One of the things about being ill: it makes me tediously deliberate about things most people don’t think twice about. There’s lots of kids being conceived right this minute without so much as a glimmer of cognizance from either parent about their potential future - and yet I spent several days in the local med school library, looking at microfiche, untangling odds ratios and significance tests, and then a couple weeks hashing out my thoughts with a trusted spiritual leaders.

Laurie is mostly concerned with parenting ability - the extent to which chronic illness interferes with the normal duties of being a parent, and that’s a very real concern for me. But with Crohn’s disease, I have the additional concern that my illness has a moderate genetic component. Different sources give you different guesstimates, but the best studies I could find suggest a 10% chance that a child will have Crohn’s if one of their parents already does.

Until I began looking at this question in earnest, my pat solution to the dilemma was to split the difference - adopt so as to avoid the genetic legacy, and hope for the best in terms of my capability as a parent. But in revisiting this question, I think I have decided that it would be okay to have biological children when the time comes. Partly, it’s that a 1 in 10 chance of passing it on doesn’t seem so bad. Also, I’m feeling pretty healthy these days, and I think I have a good support network for when I’m not healthy.

But mostly, my change of heart was due to my correspondence with people who share my religious beliefs. Yes, I do have religious beliefs - and though I’d never hold myself out as a role model for those beliefs, I know some people who are reliable in their understanding and interpretation of those ideas. I will quote from one of them - without his permission, but I don’t think he’d mind. This is basically the line of reasoning that made up my mind for me:

Human life is good. And, one of the primary ways that we may participate in this goodness is by having children. It is an act of hope, of course, because the future is always (to varying degrees) uncertain. There is no having children without risks. There is also no raising children without risks. No one is in complete control and, in fact, having children can be a way of forming us in the discipline of living for and with others in a world (God’s world) where we experience a significant degree of uncontrol.

There was more to the email, and this probably isn’t enough for everybody, but it was enough to make me rethink some questions I thought were already settled.

I didn’t know Michael very well, but what I knew was worth remembering. His nurse gave me the news, and she has agreed to let me post some of what she wrote about Michael here on this blog. I’ve edited it only slightly.

Michael lost his battle with cancer late Friday Dec. 12.

Michael was the epitome of bravery, courage, passion and determination, love and spirit. He fought adversity and always came out smiling. No matter how tough things got he always kept us laughing and he never gave up. He was very much in love with a very special girl who could make him smile no matter how bad things got and stood by him to the very end. In doing so she has touched my heart as well and her love for Michael kept him alive despite the odds. I never believed the power of love and the Lord as much as I do now after seeing Michael and [his fiancee] cling to each other and the lord when most of us would have just thrown in the towel.

Michael has passed on to be with his family and I know when we see his smiling face again he will probably be eating Don Antonio’s and playing his guitar in a room full of shoes, soccer balls, and a ton of kids. Anyone who knew Michael knew he would do anything to help a child. Michael chose to continue to help cancer research even after passing, he donated his body to cancer research.

Although Michael was only 22 years old when he went home to be with the Lord, he lived every day to its fullest and did more in his short life than many that live to be a hundred.

If you’re looking for a gift to give the sick person in your life, money is hard to beat. Whether it’s premiums, co-pays, COBRA, uncovered expenses, out-of-pocket or out-of-network, there’s always something that needs money. That’s the thing about most health care spending: nobody’s spending on their health. Health is cheap - it’s being sick that’s expensive. I, for one, couldn’t tell you how much I’ve spent on my ‘health’.

And though I wish I could say I earned what I spent, I didn’t. Call it a gift of God, chance, or genetics, but I was born to parents whose careers earned them a lot of money. And they’ve given some of it to me - more than I deserve. Without them, I would never have been able to afford my COBRA payments while I looked for a  job after college, nor after I lost that job and had to find another. I would never have been able to afford the nearly $10,000 in out-of-pocket expenses from my in-network, covered, pre-approved surgery a few years ago. Without their generosity, I would almost certainly be some combination of broke and broken.

So, prosaic as it may seem, mommy and daddy’s money has been a tremendous gift to me. I am constantly aware of this fact, and constantly grateful. My life has taken some amazing and wonderful turns, few of which would have been possible were I forced to pay for my illness. Even were I suddenly wealthy, I could never really pay them back in full.

