Drugs and money: tough choices

Today's NYT has a great article about how Britain decides which drugs it will pay for through its National Health Service. An entity called the National Institute for Health and Clinical Excellence (NICE) has the job of undertaking a cost/benefit analysis for new drugs. It compares a given drug's price with the drug's ability to improve or extend a patient's life. Some drugs make the cut (like Betaseron); others don't (like Avonex).

This makes some people really mad, natch. The value of adding, say, one year to the life of a 75-year-old male smoker is likely to be reckoned much higher if you happen to be the 75-year-old male smoker in question. But if the NHS's budget is finite, what is the alternative?

A cook's manifesto: I'm no chef

Marcella Hazan, who has taught bazillions to make the great eats of Italy in their own kitchen, has an op-ed in the NYT today. She argues that our fascination with food as entertainment and artistry, and with the chefs who create that kind of food, has caused us to devalue the importance of food as family- and community builder, and the people who do the more humble home-cooking. Snip:

I am my family’s cook. It is the food prepared and shared at home that, for more than 50 years, has provided a solid center for our lives. In the context of the values that cement human relations, the clamor of restaurants and the facelessness of takeout are no match for what the well-laid family table has to offer. A restaurant will never strengthen familial bonds.

A while ago, my dad gave me a chef's jacket with my name embroidered on it. I've worn it on occasion while making some fancified food for friends, but after reading Marcella's column, maybe I'll just stick with an old-fashioned apron.

Unexpected cutbacks?

Anybody who's been paying attention has noticed that increases in the prices consumer goods have increasingly taken the form of decreases in the amount of product you get, instead of increases on the price tag. What used to be a half-gallon container of ice cream became 1.75 qts, then (for Breyers, anyway) 1.5 qts. Well, caveat emptor--you gotta keep your eye on the ball and look at the little shelf tags that give per-ounce prices, or do some quick math in your head.

But Kimberly-Clark may be taking this trend to strange new places: my underwear. When I opened my last shipment of Depends Guards for Men, the package announced that I was getting a new, more comfortable fit. I also noticed the package looked a little smaller. After a couple weeks of product testing, I've come to the conclusion that the new, more comfortable fit must have come at the expense of, uh, capacity. So sure, reduced lumpiness in the area in question is bound to increase comfort, just like a 25% smaller cheeseburger makes for a burger with just 75% of the fat in the previous product.

Here's the kicker: if you want the properties of the old product, Kimberly-Clark helpfully offers Depend Boost inserts, which allow you to soup up your existing disposable absorbent garment. In other words, you're welcome to buy the missing 25% of your cheeseburger. Somebody get Ralph Nader on the phone...

Catching up

I've been pleasantly suprised at how many old friends I've bumped into on Facebook--seems like it's achieved the sort of critical mass of users that made eBay the only auction site worth looking at. Anyway, last week I connected with a guy I'd known since I was 6 and went to school with until I went to college.

When you catch up with someone like that, what do you say about MS? Anything? Here's what I said:

Now, the juicy bit: back in 1992, I developed the symptoms of what was diagnosed a couple years later as multiple sclerosis (MS). I’m not sure how much you know about MS, but I’m doing pretty well for someone who’s 15 years into it. I have a lot less stamina than I did 10 or even 5 years ago, which has been frustrating for a guy who’s inclined to be a do-er. I use a cane maybe 50% of the time, mostly for balance, and I’ve had some trouble with chronic pain as a result of nerve damage, but rest of my symptoms are mild-to-moderate indignities. I’m not sure what else to say about it. I think in the last few years, I reached a point where the disease is always with me. At first, it just meant giving myself a shot every couple days and checking in with a neurologist a couple times a year. But now, I’ve got a visibly funny walk and a disabled parking tag, I take a startling assortment of pills, I had a sort of neurological pacemaker implanted in my hip this spring, and I go to bed around 9:00 every night. There aren’t many places I go or things I do without MS coming along with me. It’s almost easier now, not trying to pass for a healthy person.

What else? My mom lives in Madison, but my dad and his second family are in West Salem, so I get back to La Crosse fairly often. Um, turn-ons include comfortable shoes, gin & tonics, and plentiful public restrooms, turn-offs include people who talk too fast, area rugs (tripping hazard), and the McCain health care plan.

