Tuesday, July 10, 2012

Talking TB

Normally, my posts are all about the heart.

Today finds me blogging about the lungs again. Specifically, tuberculosis.

Unless you're living under a rock, by now you've heard about the TB outbreak in Florida that officials worked to keep under wraps, because it was only affecting, as they so quaintly put it, "the underclass." And in a case of worst timing ever, the governor has just closed the state's only tuberculosis hospital.

You know your problem has hit the big-time when the macros start showing up on Facebook, like so:

Tuberculosis kills. It's not like a cold, only worse. You have to follow a strict drug regimen for several months, sometimes a year or more, and sometimes, the drugs aren't enough.

My family has direct personal experience with this.

In the early 1950s, in her first year of nursing school, my mom had a positive TB titer. She was subsequently shipped off to the Mecklenburg County sanatorium. She also spent time at McCain, and at Black Mountain (link goes to handbook). 

In all, she was institutionalized for almost two years. Christmases, Thanksgivings, birthdays, all spent away from family and friends. Think about being 18-19 years old--even back then, even for a farm kid (they grow up fast), it was hard, never having been away from home and suddenly being cut off from your loved ones. You're on bed rest while they spend the next year or more going on with their lives, without you. A lot of the inmates had postcards like these made up:

Ultimately, she had to have a lung resection--that's where go in through your back and cut out the diseased part of your lung. In the mid 1950s, it was still a new and revolutionary treatment, and it couldn't have come a moment too soon for her.

I sent the link above for the Black Mountain sanatorium handbook to my parents and brother and sister. My mom emailed me back:

"I remember a lot of the rules, such as rest time 1 to 3pm, no reading, writing, or doing crafts, I got caught a few times... The picture made in the store had a young girl in the back of the picture that was there when I was, she was about 10 and had been there probably a year. She was everyone's pet because she was so young and had been there a while." [picture below]

She talked to Dick Gordon of The Story in 2007 and shared her experiences with him. It's a view of our past that not a lot of people remember--the days when you could be ordered into a sanatorium, and arrested if you didn't comply. 

Reading the rules for the sanatorium at Black Mountain is like taking a trip back in time. Smoking wasn't banned (surprising, for an institution specifically for people with TB), but drinking was an immediate cause for disciplinary action, and my mom knew of several people who were kicked out for drinking.

I asked her what happened to them then, because if they were under orders to be in a sanatorium for treatment, they were breaking the law by being kicked out. She told me that  some people moved from one treatment facility to another until they ran out of options. 

TB deaths in the US in the latter part of the 20th century had declined, to the point where a lot of sanatoriums were either closed or converted to other uses, but now cases are on the rise again. 

And in my opinion, pushing the problem under the rug like Florida did is not helping.
Another friend, who works in the pharma industry, says that no one is developing new antibiotics, and my mom's drug treatment--Isoniazid--is still a front line TB drug, even though it's been over 50 years now. Drug-resistant TB strains are cropping up, and no one is researching new treatments. 

It's a complex issue, and those rarely have simple solutions. We need to encourage innovation and development of new drugs, we need to not hide disease outbreaks, we need to remember the past so that we're not doomed to repeat it.

Sunday, July 8, 2012

When ads go wrong: No one deserves to die

I get what the Lung Cancer Alliance is trying to do, but when I'm innocently reading a story online about Roger Federer winning his seventh Wimbledon title, I don't expect to be hit with an ad telling me that I deserve to die.

At first, I didn't quite register what I'd read, so I had to go back to the story and look at it again. Yes, it really does say "Crazy old aunts deserve to die." WTF???

Clicking on the ad didn't provide much in the way of answers, either. I landed on this page:

which is a scrolling list of other people who also deserve to die. 

At no point is it clear that this is a statement that no one deserves lung cancer. We're supposed to infer this from the fact that it's the Lung Cancer Alliance's website, apparently. Again, I support the message that they're rather clumsily trying to get across. My mother-in-law never smoked a day in her life and she died from lung cancer; my best friend's dad was a two-pack-a-day man, and he died from lung cancer, too. Neither of them deserved it.

We in the heart disease community get this all the time. "Oh you have heart disease? Well no sympathy for YOU; you obviously brought it on yourself!" 

Which is no doubt one of the reasons why corporations fall all over themselves going pink for breast cancer awareness but wouldn't ever consider going red for heart disease awareness. Breast cancer is a tragedy; heart disease is just desserts for a decadent lifestyle, a flock of schadenfreude-laden pigeons coming home to roost.

After all, if eighty percent of heart disease is preventable, and you get it anyway, then clearly it's your own fault and you have no self-discipline or self-respect, you fat, lazy slob, you. Put down the doughnuts and go walk a mile or two, you fatty fatso.  It's so obvious, simple, and easy. You don't need help or sympathy or an awareness campaign; just eat less, exercise more--which is clearly working for a majority of us.

