Health Care Reform and Existing Chronic Illness

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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.

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Food Matters…

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This was the post I planned to write:

“I have to confess, I haven’t read Mark Bittman’s Food Matters yet, but I am intrigued by what I read in this review. A ‘Guide to conscious eating’ seems especially appropriate this time of year, when we tend to focus on eating well and starting new habits.

As a celiac, I am gluten-free by necessity, and as someone with chronic, progressive lung problems, I am dairy-free by choice. As I’ve written before, I no longer see this lifestyle as one of food exclusion but as one with a different set of possibilities. There is no question I feel better without gluten, and if the removal of dairy has made my congestion even a little better, it’s worth it to me.

I don’t plan on altering this combination too much, but I’ve thought a lot about how I want to embrace the spirit of change in the New Year. Over the past few months, I’ve shifted towards less animal protein and more plant sources, until somehow I found myself not having any animal protein until dinner, and sparing amounts at that. When I read how Bittman and a colleague embarked on a ‘vegan until six’ endeavor with limited simple carbohydrates to improve their health (there are lots of environmental reasons behind his choices too but I am focusing on health), I thought, ‘Huh. Who knew it had its own catch phrase?’

It’s really not too much of a shift from what we’re already doing in our household—planning meals in advance, making things from scratch in larger quantities for later use, shopping the perimeter of the grocery store. In essence, I’m continuing to swap out my midday protein for a plant-based one. But the difference is that now I am doing it more consciously. High cholesterol and cardiovascular disease run in my family, and I figure I have enough issues as it is.

I know many of you out there have made lifestyle changes and dietary changes that aren’t necessary for medical conditions (like going gluten-free if you’re celiac, for example) but have made a big difference in your health and in controlling chronic conditions. What has made the biggest difference, and do you have any regrets?”

So that was the post I had set in my mind until I received an e-mail about Share Our Strength’s “Operation No Kid Hungry” campaign to raise funds to help end childhood hunger and encourage Americans to hold food drives within their own communities. According to Share Our Strength:

“This campaign responds to President-elect Obama’s call to
action for corporations to serve our nation’s communities and builds on his commitment to end childhood hunger by 2015.”

I got to know this organization when I wrote a newspaper article on Operation Frontline, a nutrition education program for low-income families. It was then that I really started to see that conscious, healthy eating can be affordable and manageable.

Share Our Strength is running the campaign to coincide with Martin Luther King, Jr. Day, and there are two ways we can all get involved:

1. Text “SHARE” to 20222 on your mobile device to donate $5. AT&T will match all text donations up to $100,000.

2. Holding food drives within their communities beginning Monday, January 19th, which is Martin Luther King Day and a national day of community service.

Visit Share our Strength for more details.

And then I thought about how much food really matters, and how lucky many of us are to have the luxury to decide just how conscious our eating can be.

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Pregnancy, Children, and Chronic Illness: Can Versus Should?

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One of the most complicated chapters to write in
Life Disrupted was the one about pregnancy and parenting when you have chronic illness. There were so many variables to consider, and so many questions that don’t necessarily have answers.

As one of my doctors once asked, just because you can get pregnant, should you?

That’s not something that can be answered in a single blog post, a series of posts, or a chapter in a book, but it’s one I think many patients face in some form or another. I know it’s one we face, and have approached from all sorts of angles the past couple of years.

What makes it such a complex question is that the variables that go into it differ from person to person. From where I stand, there are two major concerns that dominate this discussion: (1) getting pregnant and safely carrying a baby when you have chronic illnesses; and (2) being able to care for said children when chronic conditions flare.

Like the severity and diversity of chronic illnesses itself, these concerns run the spectrum. For example, one young patient in my book suffered from chronic pancreatitis and wondered how she would manage child care during her severe pain episodes were she to have a child. She also worried about passing her condition on to her child. Another patient with cystic fibrosis became pregnant and was prepared to sacrifice her life for her child—and that was a legitimate possibility. She faced serious health challenges before delivering her healthy child, and had to agree to have full-time help caring for her baby afterwards before her physician would sign off on her pregnancy plan.

(For another poignant story of the risks and challenges of pregnancy and childbirth with CF, check out Confessions of a CF Husband.)

These are just some examples. I know pregnancy and type 1 diabetes has its own set of blood sugar concerns, or that multiple sclerosis exacerbations may actually improve during pregnancy but MS medications should be avoided while pregnant, and the list goes on…

And of course, there are chronic conditions that can cause infertility. I’ve written before about how PCD affects both conceiving and carrying a baby, and those concerns are separate from the issue of being able to care for children during prolonged exacerbations or hospitalizations.