Woohoo! Three-day weekend! sinus infection!

On Tuesday, I had a momentary ache in my lower back. It passed, but I recognized that ache from when I was 12 or so. Back then, I noticed it while swimming with my dad at the ancient pool at the local tech school (it was down in the basement of a building that's long since been remodeled into something else, but I remember thinking it reminded me of the pool in Lex Luthor's hide-out in the first Christopher Reeve Superman movie). Then I got another one yesterday evening. And by the time I went to bed last nite (we put our old futon out on the back porch and listened to the amazing whine of the crickets), I had a sore, swollen throat and a nose full of goo. Sinus infection.

It's not uncommon for me to get them in the fall allergy season. I'll gargle with salt water, suck some up through each nostril and spit it out, and I'll be fine in a couple days. But I was all set to charge out and go fishing bright and early this morning, and now I'm achy, tired, and sorta depressed. I should be feeling better just in time to go to work on Tuesday morning. Crap.

What I did this summer

1. Ate lots of peaches. I wish they grew locally, but they don't. In early summer, they come from California (meh). In June and July, they come from Georgia (mmm). In August, they come first from Missouri and Illinois (mmmmmmmmm). About now, they come from Michigan and Colorado (can't talk- eating).

2. Read some books. Le Carre's "Single & Single," Russo's "Empire Falls," and Pelecanos's "Shame the Devil." Quit on De Lillo's "Falling Man." I can't seem to stay focused unless there's a lot of "Then what happened?" moments to hold my attention. It's a shame, I guess, that I've lost my attention span for Serious Literature; on the other hand, it's nice to be reading something: I think there was a period of maybe five years where I couldn't read anything longer than the New Yorker's "Talk of the Town" pieces.

3. Listened to some audio books. Black's "Silver Swan," and Fforde's "Eyre Affair."

4. Peed-- lots. Summer ain't summer without a gin and tonic or a nice hoppy ale, but what goes in also comes out. Despite the Interstim, and even at work (where I generally stay away from booze), it feels like I've had to make an inordinate number of express trips to the WC (leaking most of the way and staggering like a sailor on shore leave) and changed an inordinate number of pads.

5. Bought a new car. After the Prizm was totalled, we spent a couple months or so looking for a similar cheap, efficient used car, only to find $4 gas had made that kind of car far too expensive. Example: we almost bought a 2001 Toyota Echo. Nice enough car, great mileage, possibly even less fun to drive than the Prizm, but $6000 for a 7 or 8 year-old car with 107,000 miles on the clock? Eventually bought a new 2008 Civic sedan. With tax, it was pretty close to $20,000, but in my book it's at least 5 times as much car as a 2001 Echo that's already been driven 107,000 miles.

I'd initially been thinking we'd get a Civic with an automatic tranny, but in the course of looking at used cars, we drive a sporty little Mazda Protege 5 with a stick. Wasn't interested in the car--not great gas-wise--but we both found we liked driving a stick. I'd kinda given up on a manual after driving one in heavy stop-and-go traffic left me rubber-legged, but I figure I can drive the car with the automatic in situations where I'm likely to get stuck in stop-an-go traffic. Frinstance, getting to work after a blizzard. We had a couple of those last winter, and it took me about an hour to drive what is usually a 15-minute commute. Let's just say the sporty stick-shift is a good motivator for doing one's PT exercises on a regular basis.

6. Blushed, or maybe flushed. For some reason, I seem to have developed a tendency to develop, from time to time, a hot, red, right ear. It's happened a couple times a week or so, and it doesn't seem to be connected to any particular trigger. Last week it happened (1) while eating really good pizza and (2) after reading a short prayer at my kid brother's bar mitzvah. I asked my neurologist if it might be MS-related. His response: "Maybe. Pretty much anything can be MS-related, because your brain pretty much controls everything."

7. Nothing. At work and at home, I've had less to do this summer. At work, because of the cyclical nature of my job, I had lots of time when I didn't have work on my plate. At home, with Carmen not working or going to school, I found myself with more time when I had (or at least felt like I had) no pressing household duties. More free time means more time for naps, crosswords, books, dogs, meditation, sex, and other fun things. I'm hoping I haven't developed lazy habits I won't be able to break once things get busier. Caryn starts classes again tonite, and work has been starting to heat up a little bit lately.

