Half Changed World

So, I’m a little behind the gang, but I’ve added the “No Princess Fights Alone”  button to the sidebar, in honor of the incomparable Susan (WhyMommy) of Toddler Planet.  Like many of the the others who posted this, I’ll donate to Crickett’s Answer for each comment on this post, say, by the end of February.  Because even as Susan has learned that her cancer has recurred yet again, she’s busy helping others.

It’s not fair that she has to deal with this.  But I was reminded today of Harlan Ellison’s introduction to Angry Candy, where he quotes Norman Spinrad as saying at his lover’s funeral “There is no justice inherent in the universe… except what we put there.  All the justice that exists, is what we make.  So let us show compassion and sense and courage, in Emily’s name.'”

I’m also thinking of Susan today because it’s the 25th anniversary of the Challenger disaster, and I love the passion with which she writes about her work for NASA and blogs about Women in Planetary Science.  I wrote my college admissions essay about coming to terms with the fact that I wasn’t actually going to be an astronaut, but I still have the Annie Leibovitz poster of Eileen Collins on my office wall.

The first thing to say about The Immortal Life of Henrietta Lacks by Rebecca Skloot is that it really is as good as the reviews say it is.  I put it on my library list when I first heard about it, but when I got it last week, I wasn’t sure I was really up for diving into a story about science and race.  But I was concerned if I didn’t start it right away, I wouldn’t finish it within the 3 weeks the library allows, and that I wouldn’t be able to renew it.  So I started reading it Friday evening… and finished less than 24 hours later.  I literally can’t think of the last nonfiction book that I read that way — it’s that good.

Henrietta Lacks developed cervical cancer in 1951, when she was just 30.  She lived in Baltimore, and so went for treatment at Johns Hopkins, which had a ward for black patients.  The doctors there removed her tumor and treated her with the best practice of the day — sewing radium packs into her cervix.  But the cancer recurred and spread rapidly to pretty much every organ in her body, and Lacks died.  But meanwhile, scientists at Hopkins had attempted to grow the cells from her tumor in culture — and discovered that unlike almost every other cells they had tried, these cells reproduced indefinitely.  The cell line was dubbed HeLa, and was freely shared with labs around the world, and has been critical to the biological sciences ever since.

Skloot carefully lays out multiple entwined stories around Henrietta Lacks and HeLa — what is known of her short life, how her children were affected by her early death, and again how they were affected years later when they learned about HeLa, and how Skloot came to win their trust, but also about the doctors who treated Lacks, the scientists who reproduced and shared her cells, the ways they were used, the development of modern medical ethical standards around informed consent, the history of abuse of black patients in the name of science, the discovery that most of the cell lines used in research had been contaminated by HeLa cells, and present day controversies over patenting genes and whether donors have any financial claim on products made from their tissues.  These multiple stories could easily have become too much, or totally confusing, but they don’t.

This story is fascinating in large part because the answers to the ethical questions are far from obvious.  There are some people in the book who were clearly wronged by scientists.  Henrietta’s oldest daughter had epilepsy, and was institutionalized, dying shortly after her mother.  Skloot goes with Henrietta’s younger daughter to that institution, and finds that she was almost certainly mistreated and experimented upon in ways that were harmful to her.   Scientists also injected HeLa cells into patients without informing them in order to see what would happen.  But Henrietta was not harmed by the cloning of her cells, and anyone who has benefited from a drug that has been tested in the past 50 years has benefited from the HeLa line.   The Lacks family has been very poor — and struggled to get health care at some times — and some people have gotten rich off of HeLa, but neither Hopkins nor the scientist who first reproduced the cells appears to be among them.  (Skloot has set up a foundation to benefit Henrietta Lacks’ descendents and you can also give directly to the family through their website.)  Medical ethics rules have gotten a lot stricter since 1951, but even today, it seems likely that something like this could well happen again — except that with more concern for patient privacy, it’s even less likely that the donor would ever know.

When N was born, I had the umbilical cord blood collected and donated to a public bank.  This means that it’s not reserved for our use, but in theory will be available to us if we ever need it and there’s any left.  (It’s not at clear to me that umbilical cord blood is actually useful, but it clearly has potential, so there didn’t seem to be any downside.)  It occurs to me that I have no idea what the conditions of my donation were — whether it’s only available for direct use by a patient, or if a researcher could apply for a portion of it.   I’d be happy to have it used in any way that would be helpful.

So, it’s terribly self-indulgent to be writing about lice when the health care vote is hanging in the balance, but I’ve already contacted my members and signed the MoveOn pledge to support primary challenges to any Dems who vote against health care reform (and that includes you Mr. Kucinich).  So I’m going to be self-indulgent and write about lice.

The good news is that only N appears to have them so far.

The bad news is that I’ve been itching like crazy since I saw the first one.

The good news is that T tells me I don’t have any.

The bad news is that I’m not sure I believe him.  We may have finally found the limit of my faith in my husband’s parenting ability — he can change diapers with the best of them, walk a colicky baby, bake cookies, find a pediatric dentist open for an emergency on a Saturday morning, name at least 50 different Pokemon, make lunches, chaperon a school trip, coach a soccer team, and more, but I’m not sure I believe him when he says I don’t have lice.  I can spot check my kids, but I haven’t figured out how to spot-check myself.