I think the latter concern is particularly universal—whether it’s pneumonia or a viral infection, a severe migraine or other pain flare, or a lupus or arthritis exacerbation, the issue remains the same: How do you care for children on the days when you cannot care for yourself? Those of you already balancing these competing needs, I’d love to hear your input. I’ve collected some patient stories on this, but it’s a conversation that continues to evolve, and the more voices the better.

If your chronic illness influences fertility or causes high-risk situations, how do you draw the line when it comes to medical intervention, whether it’s assisted reproduction or deciding when it’s time for a pre-term delivery?

There’s another distinction that fascinates me, and that’s the distinction between wanting to be pregnant versus wanting to be a parent. I don’t think I realized there could be a distinction until recently, and maybe there isn’t for everyone…but when you’re weighing what’s best for the mother and what’s best for a potential baby and what’s best for a family, I think it’s a relevant one.

In terms of the “can versus should” question, I wonder how many women prefer adoption? Is chronic illness an impediment to adopting, or does showing your conditions are under control suffice?

It’s an exploration that’s been on my mind ever since I wrote this Salon.com-inspired post about choice, and I think this angle is a natural extension of any talk about children and chronic illness.

I realize these are deeply individual choices, ones tied up in personal preference, disease progression, risk tolerance, religion, economics, and health insurance, to name but a few of the factors. There are no easy answers, and there are no “right” answers. Not everyone can afford to have help with childcare, not everyone can afford medically intensive pregnancies or to not work during high-risk pregnancies that require bed rest, and not everyone who would like to can afford the cost of adopting or having IVF.

(I know adoption and IVF are expensive regardless of existing health status; I’m merely focusing this discussion on people who are considering these options in conjunction with chronic illness.)

I guess in the end the variables and “can versus should” deliberations boil down to a different consideration altogether: how to be the parent you want to be when with a body that doesn’t cooperate.

So, if you’ve been through this, are actively discussing it, have plans for parenthood down the road, or became sick after you had children, please chime in.

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2008’s Year in Review and Looking Forward

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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!)

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Primary Care and Chronic Illness–The Update

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Awhile ago, I wrote about the challenges of primary care when you are a patient with multiple (and rare) diseases…Or, as my friend Lyrehca says, when you are “clinically interesting.” I have specialists for several different body systems and they each provide fantastic care, but I don’t want to bother the lung guy with the GI problems, or the rheumatologist with the allergic reaction.

So, I embarked on a quest to find a primary care physician. I wanted my new doctor to be in the same hospital as all my other doctors, and finding a group that still accepted new patients proved daunting. Life, the book, and work got busier, and I let the search slide a bit. Then this summer I came down with mesenteric adenitis and was shuffled between specialists and eventually sent to the hospital. I came home re-committed to finding a primary care doc, someone who could have fielded that problem, and put my name down for an appointment five months down the road.

Well, that initial appointment recently happened, and it feels good to have someone coordinating all the moving parts of my care. My new doctor and I clicked; I felt comfortable talking with him, and I appreciated that he’d already become familiar with my case and had been in touch with my other doctors. Since they all work in the same system, they all have access to my latest test results and notes, and I’ve never had such efficient, streamlined care. The new doctor noticed some unusual lab results no one else had looked at—because they didn’t fall under their realm—and followed up on them. We made some important decisions about diagnostic tests for other problems, and I feel good about moving forward.

It’s been almost 20 years since I’ve had an official primary care doctor, and I told him I was worried about contacting the appropriate person for certain infections. Those of you with more experience negotiating this balance between primary care and specialists, do you have any feedback?

“With all you’ve been through you know your body best. Just trust your instincts,” he said. Sounds like a plan, indeed.

On a less personal level, I’d also like to circle back to the issue of universal health care in Massachusetts. As I mentioned before, part of the primary care shortage and the several months’ wait many patients find when they try to make an appointment is an unintended consequence of providing insurance to more people…and of course people without prior access to health insurance and preventive care are often most in need of primary care physicians. Anyway, according to this recent post on WBUR’s Commonhealth blog, Massachusetts now has the lowest rate of uninsured citizens in the country. This is wonderful news—now, let’s try and make sure each of those citizens can get an appointment!

