Health policy: more young adults uninsured

One-third of Georgians ages 18-24 are uninsured, and private health insurance coverage has declined 11 percent among this age group in the past five years, according to a new study from the J. Mack Robinson College of Business at Georgia State University.

Aside from the immediate cost of providing care for these uninsured young adults, there are long-term implications for the health-care industry, researchers say. The uninsured are less likely to get primary and preventive services, which means they may end up with more advanced and costly illnesses later in life. For those who do end up in a major accident, they could become "uninsurable" for life. "The worst-case scenario is they decide not to invest in insurance and they have a terrible accident and become uninsurable for life," said Minyard, alluding to the difficulty people with major health problems have in buying individual health insurance plans.

And if you're an uninsured 21-year-old who develops MS, what do you do? When it happened to me, I decided to get married and go to law school. So far, so good. If it happens to you, I'll be happy to lend you my LSAT study books.

Link to item at MSNBC.com
technorati tag: multiple sclerosis

MS bladder therapies: a good review of the basics

I stumbled across this review in Nature Clinical Practice Urology of how MS affects bladder function and what can be done to help. Includes a discussion of Botox injections into the bladder detrusor:

Voiding-diary data are showing exceptional clinical efficacy for BoNT/A, with significant improvements compared to baseline of urinary urgency, frequency and incontinence episodes at 4 and 16 weeks postinjection. Urodynamic parameters, namely maximum cystometric capacity and detrusor pressures during filling, have also shown significant and sustained improvement.64 Because there is an increased incidence in incomplete bladder emptying following treatment in patients with neurogenic bladder dysfunction, patients must be willing and able to perform [intermittent self-cath], if they are not already doing so.

The full article, not just an abstract, is available for free here, but you'll need to register.
technorati tag: multiple sclerosis

Health policy: NYT on "concierge care" for those who can afford it

NYT's health care reporting continues with a piece about "concierge care":

These doctors charge fees as high as $10,000 a year, depending on the services promised. The majority charge $1,500 to $2,000. Basic services consist of same-day or next-day appointments and 24-hour telephone access to the doctor. The most expensive may also promise the doctor will make home visits, deliver medications and accompany patients on visits to other doctors.

"Concierge care is like a new country club for the rich," Representative Pete Stark, Democrat of California, said at a joint economic committee hearing in Congress last year. "The danger is that if a large number of doctors choose to open up these types of practices, the health care system will become even more inequitable than it is today."

Link (free reg req'd)

Tag cloud: interesting

My new tag cloud is brought to you courtesy of tagcloud.com. I thought it might be an easy shortcut to generating tags, because Blogger doesn't seem to support an easy method for generating tags.

Tagcloud generates the cloud from my RSS feed, which is nifty, though somewhat problematic. The initial 100-item cloud included items like "obviously" and "apparently" and "reg req'd". So apparently, I use the word "apparently" too much, and, obviously, "reg req'd" isn't really a topic of interest.

So some editing is necessary. But once the editing is done, the tag cloud seems to emphasize the extent to which one repeats oneself. Anyway, now I've got some functional tags for finding stuff about certain stuff. ("Stuff" was another item I had to take out of the tag cloud.)

Current Events: Cat sails to France

I'm not really a cat person, probably because I didn't grow up around cats, but I tip my hat to Emily, who made her way from Wisconsin to France:

Lesley McElhiney now figures her cat went prowling around a paper warehouse near home and ended up in a cargo container that went by ship across the Atlantic Ocean and was trucked to Nancy, a city in northeastern France near the border with Germany. Employees at a French lamination company found her in the container, checked her tags and called Emily's veterinarian, John Palarski, in Kimberly, just east of Appleton. Palarski called the McElhineys Monday to tell them their pet was safe, if a little hungry.

"It probably had access to food and water," Palarski said. "I doubt if it went three weeks without it. There must have been a lot of mice on the boat. Even if it was in the cargo department, you would assume there was water down there. She had to have something."