Dogs can 'catch' human yawns

Researchers in the UK report that pet dogs can 'catch' human yawns, the way humans can 'catch' yawns from each other:

The team found that 21 out of 29 dogs yawned when the stranger in front of them yawned - on average, dogs yawned 1.9 times. By contrast, no dogs yawned during the non-yawning condition. The researchers believe that these results are the first evidence that dogs have the capacity to empathise with humans; although the team could not rule out stress-induced yawning - they hope to in future studies.

Well, duh.

I'm pretty sure most dog owners have had the experience of passing a yawn along to Fido, and, for that matter, catching a yawn from Fido. And while I confess to being one of those folks who are apt to anthropomorphize dog behavior, it seems unlikely to me that this could possibly be the first evidence that dogs empathize with humans. Whether you call it empathy or a "sweet disposition," we humans have been selecting for this kind of dog for as long as we've been sharing our lives and homes with them.

Maybe signs of dog empathy are stronger or more frequent when they live around people whose body language frequently telegraphs fatigue, pain, or other distress. Our yellow lab seems particularly skilled at picking up when my MS is kicking my ass.

2 PML deaths scare investors, not MS patients or docs

As the WSJ reports, Elan and Biogen shares were hit hard by news of two additional cases of progressive multifocal leukoencephalopathy (PML) among the 31,800 MS patients on Tysabri. According to the article, though, doctors and patients are "unfazed."

Of course they are. That's because investors can put their money in any of a zillion other places, but an MS patient's available alternatives are pretty limited, especially given that Tysabri is "generally recommended for patients who have not been helped enough by, or cannot tolerate" the interferons, glatiramer, or mitoxantrone.

Patching a hole in the Americans With Disabilities Act

Over the last ten year or so, the employment protections afforded to disabled Americans have shrunk as a result of federal-court decisions (notably the Supreme Court's decisions in Sutton v. United Airlines, 527 U.S. 471 (1999) and Albertson's, Inc. v. Kirkingburg, 527 U.S. 555, 565 (1999) focusing on who is a "qualified individual with a disability" and what is an "impairment." The gist of the rulings is that a person is not disabled for purposes of the ADA if the person can eliminate substantial limitations on major life activities by mitigating measures such as drugs, devices, and coping mechanisms. The National Council on Disability has a nice summary of the role of mitigating measures in ADA cases.

The House of Representatives recently passed a bill (HR 3195) to revamp some of the statutory language of the ADA in order to undo what the Court has done with Sutton and Kirkingburg. Both major-party presidential candidates have indicated their support (scroll down to "Broader scope for disabilities act") for such legislation, so maybe it has a chance of enactment.

Hey, didja know Michelle Obama's dad has MS? It's too bad that the causes of disabled Americans are fragmented into individual "disease lobbies," but wouldn't it be great to have someone in the White House who knew first-hand what it's like to live with MS?

More on worm therapy for MS

A while back, I mentioned that my neurologist was conducting a small study to see if ingesting the eggs of teensy little worm might benefit MS patients. It's been pretty well-documented that such intention infections have immunomodulatory effects, and now a recent study has identified specific effects that hold promise for MS. Snip:

Helminth infections in MS patients created a B-cell population producing high levels of IL-10, dampening harmful immune responses through a mechanism mediated, at least in part, by the ICOS-B7RP-1 pathway. The IL-10-producing B-cell phenotype detected expressed high levels of CD1d and was similar to the one observed in mature naive B2 cells (namely, CD11b(-), CD5(-), CD27(-), and IgD+). Moreover, B cells isolated from helminth-infected MS patients also produced greater amounts of brain-derived neurotrophic factor and nerve growth factor compared with those of normal subjects, T. cruzi-infected subjects, P. brasiliensis-infected subjects, or uninfected MS patients, raising the possibility that these cells may exert a neuroprotective effect on the central nervous system.

