Category Archives: Rare Diseases

Dissecting a Diagnosis

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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?

The Reality of Rare Diseases: The Official Rare Disease Day Post

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I have a rare or “orphan” disease, one that affects fewer than 200,000 patients. If you’re new, mine is a genetic respiratory condition called primary ciliary dyskinesia, or PCD. Cilia, the tiny structures that line the respiratory tract and clear out debris, do not work properly, leading to infections, decreased oxygenation, and long-term lung damage. There are only 1,000 documented cases of PCD but up to 25,00 Americans are thought to have it.

There are more than 700,000 rare diseases in the United States, and as I mentioned before, the 25 million Americans who live with them largely fly under the radar—disease-specific foundations work tirelessly to raise money and awareness, but there are few trendy wristbands, colored ribbons, or designated disease awareness months in our world.

The built-in community other conditions sometimes have is harder to come by; I’ve met exactly one patient with PCD in real life and though we said hello we could not stand too close and really speak to each other because of the communicable diseases we could spread to one another.

That’s why Rare Disease Day, sponsored here in the US by NORD, a nonprofit collaborative of voluntary health organizations that works for the prevention, treatment and cure of rare diseases through advocacy, research and education, is so important. I can vouch for how significant a role research has in the diagnostic trajectory of a rare disease patient—only with advanced technology could my new specialist hazard a look at the cilia causing so many problems and start treating me appropriately.

So the goal of this global day of recognition is just that—to raise awareness of rare diseases as a public health issue. For so many reasons it is a public health issue—we need to prevent disease progression, find more effective treatments, and keep rare disease patients as productive and healthy as possible.

But awareness goes much deeper than that.

For many patients, the first hurdle is awareness within the medical community itself. Like many PCD patients, it took years (or, um, my entire lifetime) for me to get a correct diagnosis, years where irreversible damage to my lungs occurred while I labored under treatments for the wrong condition. My father, who has a rare connective tissue disease, was misdiagnosed for over seven years. In the end, it caused him a kidney, multiple broken bones, and a correctly functioning pancreas.

Collateral damage, I suppose.

With more knowledge and technology at our disposal, hopefully rare disease patients across the disease spectrum will get more timely diagnoses and can start available treatment sooner.

Diagnosis isn’t the only hurdle—consider a patient with Ehlers-Danlos Syndrome I profiled in Life Disrupted, who was labeled a drug seeker by nurses in her ER because of her frequent (necessary) trips for dislocations. When I roll into the emergency room in respiratory distress and have to both spell and define PCD to the triage nurses and residents, though, I know I’m in trouble. It’s understandable; specialists are the ones who see these diseases regularly, not emergency room residents, but with communication and preparation—I bring a printout of my medical history and medications with me—it is a situation that is improving.

And then, of course, there is the public misconception. Even when I am infection-free I have a consistent cough, a loud, abrasive cough, and an audible wheeze. “Are you sick?” strangers will ask, not-so-discreetly stepping away from me. “No, I’m just me being me,” is my default retort. Convincing the person standing next to me on the train that I am not contagious is not easy, but I expect the whispers and queries in public, just like I expect the blank stares of incomprehension. If I say I have a rare disease or I have PCD, I just get a bigger blank stare.

Clearly everyone living with a chronic condition has individual challenges and struggles. Having something that is really rare just adds another layer of complication—and sometimes, that complication can have serious consequences. I think we’ve all heard enough “You have what?” and “I’ve never heard of that!” to last a lifetime.

With advanced technology and better diagnostic tools, the rare disease population is growing. Patients with serious childhood illnesses are living longer into adulthood and having their own children. Others are finally getting the right diagnoses and enrolling in clinical trials or connecting with other patients via online groups and social-networking sites. There is momentum, and with momentum, there is increased understanding.

Let’s hope so, anyway.

In Preparation: Rare Disease Day

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Those of us who have a rare disease often fly under the radar—there are few trendy wristbands, colored ribbons, or designated awareness months for our diseases. This is why I am excited that February 28, 2009 will be the second annual worldwide Rare Disease Day.

Sponsored by the National Organization for Rare Disorders (NORD) in the United States and more than 200 other partners, the purpose of Rare Disease Day is to:

“Focus attention on rare diseases, the challenges encountered by those affected, and the importance of research to develop diagnostics and treatments.”