Link to story at Chicago Tribune (free reg req'd)

Oh my gawd: awake during surgery, but paralyzed

Can you imagine?

The American Society of Anesthesiologists, meeting in Atlanta, approved the group's first-ever standards on preventing a rare but terrifying situation in which patients wake up during surgery and sometimes feel excruciating pain without being able to cry out. Such awakenings occur in one or two cases out of every 1,000, the group said. But the phenomenon received press coverage following some lawsuits by patients, and after the Joint Commission on Accreditation of Healthcare Organizations last year urged hospitals to better monitor patients for the problem and ask them about it after surgery.

Carol Weihrer, who won an out-of-court settlement after her anesthesia failed during a five-hour eye surgery in 1998, was disappointed. Now a patient advocate, she said that technology that might prevent a patient's suffering should be used and also called for the society to help establish a registry for case reports of surgical awareness. "It's nothing," Weihrer said of the society's action. The 54-year-old Virginia woman was awake but paralyzed while doctors cut and gouged to remove her right eye seven years ago.

Link to article in Seattle Post Intelligencer.

Politics: Harriet Miers, "Bar weenie"

Non-lawyers may not appreciate the relative insignificance of what have been touted as the jewels in the crown of Miers's resume: her election to lead the Dallas and American Bar Associations. I belong to my state's bar association, because a lawyer can't practice law in my state unless he or she is a member. Back when I was in private practice, I belonged to the bar association of the county in which I live, and to the American Bar Association. It wasn't required, but between the two, I got access to some decent seminars, a magazine, and discounts on Avis car rentals.

Each year, I receive and complete a ballot for state bar president. I read the candidate information and I look to see who endorses whom. I do this because I think it matters who's running the state bar. Each year, I have to send the bar a big check to cover membership dues, and the bar, in turn, takes the lead in many of the legal issues that arise in my state. I wish I didn't have to belong, but because I do, I'm interested in who's in charge. On the other hand, I had no idea who ran the county bar or the ABA when I was a member, because it just didn't ever seem worth my time to care.

A piece at Slate.com by Mark Obbie nails it:

Guess who seeks election to [lead the voluntary bar associations]. Not the busiest, in-demand lions of the bar. Instead, it's usually the second stringers, the runners-up in the lawyer game. Real lawyers, for the most part, snicker about "bar weenies"—much as they did about the goofs in high school who ran for class president. Does David Boies spend his $800-an-hour time going to committee meetings and wrangling over the ABA's next convention schedule? Hardly. He might deign to give a speech at a bar gathering if he can fit it into his busy trial schedule. But bar weenies—their slightly kinder name is bar junkies—are the ones holding the Town Car door open for Boies when he arrives at the hotel. And when they're not doing that, they're jabbering endlessly about legal-regulatory policy questions that even most lawyers find stupefying.

Link

"Divine protection," not health insurance

An article in the Washington Post reports on groups of evangelical Christians who have formed a kind of health insurance co-op, paying into a common pot of money to cover members' medical expenses. It's an interesting counterpoint to the recent NYT article about the growing financial risk borne by those who have health insurance:

Huff and his family are among the 60,000 members of Medi-Share, the largest of a little-known group of nonprofit organizations that market themselves as faith-based alternatives to health insurance. The half-dozen plans, which claim a total membership of more than 120,000 Americans, are especially popular in the South. The appeal of these 'church plans,' as they are known in the insurance industry, is both economic and religious. Because their monthly cost is roughly half that of conventional health insurance premiums, they appeal to those who find medical insurance difficult or impossible to afford. And because their membership is strictly limited to evangelical Christians certified as regular churchgoers by their pastors, they cater to people opposed to 'subsidizing high-risk, sinful lifestyles,' in the words of Medi-Share's Web site.

"These plans function just like health insurance, but they operate in a regulatory black hole," said Mila Kofman, an assistant research professor at Georgetown University's Health Policy Institute. "There is no accountability, no oversight, and the people who participate have no protection." Unlike insurance companies, which are required to have reserve funds to pay claims, church plans do not maintain reserves.

