Friday cat blogging: ‘Roid Rage Rampage

July 3rd, 2009

My Senior Veterinary Consultant thinks nobody wants to read about my cat, but I feel obliged to put something up before I go away for the weekend.

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The last time I wrote about Stripes the cat, she was on a massive dose prednisone. This is a steroid familiar to many people with a variety of illnesses, many of whom will know that it can cause siginificant emotional and psychological changes. It’s no different for cats, it turns out.

stripeStripes is becoming a monster. For starters, she eats a ton, and is steadily gaining weight (this is an old photo). But she’s also more aggressive and adventurous. She jumps on top of the tall furniture. She wants to go outside now  - so we bought her a harness and a leash, because we are the weird people in our neighborhood. And most importantly: she has won the alpha-cat struggle. The dethroned incumbent, whom I will call Solid, now mopes around the house with a hangdog “WTF, guys?” expression. How the mighty have fallen.

The other important development in Stripes’s life is that the vet no longer thinks she has FLyPS. I have amended the LickStrong logo to reflect that fact. Of course, the vet  still isn’t sure what’s wrong with Stripes, so there will be more testing.

In the meantime, let’s everyone bask in the irony that I - with my chronic illness - now have a cat who also has a chronic illness. If I had a previous life, I was definitely someone awful. I just can’t imagine who.

“A system that makes absolutely no sense”

July 2nd, 2009

In my my last post, I criticized the National Patient Advocacy Foundation for their reliance on industry sponsorship. That said, I don’t think the people who attended the Patient Congress were necessarily sympathetic to the industry. And as far as I can tell, the highlight was Elizabeth Edwards’s keynote address - which offers a stark contrast to NPAF’s official positions.

You can watch the speech on C-SPAN - it’s 41 minutes long - but here are some key excerpts.

  • “We are trying to find a cure for cancer… we need to find a cure, too, for a health insurance system that leaves too many of us shuddering and in fear. We can - I know we can do this….”
  • “The problem still exists as long as there is a need for the Patient Advocate Foundation.”
  • “We as a society, as a country, need to make sure of something. This is a simple rule, seems to me… that people who are sick get the care they need. It’s just as simple as that.”
  • “About $1100 dollars of what you pay to insure your family goes to cover the uninsured.”
  • “Shame on us for a system that disincentivizes us - sorry for that word - from getting treatment.”
  • “We have created a system that makes absolutely no sense - if the purpose is the delivery of health care.”
  • “We need to create legitimate competition for private insurers…” [she then talks at length about the importance of a public plan in health care reform].
  • “I have had four delicious [sic], incredible children.”

Granted, her main target was insurers - she didn’t say much about pharmaceutical companies. But still, this is a solid speech - much stronger than NPAF’s advocacy platform. It was well-received by the audience, too - standing ovation and all that. The trick for that audience will be to incorporate Edwards’s vision of reform into NPAF’s platform, to make their advocacy better represent what patients need and want from reform.

Will you bite the hand that feeds you?

July 2nd, 2009

If you’re sick and need assistance paying for your bills or fighting your insurer, the Patient Advocate Foundation is one of the best resources out there. They don’t charge for their services and - from what I understand - they are pretty effective.

Last week when I attended the Health Care for American Now! rally in DC, I finished the day in a hotel ballroom listening to physicians talk about the need from strong reform. In that same hotel was the National Patient Advocate Foundation’s 10th Annual Patient Congress. “Wow,” I said to myself, “here I am a patient, and I’ve never heard of this.” The National Patient Advocate Foundation - ‘The Patient’s Voice|Since 1996′- turns out to be the national lobbying arm of PAF. Keep in mind that Patient Advocates are not patients themselves, but people who speak for the patient.

They had a table of literature, and as I leafed through glossy tri-folds, a very congenial man began talking to me about the PAF and everything it does. He assumed I was a physician, so I explained that I was a patient. I told him why I was there and what was going on, and I asked: “What’s NPAF’s stance on health care reform?” He told me NPAF is generally in favor, but wasn’t very specific. “You can read about it online.” I wondered: why can’t the National Patient Advocate Foundation say anything stronger about reform?