(In short, to raise awareness of rare diseases as a public health issue.)

I often talk about how the universals of living with chronic illness outweigh the differences in diagnoses and symptoms, and I truly believe that. Yet within that umbrella of chronic illness, many of us living with rare diseases face our own unique set of circumstances.

As I prepare an official post for Rare Disease Day later this week, please let me know if you live with a rare disease and have any thoughts or comments you’d like me to include.

A few other odds and ends:

I was captivated by the NYT Sunday magazine article “What’s Wrong With Summer Stiers?” that focused on undiagnosed illness—this isn’t too surprising given what I consider the close connection between rare diseases and undiagnosed diseases. Be sure to click on over.

Speaking of links, I couldn’t resist the stream of URLs and commentary any longer—that’s right, I’m now officially on Twitter (achronicdose) if you’d like to follow me there.

Politics, Sports…and Chronic Illness?

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I try to stay on point in my writing on this blog, exploring universal issues of living with chronic illness and discussing new research, policy, or insights from other writers and bloggers. But sometimes, personal interests and public issues intersect, and there’s been a lot of that happening lately.

I don’t usually stray into political leanings, but when it’s an election year and presidential health care policies have the potential to impact so many lives, how can I not write about the importance of the female vote when it comes to health care?

Similarly, I don’t usually write about sports. Now, I’m by no means an athlete—remember, I’ve broken fingers typing before, so you can imagine what an awesome combination me and a basketball court made—but I grew up with two older brothers so sports have been part of my life for as long as I can remember. I mean, I went to hockey, baseball, and football games before I was old enough for nursery school.

Plus, when you live in Boston, you can’t escape fan fever. Clearly Sunday’s game was a tough one for Red Sox nation, (though the Monday night football with the Patriots cheered us up somewhat) and the series with the Tampa Bay Rays was an emotional rollercoaster.

Why bring up a painful loss? Because while rooting for my team, I had the chance to watch Rocco Baldelli hit for the Rays. This spring, after a lot of tests and some tough symptoms to piece together, Baldelli was diagnosed with mitochondrial disease, which makes it harder for his cells to recover from even minimal exertion and can cause excessive fatigue.

Since Life Disrupted published this summer, I’ve heard from many patients and learned about many conditions I didn’t know much about, including mitochondrial disease. Despite our vast differences in symptoms and body systems affected, I could relate to a lot of what I learned, especially regarding the difficulty in diagnosing it and the fact that since it often manifests in children, it’s even harder to identify in adults.

(I had immediate flashbacks to doing homework for grad school while waiting in my pediatric specialist’s office, flanked by toddlers with croupy coughs and stacks of Highlights magazine.)

So at first, I was interested to see Baldelli because anytime a rare disease can get national exposure and awareness like that, it’s wonderful—good for general knowledge and education and hopefully, it’s also good for fundraising and research goals too.

But on a deeper level, watching Rocco’s at-bats reminded me of so many things I normally talk about on this blog: adjusting to new symptoms, negotiating setbacks, and balancing professional ambition with personal health needs. So many of us have had to be creative about our employment situation, from finding ways to work from home to switching jobs so we’re in a more flexible corporate culture. We seek ways to be successful and to contribute even when our bodies don’t work the way we want or need them to work.

Now think about Rocco’s situation, and just how much success and positive contribution depends on athleticism and peak physical condition. And think about trying to compete at his level when his body can’t do the things it used to do, the things he needs it to do. Talk about an adjustment.

In what I am sure will be an ongoing process with many revisions, Baldelli and the Rays are figuring out how to keep him in the game without exacerbating his condition. He doesn’t play in every game, and the time to rest and recover appears to be working since he had no problem knocking out some hits in a clutch position.

I’m glad to see that his diagnosis didn’t automatically mean retirement for Baldelli, and glad to see the Rays are working with him. After all, if there’s room for chronic illness in professional baseball, there’s some hope for everyone else trying to balance work and illness too.

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In other news, a new edition of Grand Rounds is up at Pallimed—check it out!

Language and the Patient Experience: The Follow Up

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I was curious to see what readers had to say when I first explored the difference between chronic illness and chronic disease and other questions of semantics. As I’d hoped, your responses gave me a lot to think about.