Link

Journal: I heart the Cool Moms

Each day, during my daily commute, I end up stopped at a red light next to this day care center that obviously caters to the Cool Moms. Each day, I watch the Cool Moms walk their tots from their Subarus to the door. These are tots, I'm sure, with cool old-timey names like Ella and Gus. The moms and tots are dressed in hip, sensible layers of woolly and fleecy things, and they look happy.

My wife and I have decided not to have kids. We've been married for 13 years (!) now, and it's been an ongoing conversation with us, but as our biological clocks start to run out (we're both 35), we agree: we don't have the time or energy, we don't feel a baby-shaped void in our lives, we're living happy lives without kids, etc.

And yet I think both my wife and I see each other as a potential perfect parent. And yet it's an indescribable frustration to me that my illness should play such a large part in this decision (and it does). And yet I'm envious of the Cool Moms and their Subarus and woolly and fleecy get-ups and whatever it is that seems to make them so happy.

Maybe I need to take a different route to work.

NYT: When health insurance is not a safeguard

The NYT's series on health care continues with a piece about the increasing gap in the protection afforded by health insurance:

After decades in which private and government insurance covered a progressively larger share of medical expenses, insurance companies are now shifting more costs to consumers, in the form of much higher deductibles, co-payments or premiums. At the same time, Americans are saving less and carrying higher levels of household debt, and even insured families are exposed to medical expenses that did not exist a decade ago. Many, like the Dorsetts, do not realize how vulnerable they are until the bills arrive. Lawyers and accountants say that for the more than 1.5 million American families who filed for bankruptcy protection last year, the most common causes were job loss and medical expenses.

Link (free reg req'd).

The political consequences of new techniques for obtaining embryonic stem cells

At Slate.com, William Saletan lays out the ethical and political implications of research suggesting that scientists might be able to harvest stem cells from an embryo without harming it ("biopsy"):

If you've opposed federal funding of [embryonic cell] research on the grounds that embryos shouldn't be killed, biopsy solves your problem. The only people bound to oppose biopsy are those who 1) oppose [in vitro fertilization] because it's artificial or 2) object to exposing embryos to the same risks involved in [pre-implantation genetic diagnosis]. The billion-dollar question is which way President Bush will go. His past statements indicate that his concern is embryo killing and that he's looking for a way forward. Both factors suggest that he'd allow funding of research on ES lines derived from biopsy.

Link.

"Consumer-directed" health plans: providing the consumer with just enough rope

The Washington Post reports about the emergence of high-deductible "consumer-directed" health insurance plans:

Today's consumer-driven health plans typically require deductibles of $1,000 to $2,000 for individual coverage and $2,000 to $4,000 for family coverage, after premiums, before the insurance policy kicks in. Many policies also require coinsurance payments after deductibles are met, and patients seeking care out of network face steep charges. Now, as millions of workers enter open-enrollment season to choose next year's health insurance benefits, many will consider high-deductible policies for the first time. According to the Kaiser Family Foundation, only 5 percent of large employers offered such policies in 2003; this year, 20 percent did, and more will do so next year.

For workers who've seen premiums jump sharply for HMOs, PPOs and point-of-service offerings, the lure of lower premiums and fewer restrictions on provider selection can be tantalizing. But those opting for such insurance "should expect to have less health coverage," says Karen Pollitz, project director at Georgetown University's Health Policy Institute.

Link.

Journal: Going out, and art

Last night, my wife and I went out to see The Decemberists play a show, the first show we've been to in maybe a year. Their Melvilleian pop was charming, and they played a great show, but I felt pretty out-of-place. The show was at an old movie theater in which the bathrooms are in the basement, which meant that not only did I have to do the excuse-me-pardon-me-excuse-me-pardon-me thing to get to the aisle four times during the show, I also had to haul my sorry ass up and down the stairs four times. Also, everyone in the theater was standing, so if I wanted to see anything (and there was a lot to see: a six-piece ensemble fronted by a man wearing a pink-and-white-striped suit coat), I had to stand. Or, if I didn't want to stand, I could truck up to the balcony where the view was unobstructed, but each trip to the men's room required twice as many stairs. And this, I suppose, is why I haven't been out to a show in a year.

