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?

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Women and Health Care: Are We Feeling Better Yet?

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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.

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Disease Prevention and the 4th Summit Conversation

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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.

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Talking Health Insurance

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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.)

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

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“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.

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Young Adults, Chronic Illness, and Employment

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Just a few weeks ago, I wrote a post where I confessed that the
smaller daily challenges of being employed with chronic illness were more challenging than normal this year. In Life Disrupted, I devoted several chapters to the larger, macro issues that are part of any discussion of work and chronic illness: disclosure, flexibility, health insurance, compromises, optimal career paths, etc. I also interviewed the incredibly wise Rosalind Joffe about her thoughts for younger employees who have CI.

What the past few months have shown me is that even after the supposed “hard part,” the discussions we have and decisions we make to try and balance our ambitions with our health, still there is a tenuous push and pull between the ideal and reality. It is an evolving process, and while I have worked out a fairly successful balance right now, I know my career will continue to change as my professional and health needs demand. That is what makes it both exciting and a bit scary.

I can honestly say that when I graduated from college a few years ago (okay, seven years ago, I fully admit I am getting old!) I would never have predicted I’d be doing what I am doing now, but I definitely knew I had some tough choices to make. At the time, I was still working through accurate diagnoses for my immune and lung problems and spent anywhere from 4-10 weeks a year in the hospital. I had to be realistic about what I could expect from my body, but I was also unwilling to abandon the career path I was most passionate about. I just had to figure out a more creative way to get the writing and publishing experience I needed.

Anyway, I’m thinking a lot about those early career days right now as I prepare to speak at DePaul University next week. My topic? You guessed it: career considerations for young adults leaving college. There are so many threads to this discussion, and many of these points were raised by patients I interviewed for my book:

Our careers are often a huge part of our identity, especially when we are in our twenties. Think about a typical night out—how often do people ask you what you do? What are you if you are young and not working?

Many companies and institutions are not equipped to deal with (and do not understand) the fluctuating nature of chronic illness.

Young people are often the most likely to be uninsured or underinsured, so many young people with CI must choose between benefits and deteriorating health.

We often have to make choices very early on in our careers—when our healthy peers are building a name for themselves—that put us at a disadvantage in terms of trajectory.

Of course these are just a few different points relevant to young people entering the workforce. As I gather my thoughts, I’d love to hear from any of you out there who are in the midst of these decisions, or remember what it was like to face the working world as a young adult with chronic illness. What wisdom, advice, or hindsight can you offer this next generation of employees with CI?

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The Waiting Game (and how to play it)

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(The third in an occasional series about pregnancy and chronic illness.)

A lot of the discussion in the first two installments of this series on pregnancy and chronic illness deals with what happens once children enter our lives: How do we be the parents we want to be with bodies that do not cooperate? In the ever-evolving dialogue of Can vs Should, it is an essential topic, one we need to keep picking back up.

But today I am thinking about the tricky terrain that comes before a baby, the decisions and risk analyses and variables we must weigh when figuring out how it is we will become parents.

For some women, infertility or infertility as a result of other existing illness is the issue. For others, being able to conceive children may not be a problem but due to high-risk medical situations, carrying them is. For others, it is a combination of both.

Regardless of the reasons why things don’t happen quickly, there is still the waiting game, the period of time between when you first realize things will not be easy or quick and when you actually have a child, whether through adoption, IVF, gestational carriers, etc.

Now, I do not claim to be a veteran in these matters and like many aspects of daily life, there are some conversations that will remain offline. Already there are many, many writers and bloggers who speak compellingly about infertility, adoption, and other options. But what I do know is that just like there are so many universals to living with chronic illness, there are many universals to this experience no matter where women are in this wait or why it is they are waiting, namely:

Every decision is deeply personal and should be respected, not judged. In the end, it is your family and your child’s future that matters, not what other people say or think (if only it were that easy!) And of course, the same applies to decisions to not have children after all–only you can truly know what is the best choice.

Each person’s situation is unique and cannot be applied to other couples with other sets of variables (for better or worse). Even women with the same diagnoses can have very different outcomes and different priorities going into things, so do your research and talk to everyone you can, but remember that what works for some people may not be the best fit for you. And that’s okay.

