Where's the Patient in Health Care Reform?

I’ll admit, it was a bit conspicuous. After over a year of posts comparing facts in health reform, looking at private versus public insurance plans, even meeting with President Bill Clinton to discuss health care, the week the monumental new legislation passes, I am silent.

I know, right?

Here’s the thing. I wanted to comment, to turn on the analytical part of my brain that has logged into press calls and covered health care summits.

However, I was too busy being a patient to attend to this blog. More specifically, I watched late-night cable coverage of the vote from my hospital bed, where hours of stacked medications, oxygen, and all sorts of pwerful drugs tried to stabilize me. I managed one paltry Tweet about it, but my IV beeped as soon as I moved my arm to type and the whole not-getting-enough-air thing made me foggy.

When you’re working so hard for breath, there is little room for anything else.

In a strange way, perhaps that is somewhat fitting. Over the past few weeks, it seems like the rhetoric, the scare tactics, the fighting over funding and abortion and so many other flash points have totally taken the focus away from the one group at the heart of this debate: patients.

“The only people who are happy with their health care are either rich or healthy,” I joked to a relative, one who is vehemently opposed to health care reform (or, at least this version of it). But there is truth there-most health plans are designed for healthy people who rarely need to use them, who do not have to wage appeals and write letters and make so many important life decisions based mainly on the availability of those plans. If health insurance is something you only have to think about when it’s time for open enrollment, then it is a lot easier to shove it off as someone else’s problem.

If you’re fortunate enough to have chronic illness and can afford the platinum plans where you do not worry about annual caps or having treatments denied then you do not live with the same sense of precariousness and vulnerability millions of Americans do.

Let me be clear about this: I have reasonably good insurance and have always been fortunate to have reasonably good insurance. I fight my battles regarding medical necessity (complicated by having rare diseases, for sure) and I still pay a lot of money out of pocket but I cannot complain. However, whether I’m feeling okay or lying in a hospital bed, I work seven days a week in order to get those benefits-a full-time job, part-time jobs, consulting work, and book-writing. I have made huge, career-altering decisions based primarily on health benefits. Physically, emotionally, mentally, I have made compromises and adjustments in the name of health insurance. A lapse in coverage has always been a catastrophic thought for me.

For me, simply being born tagged me with the label of “pre-existing condition” and for three decades I have lived underneath the bureaucratic burden of that title. Knowing that is one fear patients with existing chronic illness don’t have to live with anymore is huge. Knowing that down the line, I could have more flexibility in terms of choosing career options based on proclivity and preference and not benefits is equally huge.

I find so much of the drama around this bill ironic. Some frame it as a right to life issue but because I excel at being the devil’s advocate, what about the lives of millions of Americans that will end too quickly because of lack of appropriate care? Some focus solely on the economic issues around the legislation, but those of us who’ve been paying attention to chronic disease long before it became the hot-button issue for discordance and grandstanding also know that we already spend 75 cents out of every health care dollar on chronic illness and that prevention is much less expensive than the complicated interventions that are standard operating procedure right now.

But honestly? Right now I can’t even start unraveling all these threads.

Intellectually I understand the concerns of, say, small business owners or entrepreneurs worried about how the bill is funded. I understand people who fear the government may not be up to the task of administering such a broad program. I understand this legislation is far from perfect, and as we've seen here in Massachusetts, I know that when you implement a sweeping change you need to prepare for the consequences, both intended and unintended.

But all of the rhetoric, analysis, or debate in the world does not change the fact that for many, many patients out there, the debate is anything but rhetorical and the consequences extreme.

I’d done everything right to manage my conditions but still ended up in the hospital. I can only imagine the bill for the diagnostic tests, the x-rays, the IV meds, the nebulizers, the pills, etc. But what is truly unimaginable is what would happen if I had to pay for that hospital stay completely out of pocket.

My house, my health, my family, everything I’ve worked so hard to maintain, would all be threatened.

As I lay there, covered in EKG leads and medical tape and beeping from multiple monitors, the ticker tape reports of the "Baby-killer" outburst and protests flickered across the screen. I adjusted my oxygen and raised the volume a little bit louder as our leaders began to speak.

It is easy to be reactionary and inflammatory when you have the luxury of health, I thought. When you’re consumed with survival mode, suddenly things are a lot more simplified.

As much as I don’t want to be defined by this role, I am a patient. And what better place to be reminded of our vulnerability in this system than in the hospital?

