Posts about health

The small c and me

I have cancer, prostate cancer.

When the doctor told me, he said that if you’re going to get it, this is the one to get. It made feel as if I’d just gotten an upgrade on Cancer Air. It was caught very early, found in only 5 percent of one of 12 samples gathered by shooting a harpoon gun into me (where, you don’t want to know). So I am lucky.

I’m reminded of a brainstorming session I went to with Tony Hendra, the comedy writer, toward the end of the ’80s, when he was leading the collaborative writing of a book called The ’90s: A Look Back. I was invited to a session where we speculated about the near future of medicine and Tony riffed about what it would be like once they found a pill to care cancer. “Got a spot of cancer today?” he said, copyrighting. “No problem. Take Tumorout. You’ll feel as good as new. Go ahead. Light up that cigarette. Won’t hurt a bit.” I was disappointed that his cancer gag didn’t make it into the book. I’m also disappointed that they didn’t invent Tumorout.

Why am I even telling you about this? As I wrote in What Would Google Do?, I gained tremendous benefit sharing another ailment – heart arrhythmia – here on my blog. And so I have no doubt that by sharing this, I will get useful advice and warm support (and maybe a few weeks’ respite from trolls). I argue for the benefits of the public life. So I’d better live it.

I also hope to be one more guy to convince you men to get get your PSA checked: a small mitzvah in return for my luck. And when we talk about the cost of screening in the health-care debate, I’ll stand up to say that when you’re the 1-in-100, screening is worth it.

I’ve always been a cancerphobe; can’t imagine much worse than that creeping invasion. Yet I’ve surprised myself, staying calm in the face of realizing my fears, probably because I know it could be worse and, well, it is what it is. I’ve been using this amazing internet to do research and, with my wife’s help and counsel, make the complicated decision on a course of treatment.

Before doing my research, I’d assumed that the treatment Rudy Giuliani made famous – radioactive seeds – would be the way to go: simple, and if it doesn’t work, I thought, then I could resort to surgery. But it turns out that once you get zapped, it becomes very tricky to perform surgery. At my age – young, damnit – the wiser course is surgery, cutting out the prostate and, one hopes, all the disease with it.

I’m opting for robotic surgery – geek that I am, how could I not? My only fear is that they’ll wheel me into the O.R. and I’ll see that the machine is powered by Dell.

I’ve also chosen Sloan Kettering and Dr. Raul Parra to do the surgery. There’s one of the privileges of living in New York, among the best.

I’ll keep you informed as I find notes of interest while progressing toward surgery in mid-September and through recovery. Fear not, I’m not going to turn this into a disease journal: I don’t expect you to be consumed with my problems when others have theirs, far worse. Or perhaps you should fear, for instead, I will keep on writing about media wonkishness: about the rise of the next media and the fall of the last. Except now, I’ll be in a worse mood.

Health-insurance stagnation

America’s health care system – or lack of one – leads to a stifling of economic innovation and mobility. Consider:

* Daniel Taghioff argues that people are more likely to risk starting new enterprises – leading to economic growth – in countries that have health safety nets.

Turning to entrepreneurialism – would you rather risk all to start a new business in a place like the US where if you lose everything you may end up, literally, with nothing, no health-care, no decent schooling for your kids and so on? Or would you choose a society where, if all else fails, the state (or strong social networks) will take care of you? . . . The list of countries with the most new businesses per capita is full of small to medium sized countries with strong social safety nets, or small Asian countries with very high levels of social cohesion.

* I know I didn’t quit my job until I had new health care insurance lined up, for without an employer, I wouldn’t have gotten any (and in the interim had to pay $24,000 per year in COBRA). How many people are sticking with jobs, unhappily and thus probably unproductively, just because of insurance handcuffs? What if they were freed? It would be better for them and their employers.

* General Motors was brought down by more than its its health insurance obligations. Nonetheless, those obligations weighed heavily on the company as they do on many other companies with long legacies and large staffs.

* I was at a WEF event yesterday at which one of the wise counsels pointed to the exacerbation of the health-care crisis that is coming with so many Americans unemployed. This, I think, will force the political issue.

Rather than spending billions to bail out and now even buy crumbling legacy industries and crooked banks, how much more value would universal health insurance give to the economy?

What if, instead of bailing out the past and filling potholes, the government assured universal broadband access? What would that do to spur innovation and entrepreneurship and begin to reform education, which, in turn, would spur innovation? What if education were reformed to emphasis innovation over test-taking? What if investment in new companies were a high priority of the tax code?

We are not thinking strategically enough about these issues in the political debate. We complain about companies thinking short-term but so does the nation.

Dr. Wow

Thanks to links to the post below on medicine as information, I heard from Dr. Jay Parkinson, who is starting an incredible company and platform called HelloHealth to reform the relationship between doctor and patient around (a) the patient and (b) conversation. I’ll let him tell you about it (from Poptech):

Jay Parkinson at Pop!Tech from Jay Parkinson on Vimeo.