It's an example of how I sometimes feel MS has cut me off from experiencing art: I used to be a voracious reader, but I find I lack the concentration to stick with anything longer than a New Yorker cartoon. I used to enjoy making (mediocre) music, but I lost a lot of sensation and manual dexterity in my fingers, making it frustrating to sit down at the piano or pick up a guitar. I used to do some printmaking from time to time, but I haven't felt like I had the stamina, time, or inspiration for it. I'm reluctant to go out to see art in museums or galleries because it means extended periods of standing around and walking. Unfortunately, art increasingly seems like a luxury I don't have the time, energy, or motivation for; tending to the necessities comes first.

Here's a bright spot, though: for whatever reason (MS, maturity, contaminated drinking water?), I think art elicits a much stronger emotional response from me than it used to. I've had an iPod for a year or so now, and the experience of listening to good music through a good set of headphones can be amazing; it can, and regularly does, make me cry.

technorati tag: multiple sclerosis

Journal: blogging and catharsis

From the Washington Post:

Nearly half of bloggers consider it a form of therapy, according to a recent survey sponsored by America Online Inc. And although some psychologists question the use of the Internet for therapy, one hospital in High Point, N.C., started devoting space to patients' blogs on its Web site, a practice Inova Fairfax Hospital is also considering.

The rest of the article goes on to talk about the risks posed by taking one's personal information to the internets, how you should worry about identity theft, potential employers checking out your blogs, etc. What I think is so interesting is that in addition to what you might think is the most natural fodder for the blogosphere--politics--there is this huge chunk of the blogosphere that is about something much more personal, something not borne of conviction, but of ambivalence: illness blogs. Like this one.

To me, this means there is a large group of people, myself included, who are having trouble decoding the modern experience of illness using the traditional tools (medical professionals, family, faith, friends, etc.). I don't think it's just about catharsis, really. After all, I can write about the silver-dollar-sized purple blob that showed up on my penis the morning after the last time I gave myself an injection of papaverine (for those of us who flunked Viagra), and that's sorta cathartic, I guess, but there's more to it than just the catharsis I feel after talking about the ridiculous lengths to which I must go to deal with my MS-related erectile dysfunction. It's also about trying to help fill in some of the gaps in means available for decoding MS, and catharsis alone isn't going to fill those gaps. It's part cathartic performance but the essential ingredient is some kind of community, even if it's sometimes silent.

Cyber-Catharsis: Bloggers Use Web Sites as Therapy

In today's NYT: The impenetrable mystery of medical billing

Today, another article in the NYT's series on being a patient, this time on medical billing. Snip:

The paperwork nightmare started for Ms. Mayer when her oncologist switched hospitals. Everything suddenly seemed to need a justification, or a new piece of paper with an authorization. The stacks of papers, folders and Post-It notes related to Ms. Mayer's treatment have started to take over her house. They fill manila envelopes, boxes and files, which fill closets. They spill from the dining room table onto chairs.

"You can't just be sick," she said. "You have to be sick and be drowning in paperwork." So overwhelming has the paperwork grown that Ms. Mayer has considered giving up and ceasing all treatment because of the bureaucratic hassle that accompanies it. "It's comical, it's unbelievable," she said. "And I think to myself, 'What if I was an elderly person, or a single person? What if I wasn't healthy enough to handle it?' "

Link to article in NYT (free reg req'd)
technorati tag: multiple sclerosis

Study: Beta interferons linked to low birth weight, miscarriages

From an article about the Toronto-based study:

The study involved 64 pregnancies in 46 women. Some of these women were taking beta interferon during pregnancy, others had stopped drug treatment one month prior to conception and a third group comprised healthy women not on drug therapy.