I am one of the lucky ones. I know when the bill arrives or I need to schedule another follow-up appointment with a specialist that these events will be insignificant.

But shouldn’t it be that way for everyone else out there trying to survive?

Hopefully soon I’ll have something more insightful or analytic to add, but for now I am compelled to focus on the one thing that seems to get shoved to the side in all of this: the needs of the patient with existing illness.

When Silence Speaks Volumes

I read this NYT piece, Are We Going to Let John Die? the other night and am only now just getting around to linking to it. It got me riled up, and like a successful Op-Ed piece should regardless of where we stand, it made me think about the issues involved.

From a research standpoint, health care reform remains on my mind these days. Right now, I’m looking at the civil rights movement, the early AIDS movement, and the disability movement and their influence on chronic illness. In terms of catalysts and goals for the chronic illness community, certainly health care reform is a significant issue. (Stay tuned, as I have a lot more to say about all of that…)

But when I move away from the books, journal articles, and interviews and look at daily life, and the recent content of this blog, I can see I’ve moved away from policy and reform a bit. This past spring and summer, it was hard not write about—from watching webinars that explored private versus public insurance to digesting the health care conversation with Bill Clinton to discussing the particular needs of patients with existing chronic illness, the subject was always fresh in my thoughts.

But lately, not so much. It’s still in the headlines, and I still read the articles. It’s still the topic of morning radio shows, and I still listen to NPR. Yet despite my cognizance of it, and its obvious importance to me as a patient, it hasn’t crept into my own titles and hasn’t been featured in my own writing.

The difference? Honestly, I think a lot of it has to do with the fact that this summer was relatively calm in terms of my health. I could manage the juggling act and stay on top of things with enough mental energy to engage in the dynamic conversation. Since September, I’ve spent 6-7 weeks acutely ill. Now, I am used to this cycle. If you’ve read this blog with any regularity, you’re probably used to it, too. It’s just the way things are when you’re blessed with dodgy lungs and a pathetic immune system and other medical complications right now.

On the positive side, I can say the infections haven’t been as bad or lingered quite as long as they normally would because of the very proactive, very aggressive preventive protocol I have been following since last March.

I’m a walking risk/benefits analysis, really.

While the cycle is all too familiar, what distinguishes it right now is that my workload has never been more intense. When infections sap my energy and consume my already scant hours of sleep, it hits me even harder. Or, to be more blunt, when I am sick it takes every ounce of energy and focus I have to just make it work, to get through the day and accomplish the tasks I need to in order to stay on track.

When I am sick, I fall off Twitter. I become a comments slacker on other blogs, my response time to e-mails takes a notable dive, and I beg off pretty much every commitment. I enter the Black Hole where the only things I can focus on are trying to get air and not falling behind in work. I read articles without comment, I skim headlines without linking.

In short, at times I am too busy being sick to contribute in any meaningful way to the conversation of the very health care reform that could define my patient experience.

Ironic? No, it’s inevitable. It’s life with chronic illness.

I get sucked into the Black Hole of silence even with a ton of local family and friend support, with an amazing husband, a relatively flexible career, a world-class hospital 10 minutes away, a healthy stubborn streak, and twenty-nine years of experience living with illness. Oh, and with very good health insurance.

Scary, when you consider the millions who cannot say the same.

(Also inevitable, rather than ironic: what keeping that wonderful health insurance has cost me so dearly in so many other ways, and how precarious it feels nonetheless.)

I guess I can tell I’m starting to improve. The ability to be riled up is always an encouraging sign.

Comparing Facts in Health Reform

From the television ads and late night comedy sketches to the daily headlines about “death panels”and colorful town hall meetings, it’s obvious the dialogue surrounding health care reform is as contentious as ever.

But what about the substance of the actual proposals, which seems somewhat lost in all of the rhetoric? Chronic illness is a huge factor in reform, which is why I listened in with interest to a press call announcing Partnership to Fight Chronic Disease’s release of “Hitting the ‘Bulls-eye’ in Health Reform: Controlling Chronic Disease to Reduce Cost and Improve Quality.” The document is a side-by-side comparison of the bills and offers five recommendations for how Congress could control costs through chronic disease prevention.

You can access the publication by clicking here.

As the PFCD’s Dr. Kenneth Thorpe pointed out during the press call, looking at the big picture there are two major sets of issues involved in the health care debate: slowing down health care spending and improving quality, and providing insurance coverage to the millions of uninsured Americans. While the latter is hugely important, with the release of this document the PFCD is focusing on the first set of issues, which affect the chronic disease population in significant ways.

