful word for ornery when she used it) so I guess this is a good sign.

Oh, and the presentations about employment were a blast. Once I’m up there I have a lot of fun. The icing on the cake? Having dinner with the equally fabulous Paula Kamen and Jenni Prokopy, where we ate delicious GF food and talked about one of my favorites subjects: narrative medicine.…and of the work that is writing, of course.

Laurie Edwards

Writer, Teacher, Advocate