"The women who received the beta interferon had more miscarriages," Koren says. "And the babies that were born were substantially smaller."

Only 55 per cent of pregnancies in the beta interferon group resulted in live births, compared with 81 per cent in the group that had stopped drug therapy before conception, and 90 per cent in the healthy group.

Link to article at Macleans.com.
technorati tag: multiple sclerosis

Journal: weekend self-medicating

This weekend, some old friends came up to visit, including a guy who's a regular pot-smoker. Over the weekend, we all enjoyed some good-natured substance abuse, a recurring theme in our collective friendships.

I'd been kind of a pot-head for several years since I finished school, not because I thought I was helping my MS any, but because it felt good to get really high. I'd eased off in recent years, though. I'd noticed I was having some lapses in short-term memory, but more importantly, I noticed that when I was high and nobody else was, I was a crashing bore.

Over the course of the last several months I'd been having increasing trouble with neuropathic pain, a dull, burning, pain in the backs of my legs that made it a real chore to sit at my desk at work in the afternoons. I'd also started getting the burning pain in the soles of my feet. I was curious how pot would affect me and the pain.

I was disappointed. Initially, I just felt plain old high, and the euphoria either replaces the pain sensation, or it just wasn't registering. That was nice. After a bit, I noticed that instead of the burning in my legs, I felt an intense numbness, almost like a vibration. But then a couple hours out, when I went to bed, the high sorta wore off and the numbness in my legs turned into an uncomfortable sensation of heat, which kept me awake for a while.

So it's totally unscientific, and my experience could have been colored by extreme fatigue, by forgetting to take sufficient Neurontin during the day, or by the large quantities of ice cream I ingested before going to bed. But I was hoping to drift off into a sound sleep and wake up refreshed and slightly loopy, the way I remembered it. Maybe if I'd remembered to fire up the lava lamp...

technorati tag: multiple sclerosis

MS and identity: dual citizenship, but without a country?

In Illness As A Metaphor, Susan Sontag wrote:

Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

I sometimes feel as though I switch passports so often that I don't know where I really live, that I don't feel at home in either kingdom. Thursday, I parked in a disabled parking space before heading to my full-time job. Yesterday, I called in sick because I had a bad head cold. Today, I'm sitting at home while my wife and friends stroll about at the farmer's market downtown.

Today, in The Guardian, there's a piece by Hilary Freeman, a 34-year-old woman with a fairly mild case of MS, that touches on these themes:

Just as someone with anorexia sees a fat person when they look into the mirror, so I see a healthy one. My self-image has never quite caught up with the knowledge of my condition. I have mild MS symptoms — fatigue, tingling, blurred vision, a thumb that sometimes shoots out of its own accord — but nothing that has stopped me, now aged 34, from living a normal life. Yet I find it nigh impossible to get insurance or to pass a medical. So who am I, a sick person or a well person? Disabled or able-bodied? The truth is, I don’t know. And neither, it appears, does anyone else.

Link.
technorati tag: multiple sclerosis

Factors related to employment status changes in individuals with multiple sclerosis.

In a sample of 50 individuals with multiple sclerosis (MS), participants able to work full-time ('W'), those who reduced their hours ('CB') and those who were unemployed ('NW') were compared on demographic and disease variables and symptoms that the participants identified as being responsible for their work status change. The NW group had significantly greater physical disability than the other two groups and significantly more fatigue than the W group. The CB group had significantly more years of education and higher occupational prestige ratings than the NW group. The W group reported significantly greater mood disturbance compared with the NW group. Employment status was unrelated to age, gender, full scale IQ estimate, disease duration, diagnosis duration or cognitive functioning. Ninety per cent of the CB group reported that fatigue was a primary symptom responsible for their work status change, whereas 86% of the NW group reported that broad physical/neurological symptoms were responsible for their change in work status.


Entrez PubMed

Gimpy ethics: Using my parking tag for good, not evil?

