But there’s a dilemma: policymakers want to foster cost-saving competition without killing the financial incentives that have put the U.S. biotechnology industry at the vanguard of medical science and without stifling the development of even more drugs that could save lives and eliminate suffering. Finding that equilibrium goes to the question of how long biotech firms should be guaranteed exclusivity, outside the protection of their patents, before copycats can begin using the data they have developed.

This is a somewhat misleading way of framing the dynamic. On the one hand, yes – patents guarantee profits, which spurs companies to innovate. But their innovations are not necessarily a net benefit to social welfare. Take the example of Remicade, J&J’s blockbuster biologic for Crohn’s, RA, psoriasis, etc. It made billions of dollars for the company, and led other companies to innovate new drugs, eg. Humira, Enbrel, Cimzia. Even though the new drugs are technically new, they all use the same basic mechanism; they’re all anti-TNF-α antibodies, which means they all work about the same and have about the same risks.

Biomedicine is so complex that each company can create a drug just different enough from the others to be awarded a patent, which protects them from generics and guarantees their ability to demand high prices. Then they market the drug to patients and doctors as if it’s the latest and the greatest. So the drugs all have patents, they are all expensive, and they all do pretty much the same thing: how is this situation better for consumers than were generics made legal? It’s not, as far as I can tell.

Moreover, the same companies ignored or abandoned promising research in other biologic and non-biologic therapies, and focused on the guaranteed profits from anti-TNF-α. If you can’t get TSO or J695 or LDN for your Crohn’s, it’s because there’s sure money in anti-TNF-α. Other drugs are slightly more risky from a financial perspective, even if they might ultimately be better for patients. There’s every reason to think that if we guarantee profits in biologics, that’s what we’re going to get. There’s no reason to think we’ve exhausted the possibilities of conventional therapies for most diseases, and biologics bring a whole new profile of side effects and risks that we are still learning about.

Second, there’s this bit:

That means it can be hard to find a truly independent viewpoint, though it often requires deep digging into the finances of advocacy groups to discover their ties. In July, one calling itself the National Health Council wrote letters to members of Congress “on behalf of 133 million Americans” asking for a minimum of 10 years of data exclusivity. The group boasts a membership that includes 50 of the nation’s largest patient-advocacy groups, including the American Cancer Society, Easter Seals and the National Kidney Foundation. But its board of directors reads like a Who’s Who of top pharmaceutical executives from Amgen, Pfizer, Novartis and Bristol Myers Squibb. Its 2007 tax filings show that almost half its $2.3 million budget came from PhRMA and drug companies.

This also means that when the ACS, Easter Seals, and Kidney Foundation talk about health reform – if ever – they do it with influence from the pharmaceutical industry. (Along the same lines, you might re-read this post about the National Patient Advocacy Foundation.) Which is to say, we can’t really trust advocacy organizations to speak solely for our interests of patients. Virtually all of them get money from pharmaceutical companies, and for many that is the largest source of funding. Many of them include pharmaceutical executives on their boards or advisory councils.

It is entirely likely that you will more for your medicine – a lot more – because your organizations were unable to stand up to Pharma. This is why it’s so important that patients speak up, make themselves heard, and don’t wait for their disease’s organizations to do it for them. They won’t. They can’t.

CT luteography Re (1) SIP (R) ileocutey colectry (2) Aolum’s dreal

I am pretty sure “Aolum’s dreal” is supposed to be “Crohn’s disease”. I googled “luteography”, but got no hits. I’m not even going to try to translate the rest of it, since I won’t be going back to that doctor and am certainly not going to follow his orders. If anyone else wants to take a crack at translating, be my guest.

Instead of getting new tests, I decided it would be easier to get the records from my old tests – especially that colonoscopy. Fortunately, most of my doctors and surgeons are part of a single large practice associated with a teaching hospital, which has a single, centralized records department. I filled out a form, and twenty minutes later the records clerk handed me about 250 pages of medical records printed out from their computers.

I sat down with the records and browsed through them, making sure they were intact. First, I noticed that none of my dermatologist’s records had been included. Not a big deal, but still annoying.