As the man says at the end, it’s enough to make you wish you lived in Brooklyn to take advantage of the service. I don’t want to jinx myself, but I almost want to get sniffles to try it out.

In control of health

After I wrote the chapter in my book on Googlified insurance — thanks to the wisdom of the crowd in the comments here — I tried out the ideas on a couple of insurance executives. “You may be mad,” one of them emailed later, “but you had some good ideas.” Actually, my readers did.

I proposed a scenario in which the community of the insured gained responsibility for its own health, which would require insurance and medical companies to hand over control to them, to be fully transparent with data and information, and to provide services the community could use to improve its health and reduce its own costs.

Let me play out two implications of this with my own health situation. First, a case of cutting costs:

Because of my afib, I have to take Coumadin, a blood thinner. I am required to go to the medical group every 2-4 weeks for them to prick my finger and make sure the dosage is OK. In some people, it can be variable and volatile. Not in me. I’ve been on the same dosage with the same effect since I started. But they keep bugging me to come in. They yell at me.

When I get there, I’m offended at the waste of money. There’s a nurse who sits at a computer and judges my results and then types and types and prints out a sheet. There’s an assistant who does nothing but prick my finger and then marks up that printout. It takes them two people to do what my diabetic mother does many times a day on her own. They charge me a $20 copay each time I do this. I shudder to think what they charge the insurance company. It’s like watching a government bureaucracy in white coats.

My point: If my interests and those of my community and insurance company were aligned, I would put up a fuss and whistleblow this boondoggle. If I knew it could have an impact on my costs, I’d report this to the insurance company. If I knew my community had the power to do something about it, I’d tell my tale in a community forum and gather critical mass around imposing efficiency.

But my interests are not aligned with the insurance company’s. They are out to screw me. They think I’m out to screw them. The doctors who are screwing us think we’re all screwing them.

By the insurance company holding onto the power in this relationship, it screws itself. We have no interest in helping them. If, instead, they enabled the community and each of its members to take control of health and costs, if they acted as a true service to the community’s and its members’ needs, then they all would benefit — except perhaps for the unnecessary and now jobless assistant and the doctors who can no longer skim a profit on this scam.

Second example: I’m tussling with my cardiologist about the dosage of the drug I take that stops my fibrillation (the poetically named Rythmol). I’m on a high dosage but it’s working well (knock wood). The doctor says he wants me on a lower dosage, but the last time I tried I nearly went into afib and had too many palpitations (and I couldn’t concentrate under the pressure to get my book written). The risk of the drug is that even as it stops afib, it can cause afib. The risk of not taking the high dosage is that I can go into afib — and the more you get afib, the more afib you’re going to get. The risk, either way, is getting more cumulative bouts of afib. I’ve already had enough to make me a life-insurance risk, which is to say that the condition was not sufficiently managed early on when I got it (after 9/11/2001) and before I went on Rythmol.

[Note, as an aside, that my life insurance company is screwing me for a condition that I got from 9/11 and it’s a company run by and for military people. I wonder how they treat Iraq veterans. More on that another day.]

There’s a health decision to be made here. It’s about balancing risks. The only way to make that decision is to look at as much clinical data as is available and judge that against the comparative risks and against my personal experience. The doctor will come to a conclusion based on his education and reading and a few minutes’ consideration in my case.

But the decision is properly mine. My health should be under my control. It is ultimately my responsibility. But the system is not set up for me to make that decision. It is not set up to inform me or give me control.

At Davos last year, I sat at a table with a bunch of doctors who complained about their patients going to the internet to get what they said was misinformation. They didn’t want the internet to get in the way. They wanted to remain in control. I told them they were looking at this the wrong way. Instead, I said, they should point their patients to what they though were the best resources.

Doctors, I said, should act as curators of information for patients. That’s not what doctors do. They don’t have the means or, they’d argue, the time. Insurance companies offer some information to patients, but it’s lite and not too valuable. (Did you know you should eat less? Not smoke? Exercise? No, really?)

If insurance companies and doctors tried to empower patients and their communities to take control of their health and the costs surrounding them, if they gave us information about both the medicine and the business of it, they might succeed. Right now, no one does.

Really public health

I signed up for Google Health and immediately found it handy with news about each of my conditions. My wife wondered why anyone would use it and risk health data becoming public.

But my life is already an open blog and I’ve already talked about most of my conditions — mainly atrial fibrilation — and received benefit for it: support, links, resources, others’ experiences.

So why not talk publicly about our health? Fear. We fear losing a job or not getting insurance or, with certain conditions, being stigmatized. That is what we should address. With universal insurance and laws to prevent discrimination on health, we’d have no need to fear. Stigma, I can’t do much about.

There are other benefits accruing if we talk publicly. The more we share experience and create data, the more doctors can learn about our conditions and perhaps what causes them. The more we support each other, the more helpful it is for each of us (see Patients Like Me).

Do I trust Google with my health information? Do I trust you? The key is to make sure that I have control over my data. Just as with Facebook, control is the issue.

: Just as I finished writing this, I see that Fred Wilson agrees. Note that his father and I have shared our afib experience and I found it very helpful.