MS in the US vs. MS in the UK

NPR has been airing stories comparing the American health care system to systems in other countries. This morning, a story used MS as a way of illustrating the differences between the US and the UK. Here's the gist: In Britain, Linda starts having odd feelings in her legs. Her GP refers her to a specialist, who promptly orders an MRI and other tests, which are performed the same day. Linda starts taking Copaxone, though the NHS does not cover it at the time. Later, the NHS approves Copaxone and refunds Linda's out-of-pocket costs. Her only complaint is that she has to pay for physical therapy. In the US, Jeffrey gets diagnosed with MS and loses his job due to disability. With no job, Jeffrey has no health insurance and can't afford his meds. He loses his house and declares banko. His doctors don't take Medicaid, and he ends up in the 2-year waiting period before Medicare will kick in. He attempts suicide, but fails. He now has coverage through his wife's employer, but it isn't as good as what he had when he was working.

Lucky Linda. Lucky Doug, too: I was studying in the UK when I developed the numbness in my legs that sent me to a GP, who sent me to a neurologist.

Every weekday, I silently curse the alarm clock when it goes off at 6. Then I thank my lucky stars that I'm lucky enough to still be working.

One-car family, for now

Saturday nite, I was going to finish up a big batch of chili for the freezer but needed a couple poblanos. I got into our little Chevy Prizm, started toward the Vietnamese grocery, and was promptly (as in 50' from our driveway) smacked in the passenger side by something big, red, and heavy. It turned out to be a kid driving a red Impala who may or may not have blown the stop sign on the corner.

It's pretty ugly, body-wise, and there's some off-green goo (not engine oil, not antifreeze, so transmission or brake fluid?) dripping under the engine, so I'm pretty sure it's totaled. So the question is what we'll get from the kid's insurer and what we can buy in a market where reliable, fuel-efficient econoboxes like the Prizm are much more in demand than they were when we bought the Prizm a couple years back.

I'm still feeling a little out of sorts, neurologically speaking. Carmen and I went to my neurologist on Friday, but he didn't think I was having a flare. My theory is that it's a consequence of wasting too much time at work playing Super Bounce-Outor too much THC (I'd been increasingly foregoing brownies in favor of a more immediate intake apparatus). This week, brownies only, and we'll see how it goes.

My anxieties about unfinished projects have diminished substantially. Carmen's been getting a lot of the staining done on the porch, and we've done some nice landscaping. If any good came of our recent flooding, it was the certainty that even if we had put down grass seed it would certainly have washed out in the weekend we got 7" of rainfall. I think it has also helped that I've not been out fishing for 5 or 6 weeks, what with the no-wake restriction and the vast quantities of raw sewage that ended up in the lake.

Dizzy + foggy + tippy = dizzippoggy?

For the last couple days, I've been feeling a little dizzy, especially in the morning. Both yesterday and today, it hit me when I got to the office and sat down at my desk. I had some trouble reading stuff on my monitor--my eyes didn't seem to want to follow text in an orderly left-to-right fashion--and when I'd get up to walk down to the bathroom, I seemed incapable of walking in a relatively straight line. By mid-afternoon, it passed for the most part, but I haven't really gotten anything done this week. This is partly because I haven't got much to do, just some ongoing summer projects, but it's made for interminably long, boring work days punctuated by occasional spasms of self-consciousness and worry.

I'm not sure what, if anything, to do about it. The timing's kinda bad: Carmen just found out she was not accepted to the nursing program she wanted to start in the fall, and I'm still a year away from qualifying for my employer's long-term disability benefit, so I'm worried about our long-term finances and was planning to ask my boss for a raise. Now I'm afraid to sit down with my boss lest he notice my somewhat addled state.

I wonder if it's something ear-related, at least the balance stuff. I've had moderate tinnitus for the last few years and lately have noticed a few times that my left ear has faded out briefly.

Interstim after two months, and other stuff

Two months after getting hooked up to the device, I'm still trying to decide whether I made the right call. I'm pretty sure it has improved my frequency/urgency situation, but it's an incremental improvement, say 25% or so. It seems to give me a few extra seconds to get to the bathroom, but I'll still be purchasing Depends by the case from Amazon (fellow cheapskates take note: Amazon will cut 15% off the price if you sign up for regular shipments, which you can always delay or decline). I still feel the device causing my right foot to flex slightly, which can be annoying when I'm stuck behind a desk at work. The incision has healed nicely into a rather bad-ass-appearing scar, but it remains somewhat sensitive to pressure.

