Author Archives: ledwards

Taking a Look at Healthcare Policy: The McCain Campaign

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In the midst of what has been quite a rollercoaster of a week, I was able to participate in a press call with the McCain campaign that focused on his healthcare proposals. Senior policy advisor Doug Holtz-Eakin and former Hewlett-Packard CEO Carly Fiorina answered questions from journalists and bloggers about his policies, which provide an interesting alternative to the talk of universal healthcare dominating the Democratic contest.

There are plenty of economic and political analyses of the McCain healthcare platform out there, so what I’m attempting to do is look at the key policies of the candidates that resonate most with my perspective: someone with multiple chronic conditions whose problem isn’t lack of insurance per se, but lack of confidence in my insurance and lack of the comprehensive coverage I used to have.

Overall, I like a lot of the central themes of the McCain campaign: we have great technology and innovation so the problem isn’t as much about quality as it is affordability of that care; patients should have more control over their own care and their choice in doctors; healthcare should focus on treatments and outcomes, not tests and procedures; and lastly, that prevention is key (no surprise there).

I can’t argue with any of those points. As always, I’m interested in the “theory into practice” aspect of things. (Who knew the basic distinction so critical in my teaching composition seminar would turn up so often in my health blogging?)

Specifically, the idea of portable health insurance that employees can take from job to job is quite appealing. Health insurance is an inordinately large deal-breaker in potential job opportunities in our world. Not being tied to a job for its health insurance or tied to sub-par health insurance because of the job that comes with it is certainly a refreshing option.

The ability to purchase health insurance outside of employer-sponsored plans through a $5000 tax credit (that this free market competition will drive down costs is a driving force of this policy) also sounds promising in theory. In practice, I worry where this leaves someone with pre-existing serious medical conditions. If I’m to go out into the national market and try to buy a plan, will the “safety net” in place for patients like me actually catch me?

Other aspects of his platform I gravitated to include publishing doctor fees and patient ratings on Internet to weed out the worst providers; encouraging telemedicine; and providing incentives for healthy lifestyle choices, though in reality I’m curious as to how this would actually play out. His team was clear that these would be incentives, not mandates, but in the push for outcome-based medicine, would that line get blurry?

One thing I’d like to know more about is how his push for pharmaceutical reimportation would impact research and innovation for orphan diseases.

In sum, McCain’s policies are an interesting alternative to universal health care—about as different as you could get—and give me a lot to think about. In coming weeks, stay tuned for a closer look at the Democrats’ policies, too—we’re equal opportunity here at A Chronic Dose when it comes to evaluating healthcare platforms. In the interim, for a nonpartisan look at the different candidates’ healthcare policies, check out the Partnership to Fight Chronic Diesase.

Library Journal and Grand Rounds…

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So I’m jumping into the political fray courtesy of an interesting press call today but while that post is percolating, here are a couple links hot off the presses.

Library Journal gave Life Disrupted a starred review in their May 1 issue. Check out it online here!

Doc Gurley hosts a knock-down, drag-out edition of Grand Rounds this week–check out the multitude of heavy-hitting posts.

Incidental Economics of Illness

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In a freakish turn of events, I dined out recently with two friends and I was the healthy one. (Well, okay, the visibly healthy one, if you must).

My two friends are preternaturally athletic, the type who run marathons and triathlons, who scale mountains on other continents, and generally amaze me with their natural ability and iron work ethic. Yet that night, they were wearing identical walking boots, having each suffered metatarsal injuries of some sort. One was even on crutches.

And there I was, not a sprained ankle, torn ligament, or broken bone to be had. Finally, I got to hold doors open and offer to carry bags for someone else.

Weird.

As our little trio limped down the city street, one my friends commented on the hassle it was being somewhat incapacitated.

“It’s really expensive,” she added, commenting on the number of cabs she’d had to take lately when the walk to public transportation would have been too much for her injured foot.

I nodded vigorously.

She’s right. Now, I realize just how far down on the priorities list this topic is. I know how expensive chronic disease is in terms of productivity and lost wages. I’ve seen Sicko; I know people with health insurance lose their homes and livelihoods, and even their lives. I know many other people do not have insurance, so a broken bone or X-ray or MRI can be a catastrophic cost.

I’m certainly not arguing any of that. But that topic is much larger, more unwieldy and complicated and frustrating, than what I am attempting to focus on here. So with that caveat in mind, shall we?

When you add up all the little expenses that come with being sick, those incidental little things that aren’t neatly categorized like co-pays and deductibles are, it really is costly.