I started off with the basic distinction that the term “disease” belongs to doctors and researchers while illness refers to the actual living experience of patients—that which can be tested, biopsied, or otherwise pathologized versus that which we feel. Several people added their own interpretations of the semantic difference. There are distinctions between disease and condition, with some feeling that “disease” is on the more serious end of the spectrum, while a “condition” may be life-altering but is not considered as serious. I find this self-identified spectrum of severity compelling.

I’d never thought about this until now, but while I consistently use the term “chronic illness” to describe the universal challenges of living with medical problems that are treatable but not curable, when someone asks me to describe PCD, I start off with something along the lines of, “It’s a rare genetic respiratory disease.” Perhaps the difference is that in explaining living with chronic illness I am focusing on how it impacts the personal and public roles in my life, but when asked to explicitly describe some of these illnesses, I revert back to the most fundamental understanding of it, a genetic, biological meaning of disease.

What I find interesting is the relationship between diagnosis and claiming the particular language of the patient experience. As I discussed earlier, diagnosis is incredibly valuable for many reasons. It establishes membership in a particular community. It establishes certain treatment plans and regimens. It can limit the isolating nature of living with illness. These are all good things.

As a counterpoint, this New York Times article on fibromyalgia that kicked up a lot of tension last spring poses a downside to this process of naming and claiming: some feel that giving patients a label causes them to perseverate over their symptoms and catalog aches and pains that “normal” people tolerate. This view is an unfortunate downside to the labeling process that has made such a difference for many.

It’s a charge that wouldn’t be levied to such a degree against patients whose medical problems are easily identified through blood tests or biopsies, and perhaps it speaks back to the fundamental differences between the science of medicine and the individual illness experience of the patient. Just because the biological source is not easily explained, does that mean the symptoms are not there?

Obviously not. As a personal example, I talked in Life Disrupted about how the labels of PCD and bronchiectasis did not change the experience and the physical nature of my symptoms. That is, my wheezing, coughing, and thick, suffocating mucus were not any more or less “real” to me when I switched from misdiagnosed patient to PCD and bronch patient—they were just more understood.

This leads me to wonder how much the social constructs of illness (and, by extension, wellness) influence this process of diagnosis and identification. As one person commented, her doctor cares less about the exact diagnosis of her pain if it isn’t going to change the treatment plan. This makes sense to me—if it isn’t going to change care and treatment, is getting that one label more important than maintaining an improved quality of life? I can’t help but think of Dr. Pauline Chen’s NYT column on the tyranny of diagnosis.

But to the rest of the world, I think names and labels matter a lot. What I’ve heard from a lot of patients is that people legitimize or at least try to sympathize more with chronically ill people when they are offered a concrete name for the illness. Is it more socially acceptable, then, to have arthritis, which shows up in certain blood tests and markers and is thus more understood, than to have fibromyalgia, which can’t be reduced down to a simple diagnostic blood test?

Of course this is just one example, but I guess what I’m wondering is how much societal expectations and assumptions influence the importance of the language involved in the patient experience? Let me know what you think!

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

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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.

PCD Foundation is “Charity of the Day” Today

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As so many of you know, fundraising, awareness, and research are critical for improving patient outcomes and quality of life. For rare diseases that don’t get the face time and air time more common disease receive, this is especially true, and disease organizations are often our lifeline. So, I was pleased to get an e-mail last night informing me that GoodSearch named the PCD Foundation the “Charity of the Day” for today, Wednesday, June 25, 2008. Rather than forward the e-mail, I’ve included text from the PCDF press release below:

“GoodSearch.com and GoodShop.com are convenient ways for the PCD community to participate in fundraising for the foundation with no direct out-of-pocket expense. Goodsearch.com is a search engine (powered by Yahoo.com) that pays a penny per click to the designated charity. Goodshop.com is an online shopping service that can be accessed on the GoodSearch.com homepage that allows buyers to purchase from a wide selection of popular vendors with a portion of the sale going to the PCDF. The buyer does not pay any more than if they were to shop directly from the merchant.* Together, GoodSearch.com and GoodShop.com are powerful and convenient revenue-generating options for non-profits of all size. For small non-profits, like the PCDF, they are an essential part of our revenue stream…

*You can shop at hundreds of great stores. Amazon, Best Buy, Macys and many others have teamed up with GoodShop and every time you place an order, you’ll be supporting the PCDF!”

