[Senator-elect Scott] Brown has not disavowed his support for the state’s law, which retains majority backing in Massachusetts.

Instead, he argued on the campaign trail that Massachusetts had taken care of its own uninsured, and it would not be in the state’s interest to contribute to an effort to cover the uninsured nationwide.

“We have insurance here in Massachusetts,” he said in a campaign debate. “I’m not going to be subsidizing for the next three, five years, pick a number, subsidizing what other states have failed to do.”

He’s not opposed to health reform, you see – he’s just opposed to everyone outside of Massachusetts getting it. Kevin has a good post on what this means for reform, even if I don’t agree 100% with his viewpoint (though he gets points off for keeping incoherent company). For one, I am less than optimistic that whatever reform does happen will be more “progressive”; on the other hand, if it doesn’t get passed I have a reason to keep this blog alive. I had hoped to shut down once health reform was resolved to my satisfaction, but I am beginning to fear the process might yet outlive me.

On a broader note: those folks cheering Brown’s victory need to realize this is not a triumph of democracy. In a truly democratic system, the party affiliation of the 41st most conservative member of the Senate would not matter one tiny whit. But in the system we have, the Senators representing as little as 11% of the population can filibuster policy that benefits the other 89%. You may or may not think that’s a good thing, but it’s definitely not a democratic thing.

At least Scott Brown is pretty clear: he isn’t joining the Senate to do anything good for the American people. His state has health reform, and the devil can have the rest of us.

(via Matt Yglesias)

Before I get to that, I want to clear my tabs in this last post of the year. First, you should read Bob Herbert’s op-ed about the Senate’s plan to fund health care by taxing “Cadillac” insurance plans. I was indifferent to this proposal, but Herbert makes a very good case for why it is wrong, and so I am now against it. We can only hope the mechanism is abandoned in the reconciliation process.

Next, this article from Tony Judt, about what it’s like to live with ALS is striking and moving – and especially resonates when he says, “it is hard to resist the thought that even the best-meaning and most generously thoughtful friend or relative cannot hope to understand the sense of isolation and imprisonment that this disease imposes upon its victims.” I have often thought the same of Crohn’s, and I am sure it’s true of a great many other illnesses.

Lastly, back to Alien: I happened on Dan O’Bannon’s obituary in the NY Times over the holiday. O’Bannon wrote the screenplay for Alien, as well as several other horror and science fiction films. O’Bannon also had Crohn’s disease – in fact, the obit quotes him as saying, “the idead for the the monster in ‘Alien’ originally came from a stomachache I had.” I’ve seen Alien a half-dozen times, and now it makes perfect sense: how I’ve wished the monster gnawing at my guts would just kill me and/or scamper away.

Of course, most doctors will tell you that Crohn’s is incurable but not terminal – so it’s notable that the obit states, “the cause [of death] was Crohn’s disease.” That could mean any number of things, from surgical complications to sepsis to self-assisted euthanasia – there are a lot of ways to die from Crohn’s disease. But the fact that you might identify a proximate cause of death in no way changes the underlying cause of death; so when doctors say Crohn’s isn’t terminal, what they mean is that in theory you could live a normal lifespan, if you can just avoid all the different ways people with Crohn’s disease die prematurely. Props to whomever named Mr. O’Bannon’s cause of death for what it was.

Sad though Mr. O’Bannon’s passing is, I am at least grateful I can finally claim a movie for my disease. People with AIDS have Philadelphia, and people with ALD have Lorenzo’s Oil – but those of us with Crohn’s? We have frickin’ Alien – and that’s a pretty badass movie to have.

That’s it for 2009. See you in the new year.

For starters, the Senate bill never had a strong public option. Then they dropped even what they had, in favor of a weaker compromise. Then it dropped the compromise substitute for the public option – apparently, due to the influence of Sen. Joe Lieberman (I-FU). (When I was a younger man, and Lieberman was running for Vice President, the two of us shook hands on a runway in Orlando; nowadays, my skin crawls whenever I think about that day.) If health reform fails, Joe Lieberman will bear much of the blame.

Which isn’t to say that all hope is lost. The House bill is still good, and the Senate bill still has some incredibly valuable language. Even if the Senate text was all that became law, it would still be better than the current system – which shows you how bad things are, if even milquetoast legislation is a substantial improvement. For more on this theme,  Ezra Klein has had a few compelling posts about what the Senate bill might accomplish – this one, for example. It’s also worth considering Nate Silver’s 20 Questions for liberals who are clamoring to kill the bill, and Jon Cohn’s response to the same activists.

Obviously, I’m not advocating killing the bill. But at the same time, I’m not spending a lot of my energy advocating for the bill. I say it’s acceptable, but it’s also tremendously disappointing. The public option was important – it was already a compromise from single payer or similar government-intensive reform; Jacob Hacker has a helpful post about what we’ve lost there. Moreover, I am mostly convinced at this point that the Obama administration never intended to deliver comprehensive health care reform, and what they do plan to deliver is a giant new pool of money for insurance companies – in which case, Joe Lieberman is not so much arch villain, as eager henchman in this story.

Assuming the Senate bill makes it through without further amputations, the bottom line for sick people is that it should be a good deal easier to obtain and keep health insurance. It might still be relatively expensive, but folks with lower incomes will get subsidies to help them buy that insurance. The insurance companies can’t eject you arbitrarily, or refuse to pay claims for pre-existing conditions, but they can impose an annual or lifetime limit on your care. There may be some changes that help to improve the quality of health care, but no obvious means by which to contain costs.