Thorpe characterized the current proposals a “good start” but said the idea would be that Congress would come back in the fall and build on this foundation and offer more aggressive solutions. As such, the report identifies five areas to target, many of which are familiar to us by now: prevention, better coordination of care, reduction of administrative costs, etc.

One thing I was really pleased to hear relates to disease prevention. Of course, we all know the best way to reduce disease expenditures is to prevent conditions from developing in the first place, and there are many specific ideas relating to that. As I’ve written before, when it comes to health care and existing chronic illness, prevention is often more a question of preventing progression than anything else. As such, I paid particular attention when Dr. Thorpe said we need to make sure we’re allowing patients to manage their own conditions and we need to remove barriers that stop them from doing that. His examples included getting hypertension re-checked or following up with blood sugar testing with doctors to prevent long-terms complications like amputations, but my mind went immediately to the types of long-term therapies (like chest PT) that keep patients like me out of the hospital.

The side-by-side comparison of proposals is really quite helpful, so make sure you click on over and go through the information yourself.

Health Reform Updates

It’s another big couple of weeks in the push for health reform. During his press conference today, President Obama said that health care reform is not a luxury but a necessity. He clarified again that those with private insurance who are happy with it can keep it, but also made it clear as forcefully as I’ve heard him that unless major reform happens, they won’t be able to afford those plans in years to come.

As the lead up to Wednesday night’s “Questions for the President: Prescription for America” special on ABC continues, I saw Obama’s emphasis on containing cost in today’s press conference telling. After all, last week was a tough one for the push for reform, with many fearing the $1 to $1.6 trillion price tag associated with proposed bills would spell the end.

In the middle of the speculation about health reform’s demise and sticker shock came the announcement that Senator Max Baucus (chairman of the Senate Finance Committee) and the country’s pharmaceutical companies reached an agreement to help close the coverage gap under Medicare’s Part D prescription drug program, which enrolls some 27 million elderly patients. Prior to this agreement, Medicare recipients paid the full price of brand-name drugs once they reached $2,200 in medication expenses and until they hit an upper limit of $5,100—an expensive and problematic “doughnut hole.” In a press release from the White House, President Obama said “The existence of this gap in coverage has been a continuing injustice that has placed a great burden on many seniors. This deal will provide significant relief from that burden for millions of American seniors.”

You can watch President Obama discussing the prescription drug agreement here:



The agreement will result in an estimated $80 billion in savings over the next several years. According to PhRMA, “Under this proposed new legislative program – which represents the first important step in health care reform – America’s pharmaceutical research and biotechnology companies have agreed to help close the gap in coverage. Specifically, companies will provide a 50 percent discount to most beneficiaries on brand-name medicines covered by a patient’s Part D plan when purchased in the coverage gap.”

The savings are undoubtedly significant for the seniors struggling to pay for bills. They are small relative to the overall price tag of health reform, but a confident, emphatic stance from the Obama administration in the midst of all of this speculation is a good sign right now for anyone invested (and really at this point who isn’t, despite which side you might stand on?) in health reform.

I won’t see tomorrow night’s program—I’ll be in a plane, trying really hard not to catch anything since I do that like it’s my job—but I look forward to reading about it. As recent events illustrate, it should be an…interesting evening.

Disease Prevention and the 4th Summit Conversation

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.

Young Adults, Chronic Illness, and Employment

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?

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

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.

* * *
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.

Health Care Reform: Is the Timing Right?

A few months ago, I wrote about the economic impact of a health care system run amok, calling it the “other crisis.” When we're too sick to participate in the workforce, when our employers can't keep up with skyrocketing costs, when preventable diseases go unchecked and result in costly complications, we all pay the price.

Now, with the recession dominating headlines and the widely circulated fear that health care reform will take a backseat to the economy, it’s easy to dismiss the urgency for significant reform.

Yet I’d argue the stakes are greater than ever, and that now is the time—economic health is inextricably linked to our ability to access and maintain appropriate medical care. I believe this in terms of existing chronic illness, of course, but that’s just one part of it.

Why do I write this today? Because today was the first in a year-long series of “Summit Conversations” sponsored by the America’s Agenda Health Care Education Fund. These consensus-building talks bring together a diverse group of entities—politicians, policy-makers, labor unions, big Pharma. Very rarely do we see these groups united under a common goal.