On the down-side, though, I feel like I still haven't recovered the level of strength and stamina I had before the procedure. Which I guess shouldn't surprise me, seeing as how I went about a month before I could get into the pool. I'm trying to be pretty aggressive about getting back into shape, but I still feel wobblier on my feet, more prone to a stiff Frankenstein gait after sitting for a while. I've got some knee pain when I flex my right leg or when I try to get up off the floor. And it's starting to get too hot outside for a 15-minute walk around the block.

Bad timing, too: we've had a really nice new porch built that needs to be stained before the wood suffers water damage. We've also got several new windows that need at least 2 coats of polyurethane, and a muddy back yard that needs landscaping. On top of it all, last weekend we got 6" of rain, so the basement is wet (again). Since finishing classes a few weeks ago, Carmen has gotten heaps of stuff done around the house, but I wish we had the money (we spent our stimulus rebate on veterinarian bills last winter) to have somebody else do a big chunk of stuff.

That darned National MS Society slogan

Remember how I whined and whined about the National MS Society's lame new slogan ("MS stops people from moving; we exist to make sure it doesn't.")? It showed up in an odd way in an article about a local MS walk fundraiser. Snip:

MS interrupts the flow of information from the brain to the body and stops people from moving. It is an unpredictable, often disabling disease of the central nervous system.

As lame as the slogan is, it's even lamer as a description of the disease. Someone who reads this could be excused for developing a fear that a family member, coworker, or employee with MS might some day, without any warning, suddenly be frozen motionless like some kind of neurological Pompeian. Should they be permitted to venture out in public unescorted? What if MS struck as they were crossing a busy intersection? What if MS struck as they were driving a car? Would the car freeze too?

Might scare up a few more research dollars...

In the news: gas tax holiday plan makes silly season sillier

Even though I'm a pinko treehugging liberal pantywaist, like many others of my kind, I've had a kind of soft spot for John McCain. Even though we'd prefer to see a democrat in the White House, we secretly think to ourselves that he'd be a huge improvement over the current administration, that he's somehow above the kind of right-wing pandering that was, at least until the 2006 mid-terms, the Republican's ace in the hole. Well, if there were a number of thinking people out there that might have been potential McCain democrats, that number should be significantly lower in light of his proposed federal gas-tax holiday.

There are all kinds of reasons why it's lame in terms of economic policy and absolutely moronic in terms of energy policy. Tom Friedman explained them well in his NYT piece yesterday. Snip:

[W]e borrow money from China and ship it to Saudi Arabia and take a little cut for ourselves as it goes through our gas tanks. What a way to build our country. No, no, no, we’ll just get the money by taxing Big Oil, says Mrs. Clinton. Even if you could do that, what a terrible way to spend precious tax dollars — burning it up on the way to the beach rather than on innovation?

The McCain-Clinton gas holiday proposal is a perfect example of what energy expert Peter Schwartz of Global Business Network describes as the true American energy policy today: “Maximize demand, minimize supply and buy the rest from the people who hate us the most.”

I'm not surprised that Hillary Clinton would get on board with this (remember how her husband drew down the Strategic Petroleum Reserve back in 2000 when oil was going for $40 a barrel?), but somehow I expected better from McCain. Will Obama be able to explain to ordinary Americans why saving them maybe $50 on gas is such a stoopid idea?

Interstim update

As they used to say of Ragu spaghetti sauce (or was it Prego?): It's in there. Last Monday, we woke up at 4:45 a.m., so we could be at the hospital by 6:00. I was still on the fence as whether to put in the permanent device, but it seemed like there wasn't any downside to going ahead (except possibly for the cost to my HMO), so I did. Unlike the initial implant, I got to be under general anaesthesia, which put me a bit more at ease. By 8:30, I was waking up in the recovery room and thinking about how great that first cup of coffee would taste.

To control the permanent device, I received the small blue gizmo in the picture. It's got a small LCD screen on the front and a plug-in antenna for communicating with the Interstim device. I place the end of the antenna over the small bulge in my tush where the device lives, hit the 'Sync' button on the blue gizmo, and if I've positioned the antenna correctly, the blue gizmo beeps and I can switch between the 4 stimulation programs stored in the blue gizmo, as well as increase or decrease the stimulation level by small increments. Cool.