Like my friend, I’ve definitely paid for many, many cabs when I’ve been too broken/adrenally-depleted/infection-ridden or otherwise worn out to take public transportation. I’ve paid tons of exorbitant parking garage fees because I couldn’t walk to a place or knew by the end of the event or appointment I wouldn’t be up to commuting.

Don’t even get me started on the number of non-refundable plane, train, theatre, and concert tickets we’ve lost money on when my health status changed quite rapidly and we had to cancel our plans. (Yes, sometimes people are understanding and work something out with us, but that is not the norm.) And of course there are the projects and jobs I’ve turned down because I’ve gotten too sick or landed in the hospital, but that’s another issue.

Despite our insistence on store brands and the fact we only buy enough for the meals we eat in one week, grocery shopping is more expensive because, frankly, most of the inexpensive food I cannot eat. Now, I do love me fresh produce, and all-natural, gluten-free grains, soymilk, and the $2 GF energy bars I grab to keep in my briefcase as a quick non-perishable snack, but they are by no means inexpensive. I’m sure all of you with various GI issues and dietary restrictions can relate.

Even dining out costs more than it might for the average person at the average restaurant because very often, the only “safe” menu choices beyond a small garden salad are the grilled fish entrée or the steak. No cheap middle of the road burger or sandwich or affordable domestic beer.

Anyway, I could keep listing all the ways illness sucks money out of my pocket, but I realize to even notice these incidentals is a luxury. It means the truly costly parts of life with chronic disease are under control.

It could be a lot worse.

(But I know you’re nodding your head and mentally cataloging your own incidentals list, too. It’s okay.)

It’s Official!

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Amy Tenderich of DiabetesMine.com has posted the first official review of Life Disrupted. Check it out here.

While you’re clicking away, be sure to read this week’s Grand Rounds, hosted by Dr. Val Jones at Revolution Health. As always, it’s a compilation of the best medical writing out there, and this week’s entries are certainly compelling!

Stay tuned for a scintillating look at the incidental economics of illness…

Summer Camp, Sick Style

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This won’t come as a shock to anyone who has read this blog before, but I was never a prime candidate for summer camp. (Or any sports involving physical contact, catching round objects, copious running, or inherent dexterity. In addition to a lack of natural talent, I broke too easily and coughed too much.)

In fact, I didn’t even like hearing those two words, “summer camp.” I watched the yellow buses wind through our neighborhood every morning, toting eager campers with lunch bags and bottles of sunscreen, and all I could do was thank God I wasn’t on such a bus.

My one and only bout with summer camp can be summed up this way: five-year-old me got released from the hospital after spending several weeks in an isolation room. A staph infection spread from my ears and was traveling towards my brain, so they shaved part of my head, cut it open, and drained it out. Good times. Lucky for me, I was released just in time to start Summer Session 2 at the day camp near my house. As it turns out, girls with partially shaved heads, IV bruises, and an assortment of meds and inhalers who aren’t allowed to go swimming or run around aren’t exactly popular.

(I should note that this wasn’t a high tech camp—swimming in the lake and running around were pretty much the only things you could do.)

Seriously, can I even blame the other kids—who’d been swimming and running with each other since the early days of Summer Session 1—for avoiding me altogether?

I lasted about two days.

I think the point in sending me was to re-acclimate me into the world of “normal” kids after so many weeks in isolation, but it just didn’t work. I was plenty social, but day camp took every weakness and insecurity I had and magnified them. My mother promised no more day camp, ever, and I spent most summer days playing with my cousins or friends on the beach or reading. When I was well enough to swim, I wore ear plugs and a nose clip and no one cared because they were used to it—or had been warned by their mothers not to comment on it.

To this day the thought of summer camp makes me a bit uncomfortable. I see plenty of kids who love it, and I am amazed by the variety—drama camp, dance camp, techie camp, music camp. Perhaps these specialized programs eliminate that whole notion of exposing vulnerabilities and sticking out.

“If we have kids, they’re only going to camp if they really want it. Like if they look it up and beg us and it’s totally their thing, ” I said to my husband recently, poring over the advertising supplement for summer camps in a local magazine. He was never a day camper sort either, so we were in agreement: if they want it, great. If not, we won’t force it.