I also think that sometimes the hardest part of the waiting game is interacting with other people who might not know the whole situation or might not know what to do or say. It’s a shifting landscape for everyone involved:

If we want to talk about it, we will. If we don’t bring it up or deflect the conversation, take that cue from us.

Don’t think because we don’t want to talk about this particular aspect of life that we don’t want to talk, or get phone calls, or be the same people we were.

There is a difference between listening to us and advising us. When we want to fill you in but are not yet ready or interested in feedback, respect that. If we’ve brought you into these kinds of discussions it is because we value and respect your thoughts, but know there is a time and a place for your take on the situation. Sometimes we need to figure out how we feel about things before we can productively process what others think or feel. (I’m sounding a bit demanding here, aren’t I? Rest assured these are the same expectations I have for myself and my own personal conversations about this.)

What you may see as a positive may represent a loss to us, or vice versa. What may seem difficult or not ideal to you might just be wonderful news to us. Everyone involved has a right to his/her emotions, but it’s important to remember (or even expect) that there is no guarantee we will respond in the same way.

Please don’t think that people in this waiting period don’t want to hear about other children (or pregnancies), or spend time with other children. Our lives are undeniably richer because of the children already in them, and nothing going on in our lives could take away from that. I can’t speak for anyone but myself but the way I see it, there is no defined quota of babies or good news out there so your good news is just that—good news. It has nothing to do with my situation or my potential to have a family. Why would I begrudge someone else for having the very thing I know is so worth having? So no weirdness or walking around on eggshells, please!

Like I said, I’m certainly not an expert or veteran in all of this, and I know many of you have seen and experienced much more. If you have other considerations, suggestions, or general words of wisdom for everyone involved in this, please leave a comment.

(Editor’s update: I forgot to mention that the best thing you can ask for are these words: “We’re here for you and support you in whatever decision you make.” Fortunately, this is is something I’ve heard often.)

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A totally unrelated PS–Notice the new look at A Chronic Dose? Many thanks to Pink Dezine!

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3rd Summit Conversation: Interview and Insights on Health Care Reform

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If you’ve read recent headlines, scanned online sites, listened to President Obama speak at recent news conferences, or followed the flurry of Twitter updates and Facebook status messages, then you know that health care reform is a topic reaching across all types of media.

And with good reason, given the huge economic toll rising health care costs places on us, not to mention the quality of life issues involved for people without access to care or access to appropriate care.

Obviously, health care reform is not a new topic on this blog. A few months ago I wrote about the consensus-building Summit talks sponsored by The America’s Agenda Healthcare Education Fund. Today, April 7th, is the third Health Care Summit Conversation, hosted by Tommy G. Thompson, former Wisconsin governor, U.S. Secretary of Health and Human Services and Republican presidential candidate, together with the University of Wisconsin School of Law. Click here for streaming video of the event.

The point of these talks is to bring high-profile individuals from all different stakeholders involved in reform together. In a sense, the fact that individuals from across the health care spectrum (politicians, policy experts, health care providers, labor leaders, health insurance and pharmaceutical companies, etc) are engaging in these kinds of talks proves there is consensus: everyone agrees something must change, and that now is the time to do it. These conversations focus on how we can actually make that happen.

I tend to focus on the patient aspect of health care reform since it is what I live with every day, so I was interested in the opportunity to speak with Summit panelist David Y. Norton, Company Group Chairman, Worldwide Commercial and Operations of Johnson & Johnson this morning.

Given that chronic disease accounts for 75 percent of all health care costs and this is a chronic illness blog, you can probably figure out what topics I centered our conversation on. Here are some highlights:

On the best ways to reform how we approach patients with chronic disease—“There is no holistic view of the patient,” he says, pointing to our current fragmented nature of health care delivery. Whether it’s hospital care, medication, doctor appointments, etc, a more collaborative and holistic approach would not only reduce costs but increase health outcomes.

Related to this notion of holistic care is the medical home, with its emphasis on quality primary care. In addition, he feels that electronic medical records will help ensure information is shared “evenly and equally” with relevant parties.

He echoes the sentiments expressed by many right now that shifting our focus from acute treatment to incentives for wellness and prevention would make a big difference. “We currently reward treatment on fee-for-service basis, therefore the more tests you, you get paid more. But that’s necessarily quality care, so we need to focus on prevention and wellness.”