Awareness of my situation - and that not every sick person enjoys the luxury of wealthy progenitors - is a big part of why I’ve carved out this tiny sliver of the Web. There are too many sick people out there who are broke or broken, or fear they will be, and who simply aren’t being heard in all the clamor over health care. I don’t claim to speak for them, only to speak about my own experience and perspective - but it’s a least a voice, saying what might otherwise stay unsaid.

I don’t get paid for this blog. I don’t accept ads and I don’t plan to, and in fact I pay (not much) for the hosting and domain name. This is my meager, piddling, wholly insufficient way of trying to pay forward what gifts I have. If you are one of the millions of chronically ill people in the US, I hope I am speaking to your experience. If you aren’t, I hope you’re learning what it’s like to be sick in this country.

Posting will be slow for the next couple weeks, partly because of the holidays, but also because I plan to take advantage of the lull to redesign and upgrade this blog. There’ll be some new features, new links, maybe a new look, but still no ads. This is, such as it is, my gift to you.

My employer subcontracts COBRA management to a company called ADP Benefits Services. They’re supposed to send me a coupon every month, which I return with payment. I haven’t received the January coupon, and I’m about to leave town, so I thought I might try online.

I went to their website and input the requested information - nothing happened. I tried again - nothing. Then I noticed the tiny print that said the page was optimized to run Explorer - so I had to switch to a computer that has Explorer, instead of Firefox. That worked, and I was able to register. Once I was registered, I had to sign back in to my account. Then to pay my premium for January, I had register again for an online payment account with ADP. Then I had to input my checking account information because they don’t take credit cards.

If you’re thinking, “gee, sounds like they don’t really want your money”, you’re exactly right. ADP’s mission is to eject people like me from the risk pool; every payment they process is a loss to their business model. Every coupon I get includes a few pages of fine print detailing the myriad reasons they might end my COBRA enrollment, leaving me without health insurance.

American health care: not only do we have millions of uninsured people, but we pay companies like ADP money to strip people of their health insurance.

It turns out that I was nominated for “Best Patient Blog” by a third-party: Ileana of Beating Social Anxiety. I’m entirely flattered, and pleased to see that Ileana has nominated herself as well. Whatever my contribution to bloggery so far, I just don’t have the presence that Ileana does. I hope we both end up finalists, if nothing else.

Of course, that’s up to Medgadget - they pick the finalists. They will let folks vote on finalists starting January 6th, so in the meantime check out Ileana’s blog and keep us both in mind.

“If we are truly going to reform the health care system in the U.S.,” Dr. Russell said, “everybody has to participate actively and must educate themselves. That means doctors, nurses, other health care professionals, lawyers, pharmaceutical companies, and insurance companies. But most of all, it means the patient.”

That’s a solid argument, but Chen’s column betrays an ignorance of the patient’s point-of-view.

When I look for a doctor, of course I am concerned about how that doctor relates to me as a patient. But there are a whole host of other issues I consider as well, such as the physician’s training, board certification, experience, membership in a respected professional society, safety records and hospital affiliations.

…as it turns out, most patients don’t feel the same way. And many of them are just as trusting when it comes to treatment specifics.

Chen assumes that because patients don’t do her kind of research, it makes them more “trusting” - ie not rational. I’ve already talked about the importance of social networks in making these sorts of decisions, but let me point out the assumptions Chen is making.

First, nearly everything she cites - training, certification, et cetera - is readily accessible for nearly any doctor. Why spend more than an hour on it?

Second, the really important stuff - safety and outcomes - is nearly impossible for patients to find. Please, somebody tell me if I’m wrong, but as far as I know this information is nearly impossible to come by except through unofficial channels. If Dr. Chen can get this info, it’s as another doctor - not as a patient.

Third and final: doctors don’t like to be challenged on this stuff - especially surgeons, in my experience. It’s all well and good to say patients should “come to the relationship educated about their doctors, their illnesses and their treatment”, but Dr. Chen has no clue what that process is like for a patient, and not a peer.

As a patient, you should be educated and informed about your illness, treatment, and physician. But this isn’t all on you, the patient. Your next surgery doesn’t require a master’s thesis worth of research. Instead, the doctors you already have should be helping you navigate this process - and doing a lot of that work for you. A good doctor will understand: it’s part of her job. Dr. Chen isn’t that doctor.

Already, 42 percent of mid-level providers practice in specialty fields, and I fully expect this number to rise if the primary care environment continues to deteriorate, especially when contrasted to the salary and lifestyle offered to specialists.

So to those who think that nurses and other mid-level providers can solve our primary care woes, I don’t see it happening.