And then I saw the big banner behind the information table, listing the sponsors of the event: AmeriSource-Bergen, AmGen, Lilly, Genentech, Novartis, Pfizer, Sanofi-Aventis, Schering-Plough, and US-Oncology. Pharmaceutical companies. It was an “a-ha” moment. I wish I had a photo.

When I got home, I looked up the NPAF’s platform on health care reform: Patient-Centered Health Care Reform Solutions (.pdf). Not surprisingly, it’s a milquetoast statement built on the premise that our current system works pretty well (except for the occasional person who falls through the cracks): “Further, NPAF proposes a vision that embraces both government and private sector financing of health care coverage with subsidies for those without adequate resources and tax incentives for individuals and small businesses.” This is basically the health insurance industry’s proposal for reform; NPAF’s board of directors, by the way, includes an Executive Vice President from UnitedHealth Group, an insurance company.  Moreover, their reform platform says almost nothing about pharmaceuticals; elsewhere, you can read their positions on generic biologics, price negotiation, and prescription drug reimportation - positions which are nearly indistinguishable from those of the pharmaceutical industry.

Point being: I don’t think the NPAF can credibly claim to “The Patient’s Voice” on health care reform. Obviously, their perspective is colored by the money they receive from industry. This isn’t just about NPAF, either - a lot of patient advocacy and disease-specific organizations get funding from industry. For example,  CCFA - check out their corporate partners. And this is probably the main reason why these organizations are not doing much to advocate for health care reform.

If you’re a patient concerned about reform, one thing you can do is contact the advocacy director (the title varies) for any group you are a member of, and ask them to push for reform. Ask the group to commit to what’s right for patients, even at the risk of alienating funders. These groups are too often the pets of industry, and they can’t help us bring about real change unless they’re willing to bite the hand that feeds them.

Smallpox blankets for all

July 1st, 2009

I’m not willing to read as much as Kevin, MD and Whitecoat into this story about the Indian Health Service for one simple reason: Native Americans* have always gotten the shaft in this country.

Yes, the IHS’s record is shameful and embarrassing - and should be fixed immediately. But I’m just as worried about the Obama administration forcing that kind of health care system on all Americans as I am that they’ll wage war against my people, herd us into a reservation, and hand out infected blankets** to keep us warm - which is to say, I’m not worried at all. And if you think this kind of thing is ancient history, read up on the Indian Trust case. The fact that we don’t do right by the Native Americans doesn’t mean we can’t do right - and it certainly doesn’t mean we can’t design a health care system that works for everyone.

In fact, the relevant comparison here isn’t between IHS and white people health care; it’s between IHS and the care provided by the free market. Both Kevin and Whitecoat ignore the fact that “on the poorest reservations … residents cannot afford health insurance.” The market is failing these people - as it is for millions of other Americans - and government is all the help they have. Clearly it’s not help enough, but they’re much better off with IHS than they would be without it. Without it, they’d have no health care at all. Is that what Kevin and Whitecoat are arguing for?

*Just for the record, I am 1/128th Cherokee.

**Granted, it’s not clear the distribution of smallpox-infected blankets ever actually happened.

CER priorities = awesome

July 1st, 2009

The Institutes of Medicine just published its list of 100 priorities (.pdf) for comparative effectiveness research, the result of a process that began earlier this year with an online questionnaire and public hearings.

Among the top 25 items - ie, the highest priority - were the following:

  • Compare the effectiveness of dissemination and translation techniques to facilitate the use of CER by patients, clinicians, payers, and others.
  • Compare the effectiveness of comprehensive care coordination programs, such as the medical home, and usual care in managing children and adults with severe chronic disease, especially in populations with known health disparities.
  • Compare the effectiveness of different strategies of introducing biologics into the treatment algorithm for inflammatory diseases, including Crohn’s disease, ulcerative colitis, rheumatoid arthritis, and psoriatic arthritis.