Co-pays are a disincentive for patients, particularly those with chronic diseases, since increased co-pays shift the burden of cost to them. People who don’t take their drugs see doctors more, end up in hospitals more, and end up accruing more health care costs later.

In terms of wellness initiatives and incentives, Johnson & Johnson already has a “very active program” for its employees. It includes a smoking cessation program, financial incentives for employees, healthier food options in the cafeteria, in-house fitness centers, etc. The annual savings in employee health costs is about $400. While there are other private companies doing similar things, Norton believes “we need to change the health care system to incentivize those patients in the private system and the public system to address prevention and wellness.”

On treatment of patients with rare/genetic/existing chronic disease (you knew I’d ask!)—Fundamentally, the goal is for affordable access to quality care for all citizens, and he believes pre-existing conditions should not exclude anyone from getting that quality care. More specifically, he points to stem cell research and other innovations as keys to eliminating or alleviating certain diseases.

(An aside: as a rare disease patient I would love to see even more innovative drugs come down the pipeline—can we agree we have enough nose sprays and acid reflux pills and look to sound policies that encourage the research and development of drugs that tackle smaller and rarer disease populations? Like much of this, it’s a collaborative effort.)

On the role pharmaceutical companies have in health care reform: Norton mentions that currently, pharmaceuticals account for 10 cents of every health care dollar spent. He sees improved patient education—better knowledge of their medications can lead to better compliance and less cost down the road—and physician education as important parts of reform.

(As another personal side note, check out this recent Boston Globe article on major changes in consumer education being proposed by the FDA. )

As he mentioned earlier, drug innovation is another essential component, as are policies that help patients who need medication access affordable prescriptions.

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Any type of consensus involves different parties with different agendas, priorities, and perspectives. Getting them altogether is the first step; seeing results that accommodate everyone’s needs is much more difficult. Be sure to check out the Summit Conversations and hear what David Y. Norton, Tommy Thompson, and a diverse group of other panelists are saying about health care reform.

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Blog Rally To Help the Boston Globe

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The threat of possible closure of the Boston Globe has been all over the news. As an avid daily reader as well as a freelancer who has written for the Globe, this news is deeply troubling. I first read on Running a Hospital how a number of Boston-based bloggers who care about the continued existence of the Globe have banded together in conducting a blog rally. We are simultaneously posting this paragraph to solicit your ideas of steps the Globe could take to improve its financial picture:

We view the Globe as an important community resource, and we think that lots of people in the region agree and might have creative ideas that might help in this situation. So, here’s your chance. Please don’t write with nasty comments and sarcasm: Use this forum for thoughtful and interesting steps you would recommend to the management that would improve readership, enhance the Globe’s community presence, and make money. Who knows, someone here might come up with an idea that will work, or at least help. Thank you.

Please participate and spread the word!

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National Young Adult Cancer Awareness Week

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It’s spring, which means the disease walk-a-thons, bike races, charity walks, and general awareness campaigns tend to kick into high gear.

As a rare disease patient, I watch these mobilizations with a mix of curiosity, appreciation, and intrigue. That these populations are big enough to sustain such events is, of course, a double-edged sword: so many people are impacted by them that there is strength in numbers, but that those numbers are so high is the very reason for the mobilization.

I had Rare Disease Day, and that was a start for me. People I love (or the people other people in my life love) live with all sorts of conditions, so I find myself sponsoring things like MS bike rides, arthritis or heart disease walks, or diabetes or specific cancer awareness events more and more. I’ve done the charity walk for Children’s Hospital Boston for several years.

But it’s the first year I’ve been aware of the existence of Young Adult Cancer Awareness Week, and I’m interested in it for many of the same reasons I wrote about for Rare Disease Day and many of the same reasons I wrote a book about chronic illness in younger adults:

This is a population whose needs are both unique and overlooked. There are thousands of types of cancer, but the larger universal experiences of getting diagnosed with it and living with it as a young adult are significant. From access to care and early detection to issues of employment and family-planning, these challenges affect so many younger adults across the country.

I had the chance to speak in person with Kairol Rosenthal last week, and it’s largely due to her advocacy that YAWC is on my radar this week. For a more in-depth discussion of young adults with cancer and the similarities they share with young adults with chronic illness, see my review of Rosenthal’s new book, Everything Changes.

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