Here’s an idea–if you’re heading to Amazon to buy Life Disrupted, do it today through GoodSearch.com and help a wonderful cause. As a PCD patient myself, I can’t say enough how important the community-building, education, and research efforts the PCDF spearheads are.

(And no, I didn’t plan that shameless plug. The timing was just that good!)

PS–Tonight at 8:30 pm EST I’ll be a guest on syndicated health columnist Judy Foreman’s Health Now, an Internet radio show on HealthTalk . If you’re free, tune in and listen, and click on the link to register and ask a question.

What’s In a Treatment…

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Earlier this week, I was fortunate to attend an event at Fenway Park (can’t ask for a better setting than that!) benefiting and celebrating the neuroscience department at BIDMC. On so many levels, it was a wonderful evening. I got to chat with one of my favorite medbloggers and BIDMC CEO, I met a fascinating and highly acclaimed memoirist, and spoke with all kinds of people doing creative things in health care.

The most exhilarating part of the evening was learning about the innovative research and treatments these doctors are working on, and the atmosphere of collaboration and care for the patient that guides it. Whether it was discussing yoga and dance therapy for Parkinson’s patients, hearing patients talk about stroke rehabilitation, or learning how noninvasive techniques can help patients with a variety of conditions, it was impossible not to feel the energy and potential gathered in that room.

You don’t need to be a neurology patient or even the friend or family member of one to appreciate these types of advancements. In fact, the idea that if given the appropriate time, resources, and environment researchers can get closer to developing more refined, targeted, and effective innovations for diseases is one that stretches across many disciplines.

By pure coincidence, I also stumbled across this Slate article, “Old Drugs, New Tricks” this week. Writer Darshak Sanghavi points out that in some of the major fields of medicine—like pediatric oncology, or cardiovascular disease—some of the most significant strides in increasing patient survival rates came from refining existing older drug therapies, rather than aggressively hyped new medications. Of course he points out cases where brand new drugs have made enormous (and unexpected) gains for patients, but his central point is a compelling one, and his thoughts about why some specialties are better equipped for the long-term, rigorous studies that make such refinement possible make a lot of sense.

As someone with multiple conditions of varying degrees of severity and treatment options, I find myself in an interesting position within this debate. When I was diagnosed with PCD and bronchiectasis a few years ago, my treatment regimen changed in many ways. While I had pretty much lived on steroids and all kinds of inhalers for most of my life (and spending weeks each year in the hospital and getting worse with each trip shows how well that worked out for me), I switched over to a system of rotating strong antibiotics. I still use inhalers and my nebulizer, but the steroids are no longer the first line of treatment. I also started daily chest physiotherapy, and that has made such a difference in my quality of life.

I mention all this because for me, some of the biggest improvements in my quality of life, and even my survival, are tried and true therapies. (This isn’t to say that some of my antibiotics aren’t newer generation, or that the vest I use when I can’t get chest PT isn’t a more modern version of the very physical and visceral pounding I get from my therapist, obviously.)

These things were already in existence and working well in some populations—but if it weren’t for advanced technology and research, I wouldn’t have known to use them because I wouldn’t have been able to get the correct diagnosis for such a rare condition. Without research and innovation, I’d still be chafing under the wrong diagnosis, living between hospitalizations, and causing yet more irreversible damage to my lungs.

(You can probably see now why the research I learned about the other night was so exhilarating, yes? Hope is an equal-opportunity phenomenon.)

So while my daily life involves many old-school techniques, my improved quality of life and my existence as a PCD patient speaks very much to new-school capabilities. It’s a collaboration between what we already know works for similar patients and what we’re beginning to understand about how specific cells and structures function—and based on what I learned the other night, it’s a collaboration that also stretches across all sorts of specialties and boundaries.

Clearly I can’t say if so many of us will ever have a cure for what ails us, but the more innovation and collaboration we have, the more we can refine treatments and understand the origins of our disease and target specific pathways, connections, and cells, the better. As the Slate article points out, it must be done in the appropriate way, and as recent events have shown me, when this happens, it’s a great thing.

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.

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.