That said, we are now at the point where only the most die-hard ideologues can object to this bill. If you’ve been on the fence – perhaps you were suspicious of a “government take-over”- the ball is now yours: this bill changes a lot of things, but it is nowhere near a government take-over of health care. So if you haven’t yet called your Senators to voice your support for reform, now is your chance. Those of us who favored more comprehensive reform have already made our voices heard; it’s your turn. Read a little, think a little, and then call or email.

We’re pretty close to the end of this road, and though it didn’t lead where I wanted it to, we can at least make sure it doesn’t lead us back to where we started.

The Healthy Families Act offers an important opportunity to provide workers with economic security by assuring that they have the ability to stay home if they are sick without fear of losing their jobs or being forced to go to work sick because they cannot afford to stay home. We support this bill and look forward to working with you on it as it moves through the legislative process.

Did you know that the United States is one of the only developed countries that doesn’t guarantee paid sick leave to its workers? Too true, I’m afraid. Yes, FMLA guarantees unpaid leave for most workers, but many still don’t have any form of paid leave. So when they get sick, they come to work.

In addition to being a barbaric practice the lack of paid sick leave has also created an epidemiological problem: how do you stop the spread of H1N1 and other serious pandemics, when a significant number of workers are penalized for missing work? You don’t.

So the Healthy Families Act, first introduced in 2007, now has new life, thanks to swine flu. But it not only guarantees paid sick leave, it also permits workers to use their leave to care for sick family members. Consider how many single parents work crappy jobs – what do they do when the kid is sick?

The Healthy Families Act would be a huge step for sick people in this country – and their families. I know there are other bills hogging all the attention, but keep an eye on this one, too.

(Photo from Flickr user Photojonny by CC License)

A few things I want to share:

If you want a knowing chuckle, you’ll find it either in Dr. Rob’s list of 10 Ways to Annoy Your Doctor, or the complement post: 10 Ways Doctors Can Annoy Patients. I wonder if there aren’t a few dozen tactics missing from the latter, but I don’t fault Dr. Rob for respecting the conventions of the genre.

Leslie at Getting Closer to Myself writes a moving (and long) post about a failed relationship and how it intersects and reflects her experience with illness. I think I have more to say on this, but I want to read it again before I try.

Via The Treatment, I clicked my way to this Slate “Book Club” from 2007 about How Doctors Think, which I found interesting. It explores the differences between doctor-as-lone-hero and doctor-as-team-member ways of viewing medical systems, and how that affects the training and assessment of physicians. I tend to lean towards the latter perspective. I know there are a lot of good physicians out there who can pick out the elusive diagnosis, but they aren’t anywhere near the majority of physicians, and I think Dr. Groopman is way too optimistic that we can teach these skills to all of them.

The big news from this weekend is, of course, that the House passed its version of health care reform. This is a huge step – itself a historic moment. You can read more on Change.org or The Treatment.

The next step is for the Senate to pass a bill. Then the two bills will be combined in a conference committee, after which they will go back to the House and Senate for a final vote. Now would be an excellent time to let your Senators know how you feel about the House bill, and what you want them to do about it.

Your Representative needs to hear from you today. Even if you have never called before – especially – today is the day. You can look up your Rep. here, if you’re not sure who it is. Or, you can just call the Capitol switchboard at 202-224-3121, and ask to be connected.

It’s important this strong version of health reform pass the House, because anything the Senate passes will be much weaker. Having a strong bill going into conference committee – where the Senate and House versions get combined – helps ensure that whatever comes out of conference will still be reasonably good.

Call today.  Call now. Tell your friends.

What stands out in this article is that no one method is a silver bullet for the problem. A few of the approaches are attractive in principle, but likely difficult in practice. Still, if you want to evince any sophistication at all in the debate over health reform and medical malpractice, you simply must know that damages caps are not the only and certainly not the best answer.

One important thing to remember, and this is specific to the last sentence in the article: when a patient who has been injured by their provider are unable to recoup the costs of those injuries, we’re not ‘saving’ any money. Insurers are saving money, doctors might be saving money, but society as a whole still pays the same costs. They just get shifted, mostly onto the patient – and if the patient can’t bear those costs, the rest of us will have to. If we want our court system to be any kind of approximation to justice, we have to bear that in mind.

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.

Now HCAN is running ads asking the Senate to get rid of the proposed excise tax on excess health benefits. These ads and their rhetoric are a bad idea, and I’m good company saying so. Ezra Klein wrote a trenchant critique last week, which you should read if this issue is important to you.

Richard Kirsch, the director of HCAN, then responded with a critique of Klein’s critique. I’m Ezra will respond on the merits of Kirsch’s case (which seem to me based on very misleading mathematics), so I won’t duplicate that effort.

I do want to point out Kirsch’s bottom line, which is that “Policy wonks need to think more like an average person.” Well, no – they don’t. The Orszags and Elmendorf’s of the world spend a lot of time, energy, and sometimes money learning to think like wonks. That’s why we need them, and that’s what we pay them to do. (And I’m talking honest-to-God wonks here, not the poseurs who make their living as pundits.)

To the average person, the health benefits exclusion looks like a great idea – but the average person doesn’t realize that their wages have been stagnant for years, because of the explosion in health costs. The average person doesn’t realize that meanwhile, those exploding costs are making it nearly impossible for those of us without employer-based insurance to get access to the care we need. And the average person doesn’t realize that one easy way to slow the growth of costs is to partially – just a little bit – close the valve on the exclusion.

A good wonk will help the average person see these things, and that’s exactly what Ezra has tried to do – Kirsch would say ‘unsuccessfully’, but decide for yourself. In the meantime, don’t believe everything you see on TV, even if it is an HCAN ad.