Then I found the one thing I really needed from that stack of paper: the report from my last colonoscopy, way back in 2007. And it was illegible. The only thing you can get from the document is that it’s a colonoscopy report – the results, findings, and everything else are all illegible. It’s one thing for a prescription to be illegible, but this at one point a type-written document. It’s like they ran it through a “doctor’s handwriting” filter in Photoshop, just to make it useless.

I showed the copy to the clerk, and asked her to print out a clear copy. “That’s how it is on the computer,” she said. “I can print out copies all day, they’ll all look the same.” The file she had was from a scan of the original. She said I needed to go to the surgeon’s office for the original, where they had scanned it into the file system.

I went to the surgeon’s office, and explained my problem. “We shred those. They have the original at the outpatient hospital”. The document had been printed at the outpatient hospital where the procedure was done, copied, then mailed to the surgeon’s office – where it was scanned. I went back to my office and called the outpatient hospital. “They keep those records at the main hospital”. I called the main hospital. “Those records would be at your surgeon’s office.”

So, that was two hours wasted. I’m still no closer to having a good copy of the original report, which means I’ll have nothing to show the next doctor. And lacking that information, the new doctor will inevitably order a new colonoscopy, which will cost me a couple days of my time and run my insurance company several thousand dollars.

I know that we have the best health care system in the world and all that, but can anyone explain to me why it is that our records-keeping system is still stuck in the early 1990s?

With the deeply personal debate on health care and its associated reform costs, our need for honesty and successful policy to save our country is suddenly more important to us than the comfort of bedtime stories. This is political maturity.

[...]

We are now (as voters) in a position to demand that legislation (including I daresay health-care reform) occur in incremental, transparent, understandable terms that voting citizens can vet themselves. Not thousands of pages of nearly incomprehensible gobbledygook.

The reason we are in this position, says Dr. Wes, “is transparency because of the internet”. Yes, the Internet: source of so much that is honest and transparent in this debate. The fact is that most people support health care reform, when they understand what is involved. What’s driving the opposition is mostly a bogus caricature they read about largely on the Internet – a caricature Dr. Wes has abetted.

This isn’t to deny the Internet’s potential for change. But that change might not be as beneficial as Dr. Wes thinks. Bear in mind that the same process is occurring in medicine: millions of patients are now turning to the Internet for information about their illnesses. Does Dr. Wes think the information online is better or worse than what a doctor might provide? And why would information about government and politics be any better?

My guess is the Internet will change medicine sooner than government. I can decide, on a day-to-day basis, whether I want to go online or go to a doctor. For better or worse, a single voter – even a majority of voters – can’t change the Constitution. And contrary to Dr. Wes’s assertions, our founders specifically denied voters the capacity to ‘vet’ legislation: they created a whole branch of government, the judiciary, to do so instead. So Congress doesn’t and won’t write  laws for voters; it writes them for the lawyers and judges who figure out what laws mean.

Thus, what Dr. Wes calls ‘thousands of pages of gobbledygook’ is in fact 1018 pages designed to convey the intent of Congress as accurately as possible. Consider that the Americans with Disabilities Act, for example, was steadily diminished in its protections by questions over the meaning of one phrase – “major life activity” – so much that Congress had to pass a second law, ADA Restoration, reaffirming its original meaning. Or that proper interpretation of the Second Amendment – the right to bear arms – depends entirely on two commas. Love it or hate it, that’s our Constitution. Can an ordinary citizen make sense of it? Perhaps not. But can an ordinary citizen make sense of a medical journal article? Just because it’s ‘gobbledygook’ doesn’t mean it’s not purposeful and important.

Granted, I think our government will adapt, sooner or later. The machinery of our governance is based on 18th century technology; small wonder it has difficulty operating in the Information Age. Eventually, the divergence between government and society will have to be reconciled, but who knows how that process will unfold? Consider that California is right now in the throes of a crisis generated by too much direct participation by voters. Do we want that for the nation as a whole?