Anyway, the whole point of this trip down memory lane is the fact that in addition to camps for sports and drama and academic enrichment and all of those things, there is a growing number of camps for kids with chronic illnesses. From well known conditions like diabetes and asthma to camps for kids with less common diseases like neurofibromatosis (and you know what a soft spot I have for the rare disease patients), there’s an emerging variety in options. And according to this article in the Boston Globe, these camps provide more than just a rite of passage:

“Now fledgling research suggests such special camps may offer more than a rite of passage these children otherwise would miss: They just might have a lasting therapeutic value.”

In addition to learning more about their conditions in hands-on and creative ways, children who may otherwise feel ostracized get to meet others just like them, which can be an incredibly valuable “normalizing” experience, one that can also boost confidence and self-esteem.

Who knows. Maybe if I re-wound the clock about twenty-five years and found a camp for kids with dodgy lungs, runny ears, deficient immune systems, and partially shaved heads, I’d have embraced the day camp experience with less terror. Maybe I would have even liked it.

Or maybe I would have still preferred looking for starfish at the beach and checking books out of the library. (Likely.)

But with so many specialty camps out there for aspiring singers, soccer players, and science stars, it’s nice to know that this generation of chronically ill summer campers have so many more options available to them, too.

New Look, New Links, New Book Info

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Okay, so a real post—you know, cohesive thoughts, even the occasional insight—is coming shortly, but I did want to take a moment to point out some exciting developments:

First of all, you’ve probably noticed a completely revamped and streamlined site design, one that will hopefully make navigating A Chronic Dose easier and more efficient. Plus, it looks pretty.

A more important addition is the cover image of my book, Life Disrupted: Getting Real About Chronic Illness, which now has a permanent place on the sidebar and is also seen here:

Lastly, you’ll notice that the book is now available for pre-order sales. To order your copy from Amazon, click here now! Go! Place your order! I’ll wait.

And don’t forget you can read the advance quotes right here.

More book news is forthcoming but for now, stay tuned for that real post I promised above. Disastrous summer camp tales? Yeah, I’ve got those….

Universal Health Care and Primary Care Problems

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So we’ve already established that patients like me are pretty much a primary care physician’s nightmare—complicated histories, hordes of specialists, all sorts of medications and symptoms to monitor. As I wrote a few months ago, though, some of those factors are the very reasons people like me need a good PCP, someone who can help coordinate the moving parts of disease management.

(As an aside, I have yet to find a group that is accepting new patients, but I’m going to renew my search now that a tough winter is over.)

Yet effective preventative medicine is the key to minimizing or even eliminating chronic disease, one of the most expensive and pervasive issues in health care. This is a given, and the logical extension of this is the idea that the more access people have to health care coverage, the better the outcome.

But theory and practice aren’t always as close together as we’d like. For example, here in Massachusetts a universal coverage plan was implemented several months ago. While costs have been significantly greater than previously estimated, a more compelling result is the one referred to in this New York Times article. In looking at the growing gap between urban and rural care, the article went on to posit this:

“Now in Massachusetts, in an unintended consequence of universal coverage, the imbalance is being exacerbated by the state’s new law requiring residents to have health insurance…Since last year, when the landmark law took effect, about 340,000 of Massachusetts’ estimated 600,000 uninsured have gained coverage. Many are now searching for doctors and scheduling appointments for long-deferred care.”

Of course, the fact that 340,000 patients are now covered is an encouraging one. But if one of the main goals of health insurance is to promote preventative medicine, how effective can it be if the patients who have lacked primary care medicine are unable to use their new insurance to see a physician? Or must wait months for an appointment?

Factors behind the primary care drought—lower salaries, educational debt, an aging population that demands more care—were already there. Add to that an influx of patients who all need the same resources, and it’s all too easy to see why doctors and patients alike are feeling the crunch:

“It is a fundamental truth — which we are learning the hard way in Massachusetts — that comprehensive health care reform cannot work without appropriate access to primary care physicians and providers,” Dr. Bruce Auerbach, the president-elect of the Massachusetts Medical Society, told Congress in February.”

Some Life Disrupted Literary Love…

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It’s pre-pub time, when advance reader quotes and reviews for Life Disrupted start coming in and all of the sudden, the book that lived in my head and then in my laptop all these months is starting to feel real. To that end, the advance quotes that appear on and in the book are now available right here, so check them out!

I will also place them in a more permanent position on my sidebar. Stay tuned for lots of other good book stuff and links in the pipeline, and I promise the final cover image and pre-order links will be highlighted soon!

