The New Social Diseases

Ah, I don't mean "social diseases" as in that euphamism for sexually transmitted diseases - I mean social diseases meaning those which have a community component. To wit: ourhealthcircle.org, a new social-networking site around specific health or wellness topics. Sounds a lot like PatientsLikeMe, which I blogged about last month. One difference is the slightly broader spin of Our Health Circle. My hunch: expect to see lots more of this sort of thing. My wish: that these won't be merely 2.0 chat rooms, but will somehow find a way to compile and use the data.

Via ScienceRoll

Malaria: Disease du Jour

A great piece by NYTimes biz columnist Joe Nocera about how malaria is the vogue disease among entrepreneurs with a public health bent. Unfortunately, it's behind the Times Select wall, but it's a good summary of why malaria gets such attention from business folk - it looks like a problem with clear, identifiable needs and a range of viable strategies - but also a nice lens on public health through a financial perspective. With trademark Nocera understated analysis. To wit, my favorite sentence:

In the West, and especially in corporate America, malaria has become the disease du jour. I don't mean that cynically; it's just a fact.

The End of the Thin Pill

Last October I wrote a story in Wired about the emergence of metabolic syndrome, a close cousion of obesity and diabetes, as a medical condition. Part of that story involved the lobbying by the pharmaceutical industry to promulgate the diagnosis, especially by Sanofi Aventis, which has submitted its rimonabant drug to the FDA for treatment of metabolic syndrome. The drug has generated great attention, and some had estimated that it could be a $3 billion blockbuster for Sanofi. But maybe not. Story today that an advisory panel recommended to the FDA that the agency reject Sanofi's drug - which it has named Zimulti - for side-effects involving depression.

Usually the FDA follows the advisory panels recommendations, so it doesn't look good for Sanofi. Looks like a magic bullet for obesity is still elusive.

What's Up with the CDC?

Following up on my post the other day regarding quarantine policy, here's an informative interview with the CDC's Rachel Barwick Eidex on the agency's quarantine authority and policy. Note that this interview is from Feb 2006, so it's not in reference to the Andrew Speaker case, though it is relevant. Interestingly, she says that the list of diseases one can be quarantined for must be established by a presidential executive order. The most recent addition to that list (as of 2006) was pandemic influenza in 2005. And while I'm on the CDC and tuberculosis, I'm very intrigued by the way Andrew Speaker is fighting back and claiming that the CDC and local health authorities were inconsistent in their diagnoses and recommendations. The CDC, meanwhile, is curiously silent. Take, for instance, this week's MMWR. I expected that this issue would include some discussion of tuberculosis, given the national attention this case has brought to the disease. It seems like basic PR - take advantage of the public's appetite for information and do some education via the media. So I found it interesting that the latest dispatch [PDF LINK] from June 8 says nothing whatsoever about TB. Nor did the June 1 issue. Maybe the CDC thought it said everything it had to say with the March 23 issue, which was dedicated to TB for World TB Day.

But I have to say my advice would've been to include at least a reference to that material. At best, it's a missed opportunity. (Mr. Speaker is winning this PR war in my opinion.) At worst, it looks like the CDC is trying to avoid the most covered case of infectious disease in years.

Do Genetic Associations Matter?

So I was speaking with some people in the genomics-information business this week (will disclose who in due time), and I asked them how they dealt with the constant onslaught of genetic discovery research, specifically the dozens of associations with disease that are published every week. (For instance: a quick Google news search turns up this one for Alzheimer's, this one for gastric cancer (warning: video plays), this one for "suicidal thoughts," this one for polycystic ovary syndrome, and so forth.) If you're hoping to make sense of all of this, I asked these fellows, how do you track it? Tagging? Filtering? Interns?

The answer: We don't bother. Their feeling was that most of these discoveries are one-offs, and not scientifically significant (at least until they've been replicated by other research). So rather than try to sort the wheat from the chaff based on the study parameters and so forth, they just ignore it all and wait for concensus to emerge. And here was the remarkable part: Of the thousand (two thousand? three thousand?) of genetic associations that have been published, they figure about 50 are actually established. Fifty. That's it. Not a great hit rate, for science, really. But it makes sense - wait for a finding to be reproduced before taking it as possible, that's basic science. And unless you have massive studies like this one in the new issue of Nature that's pulling together great arsenals of data (rather than looking at smaller cohorts), well, it's probably right to applaud the effort but ignore the results.

Mad Cow Lives

Just spelunking through various health feeds, and I caught this: the UK's monthly report on cases of Creutzfeldt Jakob disease, the brain disease thought to be brought on by renegade prions. It's a pretty stark assessment. First they list total deaths related to definite or probable CJD, year to date (161), then the number of definite or probable cases still alive (165). Considering there's no known treatment, there's not exactly rosy prospects for that bunch. It's funny thing: In the UK, CJD is one of those crazy diseases that, almost 20 years in, they're pretty used to, all things considered, dutiful mortality reports and all (though I suspect it's a reason they come up with great movies like 28 Days Later and Children of Men and we come up with, uh, Outbreak). In the US, though, the disease is still almost totally unheard of (it is literally a one-in-a-million disease). And were we to start getting lots of cases, well you'd see panic, and economic repurcussions, and false diagnoses, and all sorts of crazy stuff. Remarkable how an ocean is still a world of difference.