But just as government will change, so will medicine. Too many physicians adopt an archaic mindset that regards their patients as subordinates and supplicants. In fact, Dr. Wes argued at Putting Patients First that physicians should tell their patients to oppose health care reform – as if patients were theirs to boss around. This is a pre-Internet mindset.

For lots of patients, the Internet has been liberating. It connects us with other patients and resources, as well as information that helps us understand our diseases. No longer is the doctor the only or even principal source of information. Some of that information is bogus, some is invaluable – but right or wrong, access to that information puts patients in a position to demand that physicians talk to us in transparent, understandable terms, with treatments we can vet ourselves. Anything short of that is unacceptable.

To appropriate Dr. Wes’s rhetoric, it’s time for a new kind of medicine. I think – I hope – health care reform will help bring about that new kind of medicine. Dr. Wes is arguing against it, because he prefers the old kind of medicine. But this is the Internet: you are free to make up your own mind.

(Photo from flickr user robwallace under a CC license.)

I woke up this morning and realized that my COBRA payment is due, and even if I get it to the mail today, it won’t arrive until early next week. ADP, the company that processes my premiums, has a long history of cutting me off if my payment isn’t received on the first of the month precisely, so I decided to use their web portal again.

The bill ADP mails me with their premium no longer includes any information about online payment, oddly enough. So I had to go fishing in Google, and I got the wrong website. For a few minutes, I kept getting “no such user” in response to my attempts to log-in. This was only slightly less frustrating when I realized it was their “Flexible Savings Account” website, which is totally different from their benefits website except that it looks almost exactly the same.

Back to Google, where I then found the right website. I tried entering my name and password, and it told me: “Your password has expired”. There was no option to reset my password or log-in under a different password. I then tried “Forgot my password” – which did nothing but boot me out to the log-in page again. Then I remembered the website doesn’t work with Firefox (or Safari, apparently).

I switched on a Windows laptop and fired up Internet Explorer, then found the website. My password was still expired, so I clicked “forgot password”. This time it gave me a security question: “What is your pet’s name?” I tried one pet. Denied. I tried another. Denied. I tried both pets’ names. Locked out. The website told me to “Please contact ADP directly”, so I clicked on the link. The resultant page told me to “consult your premium documents for information on contacting ADP”. So – forty-five minutes of my day, and I am now literally back at page one of the process.

I found ADP’s number and called, not very optimistic I would get anywhere at 7:00 AM. I listened to their menus and 1′d and #’d my way through until I was listening to a recorded voice read out my payments for the last five months. “Your payment of. Four. Hundred. Forty. Two. Dollars. And. Fifty. Nine. Cents. was received on. July. Third. Your payment of. Four. Hundred. Forty. Two. Dollars. And….” Since this was clearly not helping, I pressed “0″ – even though the menu had never offered me that option. It worked – sort of. I got connected to recording that said “please call back during normal business hours” – and hung up on me. I saw that coming, at least. I will try again later.

In the meantime, I am declaring myself ‘off-limits’ to any and all arguments about the relative merits of the free market in health care. Normally, I try to be a little bit charitable and reasonable in such matters, but not today. I have given an hour of my life to the vicissitudes of the market, and it has gotten me nowhere and nothing. And I would point out: there are plenty of people who want our entire health care system to work this way. I’m not buying it – and today, I’m not even willing to listen to it.

]]> http://duncancross.net/2009/07/revenge-of-cobra/feed/ 2 http://duncancross.net/2009/07/questions-for-the-specialists-panel/ http://duncancross.net/2009/07/questions-for-the-specialists-panel/#comments Thu, 16 Jul 2009 13:43:25 +0000 dx http://duncancross.net/?p=1874 Tomorrow’s the big day: they’ll be “Putting Patients First” at the National Press Club. The last panel of the event is on specialist care; it includes Dr. Rich from Covert Rationing, Dr. Wes, and Kim from Emergiblog (yay, nurses!). This, then, is my final set of questions:

1) Since I know the answer to all my questions is “malpractice reform”, let’s start there. Four years ago, then-Senators Clinton and Obama co-sponsored a bill to revamp medical malpractice, giving physicians and patients a way to avoid the tort system. Under the bill, physicians were encouraged to be more open about disclosing and preventing errors, and in return they would face less risk of a high jury verdict against them. Of course, that bill died in the (Republican-run) committee. For all the talk about the importance of malpractice reform, why weren’t more physicians (and physicians’ advocacy groups) supportive of that effort? Would you support a similar effort as part of the current health care reform?