The January 28th Summit talk was held at the University of Miami and hosted by President Donna Shalala. In a recent Miami Herald op-ed, Dr. Shalala wrote,

“The Summit Conversations commence at an opportune time. Recent polls show three-quarters of Americans expect major healthcare reform legislation to be passed in President Barack Obama's first term. Democratic leaders in Congress are reaching across the aisle for bipartisan support, and there are promising responses from business and labor.”

Let’s hope she is right, that this is the right time for the right groups of people to come together, build consensus about reform, and turn that consensus into change.

In so many ways, we can’t afford for that not to happen.

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In other news, be sure to check out some of the medical blogosphere’s best this week: a fantastic Grand Rounds is up at ChronicBabe, and this month’s pain-blog carnival is up at How To Cope With Pain.

Health Care Reform and Existing Chronic Illness

On the cusp of Obama’s inauguration, it’s hard not to get excited about the potential for health care reform in America. After all, some promising issues were touted during the campaign: affordable health insurance for all Americans, investment in electronic medical records and biomedical research, and increased focus on disease prevention and disease management, to name a few.

As a resident of Massachusetts, whose universal health insurance law has made us the state with the lowest uninsured rate in the country, it’s been especially interesting to see the successes and the inevitable complications of implementing this type of reform.

Obviously I think the most important thing we need to do is make sure people have access to health insurance. There are many, many reasons to support this notion, but I can’t help going to the most personal: As you know if you’re familiar with this blog, I am a patient with multiple chronic diseases—lifelong, progressive diseases that require constant care and maintenance. Even with reasonably good insurance a significant portion of our budget goes to health care expenses, and most of our major life decisions are made around issues of health outcomes and health insurance.

Ask me to try and live without the insurance that makes this possible, and everything else I’ve worked for in my life crumbles. That’s no way to ensure a sound economy, let alone a positive health status or a reasonable quality of life.

It’s not surprising, then, that beyond increasing access to health insurance what matters most to me is how we approach chronic disease in this country. Preventive medicine and wellness initiatives are hugely important, especially in terms of preventing and treating costly diseases like type 2 diabetes, obesity, and related health problems. From a health perspective and a financial perspective, this makes so much sense, and I hope the measures proposed during the campaign come to fruition.

But there’s more to this notion of preventing and managing chronic disease that demands attention. Consider that one in 12 Americans live with autoimmune disease, or that 25 million Americans live with more than 600,000 rare diseases and you begin to understand the scope of existing chronic illness in this country.

What matters to me are policies that make it affordable to maintain existing chronic illnesses and help prevent disease progression. For example, in terms of my ability to work, contribute to society, and minimize cost and use of resources, I am much a much cheaper patient when I can get the medications and routine physical therapy I need to try and prevent serious lung infections than I am when I am an inpatient.

For patients like me, health care that covers our nebulizer medications, certain IV therapies, or chest physiotherapy not only keep us out of costly hospitalizations in the short term, but they lessen the damage to our lungs that can mean massively expensive problems down the road.

Like so much about chronic illness, the universals here are much more significant than the personal details—whether it’s degenerative arthritis, multiple sclerosis, etc, being able to take the appropriate medications and access the treatments we need to stay healthier and remain productive contributors to society is so important.

Above all, it just makes so much sense…which is though I have a healthy dose of skepticism, I am cautiously optimistic about where we’re going in terms of health care reform.

2008's Year in Review and Looking Forward

This time last year I was homebound and pretty sick, and all I could do was think about how glad I was to not be in the hospital. Apparently not much changes, because it is New Year’s Eve and I find myself several days into a battle to avoid being an inpatient—and extremely grateful to be able to type from home.

But to say not much has changed in 2008 would be a big understatement, both personally and publicly. Looking back over this year’s posts and this year’s headlines, I find that perhaps inevitably, there is some overlap.

Of course, 2008 was the year of my first book, and I found myself thinking a lot about writing, language, and the power of narrative medicine. I did lots of things I’ve never done before, like radio interviews and book readings, and some things that were all too familiar (hello, canceling highly anticipated plans due to various plagues…). Now, I’m looking towards the next big project.

In the larger world of health care, health policy and economics, there was the same blend of highs and lows that made their way into my world. Massachusetts made great strides in terms of universal health care (despite some complications), and 2008 was an election year in which health care and the female vote mattered. As exciting as moving in a new direction is, of course it’s also tempered by serious economic woes, job loss, and even everyday expenses are more of a burden.