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Season’s Greetings…

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Well, I’ve been a delinquent blogger. I have several posts in stages of completion, but I’m having some aspiration issues here at A Chronic Dose (the physical kind, not the ideological) that demand full attention. Expect a real post in a few days but until then, Merry Christmas, Happy Hanukkah, and Season’s Greetings to everyone!

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Grand Rounds Vol. 5 No. 13

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Grand Rounds Vol. 5 No. 13: The Best of 2008

It’s the time of year when the “Best of ” lists start popping up everywhere. As a writer, I pay the most attention to the holiday book lists and that is where I got the inspiration for this edition’s theme. Quality writing is a gift to everyone who reads it, so I challenged the medical blogosphere to send me the best writing of the year–the funniest, most poignant, most controversial, etc. What follows are the Best Posts of 2008, as selected by each of the 49 bloggers who submitted to this week’s Rounds.

(*= Editor’s Choice. Think of these posts as the best of the “Best Of…”)

Best of Health Practice
The way doctors, nurses, and other health care professionals interact with patients and with each other, the way our bodies interact with the environment around us, the way the health care system interacts with emerging technology—these are just some of the topics covered in the Health Practice category. There was a lot of wisdom passed around in 2008.

*Kim at Emergiblog offers a post on empathy she is particularly proud of—and once I read it, I could see why. A must-read, indeed.

*Doc Gurley chose “How To Break Bad News,” thinking its message would appeal to new readers. I have to agree, and I’ll add that its content is important for everyone.

*The Happy Hospitalist describes what a real life Code Blue resuscitation is like in “Don’t You Dare Touch Me.” When you read it, you’ll understand why.

Canadian Medicine is most proud of this post about the dangers of anonymous blogging. It’s an extremely relevant topic for everyone involved in medical blogging, and a great treatment of it.

Notes of Anesthesioboist discusses Code Indigo. Not sure what that means? Be sure to read this powerful post.

Medicine for the Outdoors considers this post on the environment to be the most important subject matter covered on his blog all year. His explanation of why is thoughtful and detailed.

Other Things Amanzi describes a textbook case that is anything but usual.

Clinical Cases and Images Blog asks, “How Should Hospitals Use Twitter?” It’s a good question, so make sure you catch up on the conversation.

Allergy Notes continues with the theme of Twitter as quite the hot topic in 2008 in the post Allergy and Immunology Journal Club on Twitter.

Dr. Shock ponders if psychiatrists should wear white coats. According to one study, 96% percent of patients preferred their psychiatrist sans white coats. Do you agree?

Sharp Brains sends along “Art Kramer on Why We Need Walking Book Clubs,” where they discuss how emerging brain research areas are going to have a major impact on our lives in the next 5-10 years.

Teen Health 411 suggests a recent post about developmental assets and teens, calling it “the closest thing to a guidebook for conscious parenting I have ever seen.”

Receiving shares an interview with Dr. Lewis Goldfrank, a world-renowned emergency physician and toxicologist who is dedicated to social justice and human rights.

The Angry Medic learns from a patient that really, some wounds never heal.

Neuroanthropology writes about
Our Blessed Lady of the Cerebellum, a compelling story of personal, medical, and political drama.

Dethmama Chronicles offers the story of a daughter’s last act of love and respect for her mother in “Joie de Vivre et Madame M.”

Leslie at Getting Closer to Myself explores the emotional impact of chronic illness and questions the concept of “First Do No Harm.”

Lyrehca at Managing the Sweetness Within deals with the best way to treat insulin reactions. She’s a diabetes veteran, so she would know.

Aequanimitas discusses the unique qualities of elite alpinists in “Achieving Impossible Heights.” Check out what it takes for yourself.

ACP Internist tells us that alternative medicine use holds steady at more than 1 in 3 Americans. This post follows up a topic that is occurring more and more frequently in the communication from patient to doctor.

Laika’s MedLibLog describes the difficult concept of randomized controlled trials in an easy to understand manner.

The Fitness Fixer offers innovation in abdominal muscles, saying this post was one that directly quickly stopped the source of chronic back pain for many people who wrongly thought they had to tighten or strengthen abs to stop back pain.

Best of Health Policy
As you know, 2008 was a busy year in the world of health care policy—the recent presidential campaign certainly added more urgency to important conversations about health care reform, health insurance, and other issues surrounding health care delivery.

*Mind, Soul, and Body writes an impassioned response to where the path of blaming patients for their illness will always lead in “Those People.”

