Sunday, March 28, 2010

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.


Melanie said...

I really can relate to this post. I am 21 years old and have incurred thousands upon thousands of dollars of debt from medical expenses. I am not in debt because of spending too much on my credit cards, and I even have less debt from school. It is simply because I have a chronic illness and my school coverage is not enough to cover it.

Your statment about people who are so vehemently opposed to health care reform are people who are health rings very true to me. I have spent four (soon to be five...) years in college intending to start one career path, and my fear of not being able to find coverage in that career path has made me seriously reevaluate my choice.

I am very happy that health care reform was passed. Even though the preexisting conditions clause does not come into effect until 2014, I have hope that I will be able to be who I want to be and not worry that I will not have insurance coverage.

Hope you feel better,

Unknown said...

Laurie – I am so delighted to find your blog via a twitter link from @SteelersGurlie, and hope to read your book soon.

I have lived with chronic illness since my late teens in the early 1970's. Since getting dumped at 22 off the coverage I had as military brat, I have spent my life chasing healthcare rather than dreams, as I have written to any number of politicians. For a number of years before the passage of HIPPA, even moving from one company to another was dicey.

Ironically, a long lapse in diagnosis-thought it destroyed a lot of joints- worked to my benefit in the insurance realm, in that I could for many years skip the boxes under the "have you ever been diagnosed with...." column. With the advent of the internet health forums many years later I found myself explaining to patients how doctors are often reluctant to diagnose because of the implications for future insurability. If the initial treatment can be prescribed without a diagnosis, why burden the patient with the label? It's a broken system that is finally beginning to be fixed.

One of the drugs I was finally put on for rheumatoid arthritis is about 24K per year on the open market. Because of that cost, I have always felt I had to be with a fairly large group in order to avoid budening a smaller group with the huge premium increases that would likely ensue. A few years ago I was working for a religious non-profit that got its insurance via participation in a larger non-profit, making us part of a group of about 500. Then my employer decided they could save money by becoming self-insured (a patently ridiculous decision since the market responds to group purchasing power and larger groups are more able to absorb the costs of those who actually need healthcare). Anyway, I became insecure at the mere mention of leaving the larger group, much less becoming self-insured. Not surprisingly, my job was eliminated 6 months into the first year of the employer’s self-insurance adventure. I will never know what relationship my medical costs had to that decision, but I will always be suspicious. (I worked closely with accounting, and it was rumored by the 3rd month to be much more expensive than expected.) The self-insured program lasted 2 years and they bought back into the insurance market, so clearly it was the financial challenge I predicted it would be.

I am fortunate now to be working with a small company based in Colorado. Colorad law does not allow small groups to be rated each year on their use of insurance; instead they can be rated on age, gender, and their federal standard industry code, thus essentially making one group of all small groups in a particular industry. Should this change before the exchanges come online in 2014, I have no doubt we would be given such a major premium increase (my RA plus one other expensive illness in the group) that the company would have to drop coverage.

I look forward to reading your book and following your blog, and I hope you are soon much improved following your latest hospitalization!

Be well,
Annabeth Amerine
@WarmGingerTea on Twitter

DrT said...

Well said and great insight, Laurie. Thank you for posting.

Of note, there is an echo on the provider side of the fence to your comment: "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."

When I was in training, a wise ICU nurse pointed out to me that when the patient becomes critical, the care becomes easier (at least in those days) because the entire focus of care was aimed at keeping the patient breathing and the blood pumping.

We do not do well with chronic disease in health care as most of us trained when the treatment of acute care was the normal. Progress has made this situation better, but I fear that many clinicians tend to over complicate things, egged on by the pharmaceutical companies and the medical device industry which uses heavy advertising to both the providers and the patients to promote their own financial wellness.


Roleend said...

Hello all,

I'm from the Netherlands.
We have a 'social' health-insurance plan that is related to your new health-care plan.
It is not as heavenly good as is told in the USA, but most of the costs are being paid for by the insurance companies.
We have a basic-insurance plan in which most of the normal health-riscs are insured, like meds, GP, hospitalisation (for what ever reason), child birth etc.
Besides the basic plan which is obligatory you can insure yourself for other riscs like eg fysiotherapy or alternative medical treatments via a voluntary extra insuranceplan. And those come in an abumdance of variaties.
The average that we pay anually is €1200. Besides this for all those who work an insurance-payment is deducted from the salary. But the amount of that payment is based on your salary.
All in all it is not a bad way to be insured. The past two years I've visited three neuroligist, two orthopedic doctors, I've had several pain-relieving injections and am currently visiting a specialiced fysiotherapist and as this is a specialist his payments are insured in the basic plan.

I hope that this post is readable because I do speak and write English but a lot of the words I had to use here are not within my normal vocabulary.

Strength to all

Erina said...

Thank you so much for taking the time to write about your experiences.

Do you know someone whose child was denied health insurance coverage due to a pre-existing condition or had a pre-existing condition excluded from coverage? Give them the link to this survey being conducted by The Georgetown University Center for Children and Families. Their answers will help lawmakers figure out how to improve access to healthcare for kids.

Respiratory Insufficiency said...

Thanks for the great work. Many, many thanks.

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