2) Advances in medical technology are driving a lot of of the cost of health care, especially the sorts of technology associated with specialist and hospital care. Other than malpractice reform, what specific steps can specialists – as a profession, or as individuals – take to be more judicious in their use of expensive technologies? Would specialist physicians be capable of self-regulating their use of such treatments, if that meant avoiding government-set guidelines?

3) Many proposals for reform call for strengthening primary care so as to reduce patients’ reliance on specialist care. Is that a zero-sum game? Is it possible to strengthen primary care without taking patients and money away from specialist care? Can you accept a loss of revenue if it’s best for patients? And are these proposals best for patients?

On this last question, it would be interesting to see the primary and specialist panels engage in a dialogue about this. I know it is a somewhat tense question, and has occasionally sparked minor flare-ups elsewhere. I am sure these panelist would be much more inclined to remain civil and candid on the subject.

Anyway, more questions to think about. Those of you attending the event, I will see you there.  Check my About page for a photo – more like a gestalt, but it should help you figure out who I am.

Health information technology offers great promise to patients. Patients can access their medical information online, communicate with doctors by email, schedule appointments through the web and take advantage of numerous tools to manage their own illnesses. They can become equal partners in their care.

I agree, of course. I do worry that many doctors see health IT as a threat to their profession, rather than a boon to their patients, but props to Drs. Mohan and Moore for arguing the latter.

For the average healthcare consumer, the message is to act now on obtaining their health information and keeping it in an electronic format to be shared with all providers who treat you. The personal health record (PHR) is not a substitute for the EHR, but it does fill a gap.

Has anyone done this, or even tried? It’s a great idea in abstract, but the practical task of inputting all the scraps of paper that make up my medical record is a wee bit daunting. And, of course, Ruthann has no technical advice as to how one might go about doing this.

I do keep a document on my computer with basic med information – a brief history, current scrips, physician contact info, allergies, and so on – to print out when I have to go the hospital or a new doctor. If there’s a happy medium between that and scanning in every piece of paper I own, I’m having trouble finding it.

“I think the real problem is that the info may not be all that useful,” said Dr. Wendy Mariner, a law professor and director of the Patients’ Rights Program at Boston University. “Patients may be able to evaluate whether a physician is responsive, courteous, on time, provides useful info to the patient,” she said, but they cannot judge the most important issues concerning medical care.

I’ve already said that being responsive, courteous, on time, and useful are essential medical skills; this isn’t up for discussion. Instead, I want to ask a (rhetorical) question of Dr. Mariner: where does she think patients are currently getting their information?

Odds are, she hasn’t thought about it at all. If she did, she’d realize that patients get much of their information through fairly limited social channels – basically, their close friends and family. And what do those friends and family talk about? Among other things, whether a doctor is responsive, courteous, on time, and provides useful information. So, basically the same things they would be getting from the internet – only on a much smaller scale. The average patient probably has very few people they’re willing to talk to about their health, few of whom are likely to have any relevant experience.

So when a would-be patient goes looking for a health care provider, the pool of available information is small, if not zero. Even if they already have a PCP, that doctor probably doesn’t know whether his colleagues are responsive, courteous, on time, and useful. An example: when I was in college, I was referred by my PCP to the head of the med schools gastro department, on the rationale that she knew absolutely everything about gastrointestinal disease. Maybe so, but she was also unresponsive, rude, impossible to get time with, and not the least bit helpful. She was, in fact, a terrible doctor. I’ve said this before, but again: the choice isn’t between good information and bad, but between marginal information and none.