The good news is that none of us have long hair.

The bad news is we now have a garage freezer full of stuffed animals.

The good news is the boys are being brave and going to bed without their doggies without much complaint.

The bad news is that I’ve read Marion Winik’s lice essay, and so have absolutely no faith that we’ve resolved this.  (Actually, I’ve heard her read it, which is even more funny.)

The good news is that our school does not have a “no nit” policy and so N was able to go to school after we reported that we had treated him.

The bad news is that it does seem to have a “chemicals required” policy — T had to bring the box of the shampoo that we used.   The over the counter lice medicines aren’t too terribly toxic (versus the prescription ones, which are seriously vile), but there’s also increasing evidence that the lice are resistant to them.  My guess is that parents who find lice on their own kids and don’t want to use chemical treatments just won’t tell the school, which is somewhat counterproductive.

D watched us freaking out over the lice this morning, and finally asked “so, what do lice do to you if you don’t get rid of them?”  I told him that, mostly, they just itch, and they spread really easily.  He didn’t get why we had to use a toxic chemical (that includes a warning that people with asthma should avoid it) to get rid of something that just makes you itch.  I had to agree that he had a point.  Someday someone is going to file a HIPAA suit over lice policies and win.

Check out Girl2Woman.

I don't want to jinx us, and I certainly don't want to make light of the H1N1 flu, which has knocked several people of my acquaintance on their backsides, but so far this fall my family has been far less sick than in the average year.  And it's not just me — Fairfax county schools are reporting a 3.6 percent absenteeism rate, down from an average of 4.03 percent.  My theory is that everyone is being so good about washing hands, and not coming to work/school when they're sick, that they're passing around a lot fewer colds than usual.

[For the record, we did get both boys vaccinated last weekend.  The Fairfax health department mass clinic was amazingly efficient.   Vaccines have not yet been available for non-priority populations in this area, so neither T. nor I have been vaccinated.]

I listened to the health care debate in Congress on and off today while driving around to soccer fields and the mass flu vaccination site, and for the last hour I've had c-span on while sorting my clothes.  Although I know that there's still a long while to go before we actually get a law, and this bill is truly an act of sausage making, I'm still fascinated by the process.

Wow, the margin is a lot closer than I would have guessed– they've got exactly the 218 votes needed, with only one D not yet recorded.  I'll be interested to see how many of the Dems voting no are on the left.

Ok, here's the roll call results.  I'm not an expert on all members of Congress, but the only nos that jump out at me as being from the left are Kucinich, and maybe Artur Davis.

So, the big news of the evening was probably the passage of the Stupak amendment, which says that any insurance plan purchased through the "exchange" can't cover abortion.  My understanding is that this would NOT affect coverage under employer-provided insurance.   When I looked into this last year, I found out that about half of employer-provided plans do cover abortions. 

I think this is bad policy, for precisely the same reason that I think the Hyde amendment, which bans coverage of abortion under Medicaid, is bad policy.  It pushes abortions into the second trimester, which is more dangerous and more expensive.  But I'm not particularly surprised by it.  Fundamentally, I'd rather health insurance reform that didn't cover abortion than no health insurance reform.  And with such a thin margin, I'm not sure Pelosi had a choice.

The cynic in me wonders if maybe more of the public will holler when it's their insurance that is affected, not just poor women's coverage.

Update:  I listened to this NPR story on the Stupak amendment on my way home tonight, and now I'm even more confused.  They say that it doesn't prevent the exchange from including plans that cover abortion (although insurers would have to offer plans that were otherwise identical but didn't cover abortion) as long as you're paying with only your own money and don't receive a tax subsidy for the insurance.

So what I'm confused about is what are the rules for employer-provided insurance, which is also tax-subsidized.   Is it covered by the Stupak amendment?  Or are they pretending that employer-provided insurance isn't subsidized by taxpayers?

Update 2: Nice analysis of the D's who voted no from the NY Times.

I have a masters in public policy degree, and people sometimes ask me what exactly do you learn in a public policy program.  The answer is a little bit of lots of things — some economics, some statistics, some political science, how to write a 2 page memo, a fair amount on whatever topic you specialize in.  But probably the core skill they try to teach is about decision making with imperfect information.  And when I was in grad school, the main example they used to illustrate this issue is the 1976 swine flu vaccination decision.

The short version of it is that in February 1976 two soldiers at Fort Dix died from a swine flu, with a significant number of soldiers infected, and no exposure to pigs involved.  This was known to be related to the flu that had caused the 1918 pandemic, most people didn't have immunity to it, there was a theory of cyclical pandemics that suggested that we were overdue for one, and this strain had proven itself to have the ability to kill otherwise healthy young men.  The government asked the vaccine manufacturers to produce a vaccine, and in the fall, they swung into action with a full-fledged immunization drive.
As it turns out, swine flu did not reemerge in the fall, and the vaccination campaign was suspended (after about 40 million people had been vaccinated) when some of the vaccinated individuals came down with Guillain-Barré syndrome.