He writes this just a few posts after arguing for a 20% increase in Medicare payments to primary care physicians. Apparently he thinks we should pay more for primary care - just not to PAs and NPs.

Let’s look at some numbers:

The median physician in family practice makes $137,119 -$156,010; compare that to surgeons at $228,839 and up.

By contrast, the median physicians’ assistant makes $69,517-80,960 - and can do just about everything a PCP might do.

So if we’re going to spend more money on primary care, it’s a lot more efficient to do so making PAs a priority, rather than physicians. Obviously, 20% of 70 thousand is a lot less than 20% of $140,000 - and we can hire two new PAs for what we might have spent on one new PCP.

But what’s also clear from these numbers is the gap in physicians’ salaries - about $90,000. If the real problem is the differential between primary and specialist pay scales, then a 20% increase in general practice salaries only narrows the gap to about $60,000 dollars - still a pretty big differential. If narrowing that gap is the key to fixing primary care, then it’s going to be tremendously, maybe prohibitively expensive.

Whatever the gap between specialist and generalist PAs (the BLS isn’t very specific here), it simply can’t be as big a problem as it is for physicians. Thus PA’s salaries will be far more responsive to modest absolute increases: a $28,000 raise is going to mean a lot more to a PA than it is to a PCP. So again, the problem is much easier to solve if we look to PAs (and nurses) as the key to primary care.

So yes - we should reform primary care, including the way we fund it. But if we’re going to pay more, we should get the most bang for those bucks by focusing on hiring more PAs and paying them better, rather than dumping money into the chasm between PCP and specialist salaries.

Prostate cancer is an abstraction in the same way that global warming was an abstraction, until the world saw the photograph of that forlorn polar bear trapped on an ice floe. It should be the goal of each one of my brothers-in-disease to become that bear.

You could call this blog “Yogi ‘Smokey’ McFozzy’s Chronic Bear Jamboroo-on-Ice”, except I don’t have prostate cancer so I’m not one of Jennings’s “brother’s-in-disease”. I mean, I just have Crohn’s disease - which means I have nothing in common with any other sick person ever, right? Except when I do. Here’s Jennings, with yet another tug on the heart-strings:

And the guy who, as he gently drained my ileostomy pouch — not related to my cancer — told me how he’d had to wear a temporary pouch after he’d been shot when he was young and stupid.

Wait - Jennings has an ostomy that’s unrelated to his cancer? This is… interesting. I’ve googled and googled, and I can’t find that he’s ever written anything else about his ostomy. How is it that a professional writer doesn’t write about something so obvious? How can he write so openly about his pecker trouble, but barely mentions his poop sack? Is that a floe too far?

My guess is that if Jennings’s ostomy antedates his prostate cancer, it’s because he had some kind of illness or injury - in which case he probably already knew a lot of the lessons he writes about vis prostate cancer. I’ll be he knows full well that the experience of serious illness is pretty much the same, whatever the diagnosis. But that’s not what he’s been told to write, because there’s no profit to the Times in appealing to the common experience of sick people in this country.

There is, however, a good deal of profit in telling over-50 men with rotten glands they’re wrestling some kind of ferocious beast, and not merely their own ignored mortality. So instead of any honesty or candor about the larger experience of being ill, we get pablum like this:

Prostate cancer — any cancer — is a crucible in which we patients are somehow, we hope, reborn. It’s a rite of passage as resonant as any other — a graduation, a baptism, a wedding — and should be treated that way.

Once again, Jenning is demonstrating (probably encouraged by his editors at the Times) the worst tendency of sick people: assuming his disease is special. If he could stop staring at his prostate long enough for a look around, I think he’d see plenty of bears - and find a lot people ready to treat him as more than just a statistic. Roar.

I was out to dinner with some colleagues recently, and one had the sniffles. “You should take Airborne,” said another. “Only if you think it’ll help to urinate a lot of vitamin-c,” I said. It so happened that one of the guys at the table is an actual Airborne Ranger - a medic, now in the Reserves after two tours in Iraq. He laughed. “Yeah, that stuff is junk. I don’t know why anybody buys it.”

(Apologies to Mr. Coppola)

But when somebody calls you at 9 in the morning and wants to talk about your health, it’s… unnerving. I’m reasonably certain my caller was in fact a registered nurse working for my health insurer, but how can I prove it? And what if she’s not?

I may be a little paranoid, but it really is difficult to talk about my health with someone I didn’t call and don’t know. So you disease managment people out there - get to work on that, okay?