I've had a disabled parking permit for several months now. Initially, I asked my doctor about getting one because I'd had some trouble with distant parking spaces at places like the supermarket and Target. Getting to the store wasn't usually any trouble, but getting back to the car was: after wandering around the grocery store for an hour and a half trying to find where they hide the rice cakes, I'd be plenty tuckered out, especially in the summer months.

I made increasing use of my cripple tags (can I call them that? please? the phrase really just rolls off the tongue) over the summer. I also started making occasional use of a cane. Well, actually, it's just a 3-foot length of dowel my father-in-law had used to prop up the tail gate on his old minivan after it stopped staying up on its own. At first, I was pretty shy about it, but I've gotten a little more comfortable with it.

Up until recently, I'd been paying $100 a month to park in the parking ramp under the building where my office is located. I work downtown, and parking is awful; everyone who works downtown has to pay for a parking space (unless their employer pays for one, which mine does not). The ramp is pretty convenient, and although it has precious few designated spaces for the disabled, it was never very difficult to get a space that was within 100 feet of an elevator to the main floor.

There are a number of metered parking spaces conveniently located in front of my building. Where I live, if you've got a cripple tag (please?), you can park free in a metered spot for as long as you want (as long as it's more than a 30-minute meter). This past month, I gave up my paid parking space, and started parking out front with my cripple tag. By doing so, I've effectively given myself a raise of about $1,000 a year.

Am I a bad person? Consider:
1. I can afford $1,000 a year for parking, though it's definitely not chump change to me (hey, I'm a guy who washes and reuses ziplock bags).
2. The city, in compliance with state law, is essentially subsidizing my parking.
3. I notice that I'm not the only person who uses the metered spaces out front in this way.
4. If I could park in the ramp for free, I would (it's warm and dry), so it's not that I really prefer parking at the meter, I prefer parking at the meter for free.
5. I've been carrying the cane every time I park with the cripple tags, not because I always need to use the cane, but because I feel like it authenticates my entitlement to park with the cripple tags. If I was parking in the ramp, I probably wouldn't carry the cane to work every day. Incidentally, I don't use the cane in the office, just getting into and out of it, and I mostly need it at the end of the day when I'm at my wobbliest.
technorati tag: multiple sclerosis

Journal: Can a professional with MS have a vacation?

It sure seems like I can't. I took a nice 4-day weekend to celebrate my birthday and to generally decompress after some stressful weeks at work. It was lovely- went up North and spend some time sitting in a row bow aimlessly holding a fishing pole. But like a lot of other people, my work is my work; nobody else is going to dig in and do my work while I'm gone. Taking a vacation just means shifting work to a different time. You can either try and get ahead of things before you leave, and risk getting so pooped out you can't enjoy a vacation, or you can accept the fact that you'll return to a desk/inbox/voice mail account that's jammed with work, meaning you'll have to work that much harder when you come back.

This isn't unique to MS, but my ability to successfully shift work around to accommodate a vacation is lessened. I'm just not capable of productive 12-hour days. It means I'm more likely to end up working on weekends to catch up, which, of course, leaves me feeling like I could really use a goddamn vacation.

technorati tag: multiple sclerosis

Republican legislator in Wisconsin authors medical marijuana bill

The bill would legalize the possession and use a limited quantity of marijuana, with the approval of a physician. This press release cites 75% public approval of the measure, which apparently has not yet been formally introduced (contrary to the press release).

What isn't being touted, however, is any mechanism in the bill for qualifying patients to obtain pot. Seems like patients who would be allowed to use and possess pot would still be left to get the stuff by illegal means. Isn't that kind of a problem? Or are we implicitly acknowledging the prevalence of cultivation and sale for illegal, recreational use: Jeez, everybody knows somebody who knows somebody who could score some weed, right? Which is maybe why, despite the overwhelming public support, this bill probably won't go anywhere in a state legislature that's controlled by social conservatives, but a bill banning human cloning is treated with great urgency.