*Mike Feehan at InsureBlog thinks many people mix up health care and health insurance—and he’s here to set the record straight. (I love a good semantics discussion…)

David Harlow of HealthBlawg tells us that
ambulance diversions will soon be banned in MA and explains how overcrowding factors into this decision. Be sure to read miss his interesting interview with Alasdair Conn, MD, Chief of Emergency Services at Massachusetts General Hospital.

David E. Williams of Health Business Blog asks an important question to think about as we move forward: Generic Biologics –or Me Too Drugs 2.0?

Duncan Cross has a decisive answer for why health insurance is tied to jobs.

Survive the Journey shares some good ideas on how to address the primary care physician shortage in “Dear Doctor, I Can Help.”

Louise at Colorado Health Insurance Insider stirs up some dialogue when writing about the affordability of health insurance.

Best of Health Humor
Even weighty topics warrant a good dose of humor, and I’m pleased to see a little snark, some (not so) subtle sarcasm, and the occasional silly story come through in 2008.

*Barbara K at In Sickness and In Health likes the idea of starting the year with a laugh and offers “A Conversation Overheard in a Waiting Room.” Since I live in the Boston area, I could really relate.

How To Cope With Pain takes a break from more serious topics in chronic management and gives us a
humorous look at invisible illness courtesy of “I Can Haz Cheezburger” photos.

*The Week is used to medical school rejections, but one in particular came from Drexel many weeks into the academic school year: “As if I was on the edge of my seat thinking they would accept me after classes began!”

At Sutures for a Living we hear what it’s like to have “one of those days” in the post “Mama said there’d be days like this.”

Dr. Val offers some Christmas humor in “The Christmas Miracle.”

Shrink Rap keeps up with the holiday theme, offering an edgy piece about gifts.

Dean Moyer of The Back Pain Blog offers some tips for avoiding injury in
Back Pain and Anger. And for what it’s worth, kicking a fire hydrant isn’t one of them.

Covert Rationing Blog sends along
“How To Think About the Obesity Dividend,” saying that “my usual ironic voice was misinterpreted here by more than a few. While it is probably a sign of my own pathology, I always enjoy it when that happens.”

Best of Health Inspiration
Attitude is an important part of living with medical conditions, and the following posts offer insights and experiences that uplift, entertain, or motivate.

*Rosalind Joffe at Working With Chronic Illness thinks fighting illness is the wrong approach. Check out her reasons why.

*Kerri at Six Until Me writes about her wedding day, the best thing that happened to her in 2008. It’s written “with love in mind and with diabetes in mind.”

Jenni at ChronicBabe says she wants to be a turtle, which she calls “the concept of carrying your positive self everywhere with you; the times when things are hardest and you just want to pull your head inside your shell; and the benefit of going slow and steady – pacing yourself.”

Adventures of a Funky Heart! says you can’t help but getting “fired up” about all the things that are coming in the Congenital Heart Health field when you sit down and talk with Amy Verstappen, President of the Adult Congenital Heart Association.

Rachel at Rachel’s Diabetes Tales is getting back into the exercise groove a few weeks early. Who needs to wait for New Year’s resolutions?

Chocolate, Music and Hope offers “Hair Today, Gone Tomorrow: Learning to Accept Disability,” saying it is “the most meaningful post I have written to me because it really marks how far I have come in learning to accept my disability…”

In “All Souls,” Writing and Healing responds to a patient’s death and learns firsthand how reflective writing can bring clarity, release and a profound gratitude for simply knowing the patient.

Day of the Doc remembers all the veterans in our country and poses a heartfelt and educational discussion of PTSD.

Lastly, Emerald Arts gives us inspiration of the visual persuasion. Check out her post in photos chronicling a day at the beach.

Best of Health Debut
Since 2008 was my debut year as well, I can relate to what it feels like to put yourself out there for the first time. The bloggers who sent the following posts have never submitted to Grand Rounds before, but took the plunge and shared their estimation of 2008’s best posts. Welcome!

Genevieve at Spit Happens has a rare form of cystic fibrosis coupled with bronchiectasis (a girl after my own heart with those diagnoses). In this post on chronic illness and relationships, she discusses the downside of being a passionate fighter—and no, she’s not crazy.

Living in the Midwest knows the low point chronic illnesses can bring a patient to—and wants to confront it directly and honestly.

My Journey from Nurse to Doctorshares what happens when a mentor is anything but in “How Things Change.”

Thank you to everyone who submitted posts and made the Best of 2008 possible. Highlight Health will host next week’s edition.

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