It’s like they read my mind - but they didn’t have to, because I filled out the questionnaire and suggested all three of these. I’m sure several other people made similar suggestions, too - so it wasn’t all me. But still, it’s good to see that they’re going to spend some of the $1.1 billion for CER on questions that I want to know the answers to.

Patients for a Moment #2

July 1st, 2009

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Welcome to the second-ever installment of Patients for a Moment - the blog carnival for, by, and about patients. Lots of great posts this time, which I will tarnish with gratuitous commentary:

We start with a hefty dose of inspiration: Jenny at ChronicBabe writes that Everything is brand new and waiting for you… and the chance to help you feel better - a post prompted by the marvel of a friend’s baby. Incidentally, and this may not be coincidence at all, her post title almost works as a lyric to James Brown’s Get Up Offa That Thing.

Kairol at Everything Changes asks, Are You Annoying Your Doctors? Meow that’s an interesting question.

Barbara at Florence Dot Com has a post titled, Meaningful Use: Your prescription shouldn’t have to look like this - about prescription safety, and some ideas on how it can be improved. Barbara’s site is focused mostly on patient safety, and it’s a great resource for patients looking to keep themselves safe.

Laurie at A Chronic Dose posts her Musings at the One-Year Mark - a reflection on the anniversary of publication of her book, Life Disrupted. She writes about her gratitude for all that she has learned from the many patients who have contacted her since.

Aviva at  Sick Momma asks, What’s In A Name? Her post is about the disrespect some diagnoses are treated with by both medical professionals and “regular” people. I tell “regular” people I have cancer; that shuts ‘em up. Doesn’t work with medicals, though.

Dave at Daved and Infused (a great blog name, by the way) offers Lessons - a reflection on the sense of hope and optimism a brief remission can give, only to be shattered by relapse of the disease.

Reality Rounds writes Me Nurse Pretty One Day, about the story that some Czech hospitals are offering free breast implants as a perk for their nurses. RR, for some reasons, seems to think that’s a silly idea.

Rachel at Tales of My Thirties posts Action Item: Anxiety. “Living in constant fear is no way to live.  Trust me on that one.”

Lisa at Brass and Ivory writes a touching post titled Love, Intimacy, and All that Jazz. I don’t know who Rob is, but I think Lisa is lucky that she does.

Leslie at Getting Closer to Myself tries to live a full life, meanwhile butting heads with a doctor who thinks she should take it easy. Her post is titled Let’s Talk About It, Talk About It, Talk About It.

Katherine at After Cancer, Now What? offers her Reflections on a Cancer Survivor Summit. She points out that clinical trials have a bad rep, which is true. I will say, however, that I have participated in three clinical trials over the years, and they were all worth it.

Steve at Adventures of a Funky Heart sends in The Heart of a Warrior: A Funky Heart Interview - a conversation with a particularly perserverant patient.

Sara at Single Girl’s Guide to RA calls RA the Loser Disease. -Ahem- I normally don’t like to get into this sort of thing, but I might point out that RA would have to be very loserish indeed to be more of a loser disease than IBD. I’m just saying: we poo. A lot. If you want to weigh in with your loser disease, drop a comment on Sara’s blog.

And finally, since this a nice summation of why we do it like we do it, Dr. Rob at Musings of a Distractible Mind writes about Why Blogging Matters: “Blogging matters because it gives perspective that could never come from anywhere else.  Blogging is the journalistic equivalent of democracy, giving the average person a chance to make their voice heard.”

Thanks for giving me the chance to make your voice heard. I want to do this again on July 15, with a submission deadline of July 12th. I’ve been a little busy lately, so haven’t had a chance to put together a calendar, but my hope is that after July 15th this will start rotating among patient blogs. In the meantime, be well.