Whether it’s hope in the future president, hope for a new job or a steady job, hope for health insurance or housing, hope for a family or a diagnosis or simply the hope for more good days than bad, may 2009 be a year where we hold onto the highs and where the lows even out, a year of hope for our futures.

(As a seasonal aside, visit me here for simple tips for a healthy New Year!)

Education, Disrupted: An Update

This past May I wrote about the challenges college students with chronic illness face in terms of achieving their goals and staying enrolled. I also wrote about the great work the Chronic Illness Initiative at DePaul University is doing to help students overcome these challenges.

As an update to that post, I'm happy to pass along this news story about Michelle's Law, a bill passed recently that, according to the Boston Globe "would allow allow seriously ill or injured college students to take up to one year of medical leave without losing their health insurance."

It's sadly ironic that in cases like this, students with serious conditions who are trying to treat their illnesses or recover are often penalized by losing the very insurance they need to survive. That's why this legislation is exciting, promising, and...logical.

Who would have guessed it?

Taking a Look at Healthcare Policy: The McCain Campaign

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.

Incidental Economics of Illness

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.)

Universal Health Care and Primary Care Problems

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.”

Policy and Protest

I’ll start with the preface that I know I am fortunate to have health insurance. It isn’t the best insurance out there but it isn’t the worst and relatively speaking, I know I don’t have much right to complain.

But.

Obviously when we’re talking about health insurance you know there’s a “but,” right?

I’ve long since accepted that the glory days of my past insurance life are over, the days when my Daily Chest Physiotherapy was covered, you know, daily, and routine doctor visits didn’t cost hundreds of dollars. I use Express Pay for my many refills and pretend not to notice what the amount due actually is, figuring I’ll just deal with the full blast at tax time. I take what I can get.

Still, it’s impossible for me not to get fired up at the state of healthcare, at the exorbitant cost of heavily marketed blockbuster “me-too” drugs, at the futile feeling that preventative care is the most important thing we can be doing but is still not a priority to many. I will return to this line of thought in one moment, rest assured!

Recently, I had my own minor little indignation. I picked up my refills and a generic prescription for allergies/sinus congestion I’ve had since 1996 cost 10 times what it did last month. Now that was an Express Pay bill I couldn’t ignore! I made many phone calls to the insurance company and the prescription benefit people and actually ended up conferencing both parties since their knowledge of what the other was doing was so woefully inaccurate. I found out that as of January 1, the medication was no longer covered, despite the fact that we pay extra each month for “premium” prescription coverage and despite the fact that drug is listed on the company website as the “preferred drug.”

The real kicker? No other drug in that whole family is now covered. At all. Huh? Now, I realize that of all my meds it’s the least serious one. It’s not like they took away my thyroid medicine or my heavy duty antibiotics or my refined nebulizer medications. The world won’t end. But, as I said to the woman on the phone, it doesn’t make much sense. Keeping my sinuses clear means less gunk spreads to my lungs and lodges there, which in turn means less need for massively expensive antibiotics and even more expensive hospital trips.

Go figure.

Anyway, just as I was stewing away at the arbitrary and exhaustive ban of all medicines relating to sinus congestion, I checked my inbox. It just happened to be full of links and resources relevant to my position here—and yes, it really happened this way, as contrived as the timing may seem.

So, back to my main point here: Information is power. For all of you who feel frustrated, who are nursing your own indignations and outrages, who want to know what’s really going on with your healthcare and what you can do about it, I offer up the following suggestions:

PharmedOut is an independent, publicly funded project whose goal is to empower physicians to recognize and counteract inappropriate pharmaceutical promotion. Last week they released publicly a slideshow called “The Physician-Pharma Relationship." Check out the press release and slideshow here.

Not on the Center for Science in the Public Interest’s e-mail list? Click here to check out the site and sign up to get regular summaries of what’s going on in the world of science and health delivered to your inbox. From disclosing financial conflicts of interest in research studies that affect your life to the latest analysis of FDA policy changes and announcements, the Integrity in Science Watch e-mail is a treasure trove of the kind of information you need to have but can’t always get to easily.

It’s no secret that healthcare is one of the most pressing political issues out there. Election year scrutiny got you thinking? Visit the Partnership To Fight Chronic Disease, a great resource that is a “national coalition of patients, providers, community organizations, business and labor groups and health policy experts, committed to raising awareness of policies and practices that save lives and reduce health costs through more effective prevention and management of chronic disease.”

As for me, I’m planning my next phone call to try and remedy this pill situation. Luckily I’ve got plenty to read while I wait on hold.