The four programs stored in the blue gizmo were put there for me by the Medtronic guy, based on what worked for me during the trial period. Because the permanent set-up is more sophisticated than the trial device, it can do some additional tricks. Most notably, the permanent device can be programmed to cycle from full stimulation to no stimulation and back to full stimulation over a short period of time. This prevents the nerves from acclimating to a constant level of stimulation, which would diminish the device's effectiveness. The 4 programs on my blue gizmo were all set up this way. Unfortunately, though, this ended up being a significant annoyance, because I was feeling the stimiulation not just in nether regions, but also in my right foot. When I'd be off my feet, say at work, I could feel and even see my foot flexing and relaxing as the level of stimulation cycled up and down.

This cycling wasn't something I could control from my device, but yesterday I had the urologist's nurse Jenny (or possibly Jenni) turn it off. See, the urologist has an even cooler big blue gizmo for controlling my little blue gizmo. It looks a bit like an overgrown Palm Pilot, complete with stylus. Jenny (or possibly Jenni) taps on the big blue gizmo's screen, and it wirelessly transmits instructions to my little blue gizmo, turning off the cycling in my 4 programs. Again, cool.

The thing that's less cool is that I'm still not sure if it's helping or not. I still pee as often as I used to (maybe 15 times in an ordinary day?). I still have to go urgently. I still can't quite empty completely, even if I spend ten minutes in the can pressing my hand into my lower abdomen. I'd say the urgency is somewhat lower, meaning when I feel like I hafta go, I have about 8 seconds to get to the bathroom instead of 5. But I also feel like my bowel function has improved slightly as well, though that has at least something to do with my more regular (get it? regular?) use of Miralax (which I am pleased to be able to now purchase OTC, which allows me to use the brand-name stuff instead of the generic stuff I got when it was prescription-only, which seemed to have a bitter taste and which seemed to leave me comically flatulent).

I got my staples out on Tuesday, and by next week I'll be able to bend, stretch, and swim as much as I like. This is good, because since getting the trial device a few weeks ago, I haven't done much by way of physical activity, and I can tell: I'm a bit wobblier, stiffer, and flabbier than I was a few weeks ago.

So the jury is still out on this thing, but at least I feel like I'm close to getting back to ordinary life, such as it is/was. This is good, too, because it's finally spring, and not a moment too soon.

On the bubble

Today's the 11th day of my Interstim test drive; on Monday, I either get a permanent implant or I get the wires removed. I'm still not sure which way it will go. The very helpful gent from Medtronic has taken me through maybe ten different configurations, but to my mind, there hasn't been a 50% improvement in my symptoms.

I've gone over my pee-pee journal to count how many times I was going in a day before as opposed to after, thought about changes in urgency and frequency, and with this last configuration I started yesterday, I reckon I'm maybe 40% better. I couldn't explain exactly how I come up with that figure, especially since I really can't remember what it was like to have a well-trained bladder. When I was 18, how often did I pee? Except I didn't drink either coffee (my favorite brown hot beverage) or beer (my favorite cold brown beverage) then. What, exactly, is better? For one thing, when I went in to get my staples removed yesterday, my post-void residual (the amount of pee left in my bladder after peeing as much as I could pee, as measured by ultrasound) was about 175 ccs-- about the same as it was before I got the device.

I talked to the Medtronic guy tonite, and he said that we've really tried out all the settings we could achieve with the temporary external gizmo, that the permanent gizmo could be configured in more ways, but suggested that I stay with the current setting until tomorrow evening, and then just disconnect the thing, to refresh my recollection of where I started. That makes sense to me. As much as I am attracted to the sheer niftyness of having a super-special gizmo implanted in my butt, I really only want it if it's going to work.

On the other hand, my pee-pee diary shows that I last went at 4:20, and it's now almost four hours and two beers later. Hmm.