Anything but that

July 1st, 2009

From the “Please God No” file comes this NY Times article:

A federal advisory panel voted narrowly on Tuesday to recommend a ban on Percocet and Vicodin, two of the most popular prescription painkillers in the world, because of their effects on the liver.

Vicodin saved my life, among other uses.  I haven’t used it in months, but I would still regard a ban as deeply problematic - and not just because it would rob House, MD of a key plot device.

Vicodin is part hydrocodone - a narcotic pain-reliever - and part acetaminophen - aka Tylenol. This combination has been linked to several deaths from liver failure. The irony is that the deaths aren’t due to the hydrocodone; instead, it’s the acetaminophen - the Tylenol - that causes liver failure in high doses. That’s what’s killing people, and ostensibly why the FDA voted to ban it. Of course, the FDA isn’t voting to ban over-the-counter acetaminophen products.

The problem for anyone with pain is that hydrocodone is the safer half of Vicodin, but it isn’t sold as a stand-alone drug. So banning Vicodin would mean de facto ban on hydrocodone based pain-relievers - leaving a lot of people without a safe and useful drug. As far as I know, there’s nothing comparable in strength to Vicodin, so the only place for these patients to go is for even stronger drugs like hydromorphone (ie. Dilaudid).

I’d be interested to hear from medical professionals if I have any of this wrong. In the meantime, I’m holding on to my left-overs. Maybe someday they will be collectors items, but I might need them before then.

Moral hazard revisited (my blogonym explained)

June 30th, 2009

Kevin, MD has a reader take from an anonymous medical student:

One of the ideas that comes up in the search for explanations of high healthcare costs is the so-called “Moral Hazard”—the idea that insured patients are more likely to agree to unnecessary procedures because they don’t pay for them directly. Not everyone thinks it is real [...] Recently, I’ve become convinced that the Moral Hazard does exist. I’ve seen it with my own eyes.

You should know that moral hazard only comes up in ideologically-driven explanations of high healthcare costs; the phrase serves mostly as an appeal to economics to justify forcing sick people to pay more for their care. In a post titled, The Myth of Moral Hazard, I argued against such explanations.

AMS provides as an example of moral hazard an anecdote from a geneticist’s practice, where a patient gets a test that does nothing but confirm a diagnosis. AMS argues that because certainty isn’t medically necessary, this test was ultimately a waste of money - an example of moral hazard. The problem is that AMS doesn’t offer any evidence that the patient wouldn’t otherwise pay for the test herself. And I would bet dollars to doughnuts he would.

Here’s why: Crohn’s disease has a strong genetic component, but nobody else in my family has it. I am the ‘lucky’ one. And the fact that I was switched at birth may have something to do with that.

As the story goes, I was only switched briefly. While still in the hospital, my mother was handed the wrong baby. She soon realized the mistake, and shouted “Wrong-g-g-g-g Bay-y-y-y-be-e-e-e-e” at the top of her lungs. The nurses moved like the place was on fire, and brought her the right baby. I don’t know how they knew which baby was which, apart from the name bracelets, but it has occured to me that the bracelets might have been on the wrong babies.

My mom says she knows I was the right baby, too, and I accept that. But still: there is a chance that I am the wrong baby. It’s a very, very slim chance - one in a thousand, maybe - but enough to make me uncertain about my family medical history. Maybe Crohn’s is more rampant in my family than I think. And that uncertainty bothers me - not a lot, but enough that I would pay to resolve it. If I could get my mother’s consent without upsetting her, I would easily pay $300 just to find out for sure, and maybe as much as $500. I would pay a lot more if I were planning on having kids of my own - even though it has no bearing on whether they will get the disease. I would pay, just to be certain. And I would bet the same was true of AMS’s patient.

Even if I am wrong - if the patient would not have paid for the test - AMS presents a very weak argument for moral hazard being a problem in the system. By the same logic, I could argue that not putting lead aprons on x-ray subjects is a serious problem in health care, simply because it happened to me one time. I’ve seen it with my own eyes. The myth of moral hazard isn’t that it never happens; AMS will likely run into many more equally trivial examples in his career. Rather, the myth is that ‘fixing’ moral hazard - i.e. making sick people pay more for their care - will fix the health care system.