So yes, I'm firmly behind any campaign that attempts to erase the stigma of disease and that focuses on compassionate, supportive treatment, not finger-pointing. But what the Lung Cancer Alliance campaign is doing instead is a muddled, failed PR move that's alienating everyone--hipsters, cat people, crazy aunts, smug people, all people.

Bottom line: no one deserves to die.  

Edit: According to Lung Cancer Alliance President Laurie Fenton Ambrose, quoted in this New York Times piece, "Smoking 'is a risk factor' for lung cancer, Ms. Fenton Ambrose acknowledges, but so, too, is it a risk factor for heart attacks and strokes.
'But you’ve never heard anyone say, "You smoked, didn’t you?" to someone who’s had a heart attack or stroke.'" 
All I can say to that is, she must not know any heart attack or stroke survivors.

Wednesday, July 4, 2012

When worlds collide -- awareness

Today is July 4th, Independence Day here in the US. I told myself I wasn't going to spend the day online; my husband and I have a rare mid-week day off together, and plans to see fireworks this evening. But he's doing some volunteer work at the gallery where some of his photos are, and I'm hiding indoors from the 96-degree heat (plus humidity).

So I was looking at Facebook this afternoon when two different images came through my newsfeed and got me thinking.

In my professional life and my chosen hobbies, I'm a geek. An editor for a science fiction publisher. A gamer. A science fiction fan. A comics reader. An sf convention attendee, panelist and sometime organizer. For several years, I published a fanzine.

Geek culture: I'm soaking in it. See my post a couple of years ago about attending Dragon*Con, one of the biggest geek events on the East Cost, as a heart disease patient.

In 2009, I had something called a spontaneous coronary artery dissection, where the inner layer of the lining of my right coronary artery tore. The torn piece of arterial wall was sagging into the artery itself and blocking the flow of blood to my heart, which caused a heart attack.

Since 2009, most of my volunteer time and energy has gone toward raising awareness of heart disease, especially in women. I still attend several sf conventions every year, but especially in February--Heart Disease Awareness month--when I'm not at work, I'm usually doing something heart-related.

I've done a few things to bring heart disease awareness to geek culture. A friend of mine, Cherie Lambeth, and I have done a panel at some conventions on Being Fannish and Fit, on things like how to eat healthy on the road, how to put the game controller down and go play in the big blue room with the giant yellow light, working out while staying in a hotel, things like that. And I did a fanzine called A Change of Heart, which collected stories from my fellow fannish heart disease survivors.

Aside from those efforts, my heart disease activism and my geek life usually have very little overlap.

Today, though, they slammed together not once, but twice.

The first was this lolcat-esque macro:

When I first saw it, I had a moment of mental whiplash, thinking that heart disease awareness had somehow Vulcan mind-melded with Star Trek. In case you can't read it, the billboard says, "You deserve the redshirt treatment." In Star Trek, redshirts are expendable crewmen who get killed in large numbers, which is why it's funny that someone added Captain Kirk underneath saying "Do you want them all to die??"

Red is also the color of heart disease awareness, so when I see a health organization's billboard with red hearts on it, my first thought is that they're doing heart disease awareness, like so.

I've looked at the IH site and alas, their red shirts don't have anything to do with heart disease awareness, but it's a red heart on a health org's billboard, so my confusion is perhaps understandable.

The next example is less ambiguous:

Yes, a few months from now, some iconic Marvel characters will don pink for breast cancer awareness.

First, it should go without saying that I support everyone who's dealing with a cancer diagnosis. Cancer has taken its toll among my friends and family, and I think that breast cancer awareness in general is a good thing.

But really, when NFL players sport pink cleats, is there anyone on the planet who ISN'T aware of breast cancer?

Geeks are a very intelligent group; we don't need Thor or Captain America all pinked up to suddenly be more aware of breast cancer than we already are.

Given how dude-centric geek culture can be (examples here, here, and here), Marvel's probably going to take some grief for focusing on such a "girly" problem anyway, because clearly no women--or people who love them--ever read comics (which is a topic for another time and place).

My problem isn't with using geek cultural touchstones to get people's attention for breast cancer, though I wonder why Komen didn't try and get Lara Croft dressed in pink; I mean, everyone's looking at her boobs anyway--why not put something pink on 'em? Bonus for using Lara Croft--the other part of her anatomy that gets attention could be used to raise awareness for colon cancer...

My issue is that there's a huge disparity between what people perceive to be women's greatest health threat, versus what it actually is. Ask the average woman on the street what she thinks her biggest health threat is, and she'll most likely say "breast cancer."

And she'll be wrong. Over 435,000 women in the US die every year from heart disease. Around 40,000 die from breast cancer. Do the math; 10x as many women die from heart disease as from breast cancer.

We don't need Captain America to save the ta-tas. We need him to save our hearts.