Which brings us back to online rating tools. These tools in theory simply expand the network across which patients can search for information. Of course, none of these tools are even close to being fully realized, and most of them are crap. Here’s a fairly thorough study of online physician review tools, and Trish Torrey has a series of posts you should read if you plan to use them – including a helpful online review of online reviewing sites. (In fact, Trish’s whole site is quite helpful.) I agree with a lot of what Trish says about online review sites, but not her bottom line:

But if you’re doing research to find Dr. Right for yourself or a loved one? Skip them. We have no way of knowing how accurate the information is.

I would say instead: use with extreme prejudice. Trish is right that we have no objective way of knowing their accuracy – but nor do we know how accurate our doctors’ and friends’ information is. We usually trust doctors and friends on these sorts of things, but that’s a subjective assessment – and we can form subjective opinions about online reviews almost as easily, if we know what cues to look for.

The first cue to look for is the number of reviews there are for a given subject. For example, there are 792 reviews for Joseph Heller’s Catch-22 on Amazon; there are only 2 reviews for Catch-22 on Google books. You can get a good idea from Amazon whether the book is worth reading, but if all you had to go on were the two Google reviews, you’d have to accept a bit of risk before picking it up, or else look for more information. So far, medical review sites tend to have very few reviews per doctor – if the doctor has any reviews at all. Suffice to say that you shouldn’t base your medical decisions on a single review online, but that one review can still supplement information found elsewhere.

The second cue is the structure of the review. If you’ve read a Google review of anything, you know they tend to be awful. Partly, this is because Google reviews tend to be formless and bereft of context. Amazon reviews also tend to be formless, but Amazon provides tools for customers to rate reviews – which helps improve the reviews. There are many people on Amazon who devote significant energy to their reviews and their reputations as top reviewers. Angie’s List (I am a member) imposes a specific and comprehensive structure on its reviews. You simply can’t write a half-assed, half-cocked review on their site; they will call you to talk about it. As a result, Angie’s List reviews tend to be very helpful – even when there’s only a one or two.

The third cue is the content of the review. Well-written, specific, and thorough reviews are helpful; hasty and sloppy reviews are not. By now most of us have seen an email or blog comment full of misspellings, grammar errors, and epithets – and we know enough to ignore it. Even a well-written but exceedingly negative review ought to sound a bell, if only for potential bias. For the most part, this isn’t rocket science: you probably have all the discretion you need to sort good from bad. You just need to use that discretion vigorously, so have ready plenty of grains of salt.

As I’ve said, a lot of these tools are crap. Yet some of them will mature into useful resources for patients. We should be welcoming that process, and helping it along. If you’re a patient, find a site that works for you, and write for it. Write to be useful to other patients – not for your own catharsis – keeping in mind the sorts of cues you’re sending. If you’re a doctor, encourage your patients to share their feedback – both with you and each other. If you run one of these sites, think about what information is useful to patients, and make sure it’s in your reviews. A good start would be whether the doctor is responsive, courteous, on time, and provides useful information – but by now, you already know that.

One last thing: anonymity. Some of the comments to the linked stories decry the anonymity patients have in writing these reviews. Unfortunately, anonymity is necessary to ensure quality of the reviews. Very few patients are willing to share specific information about their medical needs online; taking away anonymity won’t improve the reviews. Sure, the reviews might be more flattering to doctors, but no more helpful to patients.

So: read online reviews cautiously. Write online reviews carefully. And meanwhile, look forward to the near future, when online, patient-generated information about medical providers will be both abundant and reliable.

The interview is worth watching in full, but I want to point out one thread in their discussion. I’ve hacked out a rough transcript; John Stewart has asked Dr. Varmus about the line on curing cancer in President Obama’s speech to Congress, so (around 2:30 in the clip) they’re talking about cancer:

Varmus: …paying attention to cancer is important, but as you know from having a few moments looking at my book, one of the problems…

Stewart: …You talked about when you were at the National Institutes of Health, you were like a bouncer for disease. People would come to you and say, ‘We need AIDS funding’, and you would have to pay for it from cancer funding, and they would be upset – it’s a very perilous situation.