TB Disparities & Discrepancies

A couple observations/questions about this ongoing saga of TB Andrew. 1) He's now in Denver, under confinement, and recent reports peg his treatment at 18 months with a cost of $500,000. Evidently his HMO - Kaiser Permanente - is footing the bill. I'm a bit mystified as to how they're arriving at these costs and duration, given that the WHO's STOP TB program is working in countries dealing with not one case, but dozens of cases of XDR TB. Surely the WHO isn't paying/can't afford to pay half-a-million dollars for each case of XDR-TB that shows up worldwide - estimated at nearly 20% of cases in Latvia, for instance, which has many TB cases, compared to the US. Which brings me to...

2) There's clearly a fundamental difference between how the US responds to TB and how it's treated in the rest of the world. As this case is demonstrating, we seem to treat TB like a plague, or rather like a disease whose very appearance is reason for hazmat suits and congressional investigations. In the rest of the world, however, TB is an unfortunately frequent guest, the proverbial one that won't go home. Two million people die of TB a year - but that's not the most stunning stat. It's this: 2 billion people - 1/3 of the world - is infected with the TB bacteria. That's the largely unmentioned (at least in all these reports) part of the disease: there are active cases and latent cases. Most people carry TB without ever knowing it, or betraying symptoms, and they can live their whole lives without developing the disease. But some fraction of those - between 10 and 20% - will develop active TB, and then they are on a dire course. If it's spotted and diagnosed, there are antibiotic treatments (ornery, months-long treatments), but if it's not (and many cases aren't), then these cases spread other cases, and so on.

In fact, the difference between the US and the rest of the world is evident in how the disease is actually defined. In the US, latent cases are defined as TB, and if it's recognized you're a carrier, even if you don't have active TB, you'll get treated (some stories have referred to Andrew Speaker as having 'active TB', though by the description of his non-symptoms, I wonder if he doesn't have latent TB). Globally, it's a different story: latent TB isn't even classified as official disease - the WHO recognizes only active cases, of which there are about 14 million worldwide. Those are the cases it goes after, rather than the all-in US approach. In fact, the CDC's TB program is officially called the Division of Tuberculosis Elimination, meaning eliminating it from the US. The division web page used to be a pretty bureaucratic page that talked about how TB was on the ropes in the US, and mainly a problem of screening foreign visitors. But I just went to that division website, and it's been changed. Now it redirects to this page, and it's all about the case of Andrew Speaker. Funny that.

Meet TB Andrew

The runaway TB patient has been identified as Andrew Speaker, a 31 year old Atlanta attorney specializing in personal-injury cases. In the long tradition of Typhoid Mary and Patient Zero (later identified as flight attendant Gaëtan Dugas), we now have a name to attach to the threat of XDR tuberculosis. Boy this guy's life will never be the same.

Quarantine, Cont.

The case of the TB+ honeymooner continues to generate attention, some of it constructive. Today's NYTimes has an editorial calling on congressional oversight committees "to examine whether health officials dropped the ball — and what steps can be taken to ensure that patients infected with deadly contagious diseases protect others from infection." We'll see if that happens. Also, coincidentally the International Conference on Global Health is going on this week, and the Aeras Foundation gave an update on their work to develop TB vaccines, vaccines that could work against the XDR strains this man had. I had a chance to visit Aeras this spring, and the work they're doing is supremely promising. The vaccines are all cutting edge (and a great leap forward from the almost-century old vaccine now in use). One, for instance, inserts genetic material from TB into the shell of a adenovirus; this vector then delivers the immunogenic material directly to the immune system.

Oh, and the answer to the question of Why Is the CDC Based in Atlanta? The CDC was the successor to the Office of Malaria Control in War Areas. Named the Communicable Disease Center, they chose Atlanta because malaria was rife in the southern US at the time. Not for long, though: by 1951, it was deemed eradicated in the US.

Social Networking Over Disease

"Social networking" is one of the Web 2.0 buzzwords that's very much in the air now (not to mention in my in-box). Lots of Web startups claim to do it, around all sorts of themes (Youth! School! Relationships!) but the question always comes down to this: Will the people come? Can you foster a community? And once you have the community, how do you tap it, leverage it? An interesting twist on the theme that does, in fact, seem to be taking is called PatientsLikeMe, a website for people with ALS (Lou Gehrig's Disease), Parkinson's, and MS. The website lets members chart their disease progress, note treatments, and most significantly track their data and progress against other Patients with some neat analytics. And of course you can chat and exchange advice with other patients. It makes a lot of sense. These are scary, degenerative diseases, and people often feel isolated and alone. Forging a community around them offers support. What's more, it offers information - the social network is also acting like a data network, aggregating information into ever-more useful amounts. As the tagline says, they're "harnessing collective knowledge to improve medicine." Other diseases seem to be on the way.