And for those wondering: the wrong baby’s last name was Cross. If your last name really is Cross, and you were born in Sarasota, and you’re the only one in your family without Crohn’s disease: please email me right now.

Grand Rounds is up

June 30th, 2009

Grand Rounds is up at EdwinLeap.com. Thanks to Dr. Leap for hosting this week.

The clinical and the social

June 28th, 2009

I think themes for Grand Rounds is a bad idea, but Edwin Leap’s question - “What would you like to say to future physicians?” - is one I have thought about prior. So, imagine you are a graduating medical student, and I am your fabulously well-paid commencement speaker*:

Hello Class of [insert year]. Congratulations on this very special day. If you think your parents are excited for you, wait till you hear from your lenders. I don’t envy you that.

Nor do I envy you the effort you have had to expend to get here. You must be tired. I will be brief.

Your education and training puts you in the elite of knowledge-based professions. In this increasingly knowledge-driven economy, you are drawing ever closer to the peak. Your skills are invaluable to society; your expertise essential to civilized life. Without you or people like you, our society would literally fall apart. You can expect - and you will command - tremendous respect for your achievements  and accomplishments thus far.

There are, however, different kinds of knowledge. You have been trained in the clinical, and nobody in their right mind will question your qualifications of clinical issues. Which isn’t to say you won’t be questioned; there’s always Jenny McCarthy, whose most valuable contribution to civilization was sucking the chrome off a trailer hitch in “BASEketball“.

But the people who come to see  you: they will come because your knowledge can help them. Many of them will depend on you - their lives will depend on you - to use your knowledge to solve a problem they face. Diseases. Injuries. Disabilities. And I trust you will excel in this task.

The vast majority of problems you will see have a simple, straightforward remedy. Antibiotics for strep. A cast for a broken bone. Stitches for a deep cut. A band-aid and reassurance for a worried parent.

And the people you see - the people you help - will be tremendously grateful to you. You will have their thanks, and their respect, and no small amount of their money. (Someone will get the money, anyway - even if your share seems too small.) And they will leave the clinic and go back to their homes, to their lives, to their worlds.

For a few of your patients, your knowledge won’t be enough. You won’t know how to cure Huntington’s disease. You won’t know how to cure MS, or RA, or IBD, or any of dozens of illnesses still baffling medical science. For people with these diseases, your knowledge won’t be enough. You won’t have the knowledge necessary to send them back to their lives. Nobody does. That’s something you - and they - will have to learn to live with, for the time being. Their problems will be ongoing, and will cost these people tremendously - in money, in time, in tears, sweat, blood.

Many of them will die from their illnesses. And I am sorry you will have to be party to that. Don’t torture yourself if you didn’t know enough to save them. Just don’t stop learning.

In the meantime, the fact that their illnesses persist means they will face a myriad of additional problems. These problems are not clinical. They are beyond your training and expertise.

To take an example from my own life: shortly after I graduated from college, I was in the middle of a mild flare of my disease. I was functional, I could work, but I looked sick. And as I interviewed for jobs - I was well-qualified - it was obvious that I was sick. And nobody would hire me. Which meant I could not get health insurance. These problems affected my clinical situation - I volunteered for clinical trials, as a way to get health care - but they were not simply clinical problems.

Your patients will face stigma. They will struggle through routine, daily tasks. They will have difficulty working. They will have difficulty paying you to help them. They will face emotional stress and pain well beyond what their physical condition might suggest. Spouses and loved ones will reject and abandon them.

Many of them will face these struggles utterly alone. And they will bring their lives into your clinic. You will be sorely tempted to ignore these problems, or to minimize them, but you should not.