On the other

In the news: big copays for MS drugs

Today's NYT reports on the increasing prevalence of big, fat copays for expensive drugs like Copaxone, Avonex, and Betaseron. Snip:

The system, often called Tier 4, began in earnest with Medicare drug plans and spread rapidly. It is now incorporated into 86 percent of those plans. Some have even higher co-payments for certain drugs, a Tier 5.
Now Tier 4 is also showing up in insurance that people buy on their own or acquire through employers, said Dan Mendelson of Avalere Health, a research organization in Washington. It is the fastest-growing segment in private insurance, Mr. Mendelson said. Five years ago it was virtually nonexistent in private plans, he said. Now 10 percent of them have Tier 4 drug categories.

By way of an example, a woman insured by Kaiser Permanente who had been paying $20 per month for Copaxone, was asked to pay $325. Kaiser's suspended the increased copay for now, but next year she'll need to change plans or pay up. Raising copays for a few sick people means many healthier people will pay less (duh), but, as a practical matter, also means the health insurance safety net is getting smaller.

Between Rebif and the various other drugs I take for the symptoms of MS, I pay about $120 a month in copays. That's pretty easy to manage-- it's money we might otherwise use to go out to dinner or to save for a vacation, but it's not a big sacrifice. But if that went up to $500 per month, we'd be in some trouble. My wife probably wouldn't be able to go back to school for a nursing degree. We probably wouldn't be saving as much for retirement. If it went up to $1,000 per month, we'd be in serious trouble. I'd start thinking about which meds I could live without. We'd probably think about selling the house and moving somewhere substantially cheaper.

On one hand, this makes me nuts: the only way I can afford the care I need is if healthy people subsidize it, and it seems perfectly rational for you healthy people to want not to subsidize my care. On the other hand, I'm reasonably confident that I'd probably be just fine, because the quality of my life and everybody else's doesn't have much to do with how much money or stuff we have, as long as we can take care of the basics. Which, of course, is exactly what a sick person is supposed to say, because it's one of the best arguments I can think of to explain why Joe Healthypants down the hall should pay in insurance premiums twice what he actually uses in services, instead of buying himself a new snowblower.

Link to NYT.

Convalescent

That's me resplendent in red sweat pants and tighty-whities, sporting my Interstim test unit. Aside from whatever benefit I get (or don't) from the device, I feel like my post-op convalescence is giving me an advance peek of what it might be like if my MS progresses in a significant way.

I'm needing significant help getting dressed and undressed, and I'm not able to provide much help taking the dogs out or making dinner. And because I just happen to have some work that's well-suited to doing at home, I'm home alone except for the dogs. I was a little weird to say goodbye to Carmen this morning as she headed off to school for the day, not intending to be back until 6 tonite. If for only a few days, I'm getting a taste of being a needy, grateful, self-conscious care-givee.

I'm incredibly lucky to be married to a natural-born caregiver. Even so, I wonder about how long she'd be able to look after me, how long her incredible loyalty would hold up. This less than 48 hours after surgery. Illness must have an incredible power to alter the dynamic of a marriage. It's obvious, I know, but it seems true to me in a new way today.

Interstim: further down the rabbit-hole

I'm at work, hiding out in my office. I had the initial surgery yesterday, and today I'm wearing on my belt the garage-door-opener-sized test gizmo. I'm almost over the initial weirdness of being hooked up to the gizmo via a wire that disappears into my lower back, and the dull ache from the incision sites is fading into the background. I've got two of the wires back there, but I'm starting out with only one wire connected, and the box is delivering a very low level zap to the wire coming out of the right side of my back. The sensation from the zap is a rapid, gentle kind of tapping in my crotch. I'll receive my next instructions from the Medtronic rep tomorrow.

I spent a while thinking up a goofy lie to explain the box to any coworker who asks: I'm a product tester for a new kind of iPod, one that connects directly to your nervous system. Actually, the wire connecting my crotch to the test gizmo is iPod white, but the gizmo is decidedly not a sleek, stylish Apple invention. It's brown, with a couple dials on top, some switches and dials hidden under a removeable little door on the side, and little blinking green LED.

Bladder blather

Lucky me, someone else cancelled their Interstim procedure, so I'll be getting mine April 7 instead of some time in July. That's good news, because the more I think about it, the more it seems as though I'm a hostage to my bladder.