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In other literary news, did you know April is National Poetry Month? Clearly you’re aware of how much I support writing as an expressive and valuable resource for patients, so I am happy to pass along that MyMigraineConnection.com is calling for submissions for its 2008 Putting Our Heads Together Poetry contest. If you’re inspired to help spread awareness of migraine disease and chronic headaches, check out the contest details here. The deadline is April 21, so start writing!

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In keeping with the writing theme, check out this week’s Grand Rounds, a compilation of the best writing in the medical blogosphere, hosted this week by Dr. Wes.

What Makes a Meal…

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“Eat food. Not too much. Mostly plants.”

Clearly I’m not the first one to quote the opening lines of Michael Pollan’s In Defense of Food, or to see the logic in his argument that eating food is much different than eating the processed products that line most of the shelves in our grocery stores.

But I probably wouldn’t have been attracted to those lines—I might not have even read the book—if I hadn’t gone through such a major transformation in terms of what I think of as food and how it relates to health.

I thought about all of this when I came across a post from someone on a celiac listserv. The author said he would never go back to eating gluten, celiac disease or no, because his attitude towards food and cooking was so much healthier now.

I couldn’t agree more. I’d always been conscious of eating “healthy”—low-fat versions of everything I could find, heart-smart butter-like spread, even fat-free cheese (which, I admit, is an affront to the institution of cheese and consistently melted into an unappetizing pool of gooey yellow sludge. It was probably a subconscious part of my decision to give up dairy.) I bought pre-packaged, powdered low-calorie soups I added hot water to, convincing myself they made me full.

And then I was diagnosed with celiac disease and processed, pre-packaged foods were the first casualties.

Thank goodness.

I’m a label reader by proclivity as well as necessity, ever on the lookout for hidden sources of gluten in my foods. As such, I can’t help but notice how little time I now spend standing in grocery store aisles, poring over labels—after all, fruit, vegetables, fresh herbs, and meat/fish have pretty short ingredient lists.

Without being conscious of it while it happened, I became one of those people who, with the exception of canned beans and dog food, only shops the perimeter of the grocery store. Buying fresh, whole ingredients isn’t cheap, but since I’m not spending money on fake foods, the bill evens out each week. Now, we cook, rather than re-heat, a distinction I never would have thought about before.

Sure, I miss the sensation of biting into a toasted bagel, and the aroma of pizza baking can get to me. But going gluten-free forced me to look at what I eat, not just how much I eat or how many calories I ingest, and I wouldn’t go back to my outdated notion of “healthy eating” for anything. My life after diagnosis began as an odyssey of food exclusion, but I no longer see it that way.

After all, I take enough medications and put enough foreign chemicals in my body as it is. I certainly don’t need to add anymore into the mix.

Mid-Week Reading: Shared Experiences and Health Social Networking

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It’s that time again! The March Pain-Blog Carnival is now posted at How to Cope with Pain, featuring the month’s best posts about living with chronic pain. New bloggers are always welcome to contribute.

Speaking of sharing insights and experience, I’m sure you’ve come across this New York Times Magazine article called “Practicing Patients.” It discusses PatientsLikeMe, a web community which “seeks to go a mile deeper than health-information sites like WebMD or online support groups like Daily Strength. The members of PatientsLikeMe don’t just share their experiences anecdotally; they quantify them, breaking down their symptoms and treatments into hard data. They note what hurts, where and for how long. They list their drugs and dosages and score how well they alleviate their symptoms. All this gets compiled over time, aggregated and crunched into tidy bar graphs and progress curves by the software behind the site. And it’s all open for comparison and analysis. By telling so much, the members of PatientsLikeMe are creating a rich database of disease treatment and patient experience.”

For patients with diseases like Parkinson’s, MS and AIDS, real-time discussion and analysis of treatment methods, dosages, and relatives success can provide invaluable—and hard to find—information.

This has been a big week in the health social networking world—Healia.com, the health search engine I’ve written about before in conjunction with social networking, just announced the launch of Healia Communities. The site is “a free online health community that enables people to get personal support for their health decisions from peers and experienced health professionals … Healia Communities allows people to share their health knowledge, experiences and favorite resources; provide personal support and connect with people sharing the same health concerns; and get answers to their questions from health experts,” according to the press release.

More than 200 health communities exist right now, and a feature that distinguishes the site from other patient disease sites and groups that connect patients with each other is the additional access to health professionals who can also help answer questions.

What dedicated blog carnivals and online communities like the two mentioned above point to is the ever-increasing influence of technology over the patient experience, a vital exchange of experience and practice with the potential to do much to improve how we manage disease. Check them out and see if they are the right fit for your needs.