You are right to think that these are not “your problems”, because they are not clinical problems. They are not the problems you have been trained to address. We might call them instead “social problems” - to capture in a broad stroke what is economic, emotional, relational, and political about being ill. Disease may be a clinical problem at root, but illness in full bloom is very much a social problem.

Just as there is clinical knowledge - and you are its vanguard - so there is social knowledge. Many of you - thank God - have an aptitude for social knowledge, but you are not experts. In fact, precious few people are. Most of your patients - the ones who need your help the most - will not have access to anyone will the sort of social-knowledge expertise that might help them.

So they will face a host of problems for which there is no “doctor”. And some of these social problems will be more pernicious than disease itself. Some of these problems will be every bit as disabling as their diagnosis.

As experts in clinical knowledge, you are taught to narrow problems down to a single point. It’s not enough to treat every skin problem the same, nor every skin cancer the same. You instead narrow the problem down to a single point - basal cell carcinoma, perhaps - and that is the problem you solve. Yes, I am oversimplifying - but a great many of the problems you have been trained to solve are like this.

Social problems are not like this. They do not exist at a single point. They are often vast and nebulous, in defiance of any attempt to narrow or simplify them. They are often “wicked”, in the technical sense - you think you’re solving one problem, and create three others.

I am not saying you should shy away from these problems. I am warning you: they are much tougher than anything you are trained for. I want you to be engaged and interested in how your patients live outside the clinic, but if you think you have found a simple, single solution to their problems, you are wrong. You are applying clinical knowledge to social problems, and at best you will not help your patients. At worst, you will harm them, perhaps grievously.

(And by the way, you will never be sued or punished for this sort of mistake , as you might be for clinical mistakes. There are doctors who destroy their patients with clinical solutions to social problems, without ever realizing what they are doing. I have survived two of them myself.)

To offer a possibly controversial example on a large scale: we are in the midst of a debate over health care reform, with physicians tending towards either pole. On on side, there are physicians who vehemently insist that the market is the solution to our health care problems, as if “the market” were a pill dispensed by your local economist that we could all take. On the other side, there are physicians who vociferously push for a single-payer overhaul - as if we could simply anaesthetize our health-care system, wheel it into the OR, and emerge a few hours later with single-payer. This is clinical thinking, applied to social problems.

Neither one has much chance of working, at least not in the ways their physician supporters expect. It takes social knowledge to appreciate that fact.

But even if you don’t know much about social problems, you can always learn. There are ways to train people to be experts in social knowledge. You have likely received minimal, if any, training in the social problems surrounding disease, and for that I am sorry. I wish it were otherwise, but perhaps the clinical was already demanding enough.

In all likelihood, you will learn most of your social knowledge on your own. One of your best resources - apart from here and now - is, of course, your patients. Listen to them. Talk to them. Ask them about their lives. Ask them how you can help. As you learn, do not be too quick to arrive at your conclusions.

Whatever else you do, please do not assume that your expertise lends itself to social knowledge. When you step through the clinic doors into the realm of the social, you have just as much to learn as the rest of us. You are just as unqualified as anyone else.

Rest assured: you can spend your entire career in ignorance of the social problems your patients face, and still be a very fine doctor by the standards of your field. You may choose to ignore those problems and focus exclusively on clinical problems - and many of you probably will. But if you are among them, for Pete’s sake, don’t pretend you are doing anything more.

A few of you will attempt to balance social and clinical knowledge, and your reputation as a clinician will likely suffer. But the payoff is this: if you succeed, if you come to appreciate the social problems patients face even half as much as you understand their clinical problems, you will have the ability to help millions of people. It goes without saying that you will not see most of these people in your clinic, but your knowledge will have tremendous potential to transform their lives for the better - in fact, to transform society for the better.

In either case, you first must learn to recognize the difference between the clinical and social. If you cannot do that, you might well be a help to your patients, but you will never - never - be the help they need.

Again, congratulations - and good luck.

*Attention medical schools: it is in fact possible for you to live out this fantasy, and my definition of “fabulously well-paid” is really quite modest. Email me.