I've been perusing some of the patient information/promotion materials I got about the device from my urologist, featuring accounts from patients who've gotten an Interstim. Many of them describe how their bladders were essentially ruining their lives, causing constant anxiety, preventing them from doing things they wanted to do, and leaving them isolated and grumpy. That sounds familiar. I spend a lot of time and energy thinking about peeing: Where's the nearest bathroom? How far away is it? How soon am I likely to need to use it? Can I make it there in time? If not, will I be able to put on a new pad? Do I have a new pad? Did I remember to leave some in this car?

Here's a frinstance: before I get the Interstim, I have to get an ultrasound of my kidneys and bladder. I'm having it done on Friday morning. The instructions are to fast for 12 hours before the ultrasound, and to drink 32 ounces of water an hour or so before going to the clinic. Drinking the water is supposed to help me arrive for my ultrasound with my bladder "uncomfortably full," according to the friendly people at the lab who called yesterday. It didn't really occur to me until after I'd hung up that I haven't really had an uncomfortably full bladder for a number of years, that my bladder tends to empty itself long before that point. So now I probably need to call back and bring to their attention that the reason I'm coming in for an ultrasound is that I'm more or less incontinent.

If this thing works, it will be very interesting to see just how different life becomes when I don't have to worry about pee and peeing.

Worm eggs for MS?

I think I blogged on it a while ago, but my neurologist is conducting a teeny tiny study of whether ingesting the eggs of itty bitty worms can help MS patients. According to this newspaper article, a similar study in Argentina had encouraging results:

The eggs hatch into larvae, the size of an eyelash, that stick to the inside of the intestine. In killing the larvae, the body unleashes an extra dose of regulatory T cells, which dampen overactive immune cells. Existing multiple sclerosis treatments, all of them injections, also try to block overactive immune cells. But with the worm therapy, "instead of knocking down the bad parts of the immune system, we're pushing up the good parts," Fleming said.
....
A study in Argentina backed up that hunch. It compared a dozen multiple sclerosis patients who were naturally infected with a similar worm with a dozen worm-free patients. Over four years, those with the worms had 90 percent fewer flare-ups and brain lesions.

What's new, what's old

Hello, again. I've been on hiatus for a while because over the last five months or so, I've either not really had anything interesting to say (often) or I've been too wrapped up in the business at hand to step away from it and blog (much less often).

It won't really take that long to catch up. Since last October, I stopped smoking pot and started baking and eating pot brownies, my dog developed Addison's disease and almost died, we broke a record for total snowfall in a season, and my mother-in-law was diagnosed with, and had surgery for, breast cancer.

What brought me back was this morning's visit to the urologist. Over the last couple years, my bladder symptoms (urgency + frequency) have gotten worse, although it's happened so slowly that it almost hadn't registered. Today, though, the urologist told me that he's pretty much used every pharmaceutical trick in his bag and doesn't have any new drug options for me. Instead, he said he thinks I'm a good candidate for getting a gizmo called Interstim (a.k.a. "the bladder pacemaker") implanted.

Interstim delivers a contant, mild electric charge to nerves near the base of the spine. What good will that do? The urologist explained that Insterstim fixes bladder function similar to the way a good hard smack fixes an old TV: it's not clear why it works, but it does. Here's how the process goes: First, they would implant the wires in a procedure during which I'd be sedated but awake. There are 4 wires, and they go in near some nerves at the base of the spine. After that, I'd go thru a two-week trial period during which the wires would be connected to a pager-sized control gizmo. The control gizmo can turn each of the four wires on and off independently and, I think, change the polarity of the charge sent to each wire. For two weeks, working with someone at the hospital, I'd go through different settings on the gizmo while keeping a pee-pee diary. After two weeks, they look at the results. If I've gotten at least a 50%benefit from the gizmo, they replace the pager-gizmo with a device that would be permanently implanted under the skin just north of my behind. If I haven't gotten a 50% benefit, the wires come out and I go back to my non-bionic bladder.

Cool, huh? There's a waiting list right now, so I wouldn't be able to get hooked up until July, but I told them to put my name on the list. The urologist says there's about an 80% chance that I'll see a dramatic improvement and a 20% chance that it won't do a thing for me. There's slightly larger than an Oreo under my skin, but not nearly as much as the Botox injection. And supposedly, my HMO will pay for it with minimal fussing (we'll just see about that).

So now we're all caught up. That wasn't so bad.