Varmus: This is all understandable, but what people need to understand – I think actually, the President could be helpful in making people understand – is that some of the most important advances come from the part of medical science that nobody’s an advocate for: doing basic science, learning how things work. We have a genome project – that came out of work with bacteria and bacterial viruses, basic chemistry, and other things that don’t have advocacy groups. You know, it would be a mistake if the NIH were not working on all the major diseases, but you don’t want the disease advocates warring with each other…

I won’t claim to know this issue as well as Dr. Varmus, but I have to say: it bothers me that the various charities and advocacy groups are all competing (warring, perhaps?) for the same limited pool of resources. The result is that money goes not to the sickest people, the most widespread disease, or to the most promising research, but to whatever group can organize and mobilize best. Since the people who are best able to do that tend to be those with the most resources already, the result is a slightly perverse set of priorities for disease research. (And nevermind the fact that “research” itself tends to privilege those who can afford expensive medicines over those who can’t.)

So I was glad to hear Dr. Varmus pointing out the importance of basic research, and advocating for a broader understanding of medical science. I hope he’s right – I hope President Obama can help people understand medical science a little better. I also hope that health care reform will help reorient our priorities and mitigate some of the disparities that advocacy groups tend to perpetuate, if not create. But in the meantime, it’s good to hear Dr. Varmus talking about these things.

]]> http://duncancross.net/2009/03/bouncer-for-disease/feed/ 0 http://duncancross.net/2009/03/silent-treatment/ http://duncancross.net/2009/03/silent-treatment/#comments Tue, 03 Mar 2009 14:24:51 +0000 dx http://duncancross.net/?p=1031 In this recent post, I concluded that health care comparison tools aren’t very useful to patients: “It’s not that we don’t want the information: we do. It’s just not there.”

The main reason the information is so spotty is that the medical profession has a vested interest in avoiding that sort of transparency. Maybe part of this is due to fear of lawsuits, but a substantial part of it is simply the anti-competitive tendencies of the medical establishment.

As further evidence, some doctors are requiring their patients to sign waivers promising not to post online reviews:

Consumer-oriented Web sites like RateMDs and Vitals.com give Web users a chance to recommend and review physicians and hospitals nationwide. But some doctors now are telling their patients to censor themselves — or find another physician. [...]

Dr. Jeffrey Segal, a former neurosurgeon who founded Medical Justice to help doctors fight off lawsuits, said he robustly supports the sites in theory, but in practice they aren’t properly monitored and can do irreparable harm to a doctor’s reputation — especially when people pretending to be former patients write phony reviews.

Note the extremely patronizing attitude beneath this argument. People have been writing online reviews of nearly every other industry for at least a decade – books, hotels, restaurants, movies, computer products, car repair, and so on. I suspect most people who use these reviews regularly have a pretty solid understanding of which reviews are bogus and which are reliable. But Dr. Segal still thinks patients are too dumb to know the difference:

Segal and other medical experts say that while the ratings sites may have good intentions, little of the information they impart is of use, as the most important indicators of clinical care can only be judged by experts. The rest, they say, is just “random discussion.”

“I think the real problem is that the info may not be all that useful,” said Dr. Wendy Mariner, a law professor and director of the Patients’ Rights Program at Boston University. “Patients may be able to evaluate whether a physician is responsive, courteous, on time, provides useful info to the patient,” she said, but they cannot judge the most important issues concerning medical care.

Contra Dr. Segal and (juris?) Dr. Mariner, I happen to think that being responsive, courteous, timely, and useful are crucial issues in medical care. And having been sick with the same disease for 15 years, I’m a better than average judge (and better than some doctors, too) of the “most important issues” concerning my care.

Given the paucity of information out there, online rating tools – like RateMD – are really the only option for patients looking for or looking to share information about quality of care. These tools may be deeply flawed, but they’re better than nothing. (On a related note, I think Angie’s List’s new health care review service will be a tremendous help, once it gets some momentum. Right now there are just too few reviews, at least in my area.) If Dr. Segal wants to help patients, he should work to make more and better information available – and stop trying to shut us up.

(news item via Insureblog)