With hindsight, it's clear that the vaccination drive was unnecessary.   But with the information available, was it the wrong thing to do?   The people who made the decision still think it was the right call, writing: "When lives are at stake, it is better to err on the side of overreaction
than underreaction. Because of the unpredictability of influenza, responsible
public health leaders must be willing to take risks on behalf of the public."  My public policy classmates were less convinced, generally concluding that it made sense to produce the vaccine, but that they should have held off on immunizing people until there was some evidence that the swine flu had returned in the fall.  We felt the president had been pushed by politics to overreact to a low-probability but high risk event, fearing the headlines if tens of thousands died and the government had done nothing. 

Which brings us to today, and the headlines that half of Americans could be infected by the swine flu this year.  So, I'm glad that they're making vaccines.  But I'm not sure whether I want to line up — or line my kids up — to be immunized.  If you've got some time to spend thinking about what the vaccine strategy should be, the CDC is holding two web-based public forums to collect input and is looking for participants.

For us, a complicating factor is that D has a history of mild asthma.  And viral infections are his primary trigger.  He's been doing so well that we've had him off of the inhaled steroid, but I emailed his pediatrician to ask if she thought we should start him again with the start of the school year.  She responded that the risks of the inhaled steroid were very low, while the flu was an unknown, so she'd advise going ahead with the steroid.  So we're going to do that, and otherwise we're waiting and seeing.

What are you doing?  Will you get vaccinated if offered it?  Do you think your local school system is overreacting, underreacting, or getting it right?  Do you have a plan for what you'll do if schools are closed?

I work on other programs affecting low-income families, not health care.  But if Congress passes a true health care reform year, and no improvements in the programs that I work on, I'll consider it a success.  And if we get everything on my organization's policy agenda for 2009 but health care reform crashes and burns, I'll be disappointed.

Ezra Klein is blogging for the Washington Post now, and he's got two really good pieces today, one from this morning on why the CBO cost estimates are putting health care reform in danger and one from tonight on the Finance committee's revised plan. Basically, the budget office has told Congress, no, you're not going to save enough money with comparative effectiveness research and improved health care IT to pay for the expansions in coverage you want to see.  If you want real health care reform, the choices are to come up with the money from some other source (e.g taxes of one sort or another) or to get serious about cost-controls (e.g. take a chunk out of insurers' hides, and possibly out of doctors' as well.)  The no-hard-choices fairy isn't going to save you.

It's looking like Congress isn't really going to tackle these hard choices until after the Fourth of July recess.  Which means that the next few weeks are a great time to weigh in with your Representative and Senators about the need for real health care reform — including a public plan — and the need to pay for it with comprehensive tax reform.  If you really want single payer, go ahead and tell them that, but then tell them about what you think is second best, because single payer isn't happening, not this time around, and it won't be more likely in 10 years if this round collapses.

Are you paying attention to the health care debate, or have all the different bills made your eyes cross?  Are you waiting until things sort out a bit to pay attention?  What burning questions would you like answered?  As I said, this isn't my area of expertise, but if I don't know the answer, I probably know where to find it.  If you want to get into the wonky details yourself, my favorite health policy sites are Families USA, the Kaiser Family Foundation, and the Center on Budget and Policy Priorities.

There are only about 100 cases of swine flu confirmed in the US so far, but nearly 300 schools have shut down to prevent its spread.  Fort Worth, Texas has ONE student with the swine flu, but has shut down the entire system for 10 days.  This, in a country where nearly half of workers don't have any paid sick days, and many of those who do have paid sick time aren't allowed to use it to care for a family member.

But, not to worry, Vice President Biden "said he hoped U.S. employers 'will be generous' in
allowing parents to take time off to keep their children home if there has been
a confirmed case of flu at their school.”

“Fort Worth officials urged parents not to send their children to day care
or 'any venue where groups of children may gather' and pleaded with
the employers and the general population to make it possible for parents to
accommodate this request.

"This is indeed an example of how the community can rally to support
the health and well-being of students, their families and the District,"
schools superintendent Melody Johnson told reporters.”

I can write a report or take a conference call from home, but you can't cook and serve a restaurant meal, clean a hotel room, or care for a sick patient from home.  So what's going to happen?  Some parents will bring their kids to work.  Older kids may be left at home alone unsupervised.  Some parents will stay home, lose wages, and maybe not be able to afford to get their prescription filled this month, or will fall a little further behind on the electric bill.  But no one will point fingers at Ms. Johnson when a 12 year old left home alone sets a piece of toast on fire.

N has had a nasty cough the last few days, but no fever.  I'm 99.9 percent sure that it's allergies, but we've kept him home anyway, because there's not much downside to him missing a couple of days of preschool.  But there are real costs to closing schools, and I think it's hysterical overreaction to do so without any evidence that this is worse than an ordinary flu.

Obama signed the SCHIP reauthorization today.  About 4 million more kids will have health insurance as a result.  Yes, it matters who is in the White House.