Thursday, March 23, 2006

Squeak, squeak, squeak!

While a mouse did run across my foot last week, this is not about that.

Steph has been thinking, talking and writing about disparity in site specific cancer research. As well she should, since her mom has lung cancer. For the record, 16 years ago my mom had breast cancer. Mama Kizz is, as far as we can tell, fully recovered as she remains cancer free. ChemE's mom died of Ovarian cancer almost 30 years ago.

Mrs. X and Steph have both expressed anger and frustration with the amount of money that's being funneled into breast cancer research and the disparate amount into that for lung cancer. So, I've been thinking about that a lot, wondering what steps might be taken.

I'm pretty damned happy about the breast cancer research. I mean, my mom is alive, so are numerous friends and relatives, and the diagnoses, like the hits, just keep on coming. If we didn't have the information and treatment we have I'd likely be looking at a frighteningly shortened Christmas card list.

This doesn't mean I'm happy about the lack of attention being paid to other cancers like those of the lung and of the non-breast girly bits. So I kept batting around the ideas that breast cancer research advocates used to win success and my eyes and ears were attuned. Of a sudden, a relatively unrelated note over at Verb-Ops resonated with me and I realized that Vanx is a good person to bring into this discussion. He writes stuff about pharmaceuticals. Yes, that is the technical description of his job.

I left this comment:

"Dude, you're the person I should be talking to about this, I just somehow realized this. I'm working (in my head) on a post about cancer research and funding. The enormous strides made for Breast and Colon Cancer and the big fat lot of nothing made for Lung and Ovarian cancer. So, look for that will you? I'll be interested to hear your thoughts."

Check that out, I have no idea how to indent when quoting on the blog. Phooey.

Prompt as ever, I got a return comment to a thread below from Vanx:

"You ask an interesting question about cancer research funding. I’m writing a big story [i.e. long and covering a lot of ground] that kind of gets into it. I even stood up and asked your question of a lunch speaker this afternoon, a drug discovery researcher with a small pharma company called Vertex. He told me what occurs to me right off the top of my head—well organized patient advocacy has a lot (the most) to do with it. I would hate to think of where we’d be on HIV if it weren’t for ACT UP, which is the great pioneer group in modern patient advocacy. Loud, but very smart and able to be diplomatic. The second most influential patients’ advocacy community is breast cancer. Colon is not in the same league, but you get the picture. The pharmaceutical industry is a business and a regulated one, very tuned into politics. This speaker says the industry needs to be pushed by patients—he admitted this sounded dangerously close to blaming lung cancer patients for not taking control. There is your landscape.
On the other hand, the scene is changing. I know of a lot of drugs in the pipeline targeting multi-cancer tumors. I think we’ve discussed personalized medicine before. That will help. Perception is reality, however, and the reality is that the well organized squeaky wheel gets the grease.
It’s very Machiavellian
I am talking to all the research honchos in big pharma this month month. You have given me a good question to ask. I hope to have better information very soon, and I’ll file a custom report."

Patient advocacy. Which is something ChemE and I discussed last night. And, when he brings in ACT UP he's talking about patients with a lot of money. The gay community was able to make the enormous strides they did with AIDS research because they started with male-male couples who were, obviously, making the higher dollar amounts that men do in the US at this time and because for the most part each household had 2 of those. There was money to put in the pipeline. Also they had a community and for all that is biblically horrific about the AIDS epidemic the gay, lesbian, bisexual and transgendered community found a cohesiveness against this opponent that has benefitted everyone both within and without that community.

This idea of patient advocacy and cash flow would explain the problem getting research for lung and ovarian cancer since most of those people are dead and those illnesses do not target a section of society, or a community if you will, the way that AIDS did. (Obviously I'm not a moron and I know that AIDS didn't target anyone and that it can kill anyone, but it took a bite out of a certain group that was able to stand up for their right to be helped and to be cured.) ChemE was quick to point out that by the time you have symptoms of ovarian cancer you're a short timer, very short. So she gets her CA125 test regularly but in this age of poor, non-existent and difficult to traverse health care she's one of the few. Which brings us right back to money. Money for testing, money for diagnosis, money for treatment, money for research...

Also, it's pretty easy to brand breast cancer as something you want to fund. I'll give you just a few words that will bring dollars rolling in: Mom, daughter, sister, friend, wife, lover. Go ahead, donate now.

Lung cancer patients are, by and large, assumed to have smoked and therefore to have "given themselves" or "deserve" cancer. And yeah, sure, Andy Garcia's character in Dead Again deserved it but Mrs. X not so much. She didn't smoke. So we're to believe it's her fault for growing up in an era where smoking was prevalent and second hand smoke was inescapable. I'm sure most of you know that it's the second hand crap that is linked to higher rates of cancer. If you're sucking it in yourself then you're safer. Hey, that's the angle, she should have smoked so it is her fault.

Um, no.

But how do you brand lung cancer as researchable? Given that colon cancer has a postage stamp I suppose that nothing is unmarketable but we've got very little to work with here. The American Lung Association's last high profile campaign was the Great American Smokeout. (OK, when I looked that up to link it turns out that the Great American Smokeout was sponsored by the American Cancer Society. Whoops. I have no idea what the last big thing was that the Lung Association did for you, maybe nothing.) While that's admirable as a preventative measure for all of us, it does no good to people who already have the disease.

The ovarian cancer issue is just as thorny. Breasts are out there in the world. People like to look at them, it's obvious when they're gone, they're missed even by those who don't own them. Just ask Tommy Lee about the three day bender he went on after Pamela's reduction surgery. Ovaries are far away and inside, no one wants to look at them and we spend half our lives trying to outwit them in one direction or another. They don't make a good stamp. Again, the colon isn't a fabulous stamp either but ever since Katie Couric stuck a camera up her butt on national television the colon cancer people have been, you'll pardon the expression, sitting pretty.

So, no answers yet but I have added Vanx's arsenal to the battle. What can you offer? I'm in the market for all ideas.

Put on your advocacy shoes, people, it's women's history month and so far the news has skewed to the very bad. Gird your loins for tomorrow we discuss abortion, South Dakota and an admirable woman who also happens to be the chief of a Native American tribe.


  1. Anonymous8:49 PM

    I realize funding is going to particular cancers and not others and there is a lot of hype around breast because women get out and have walks, etc., to earn $ for research.

    My mother died of breast cancer, my father of lung cancer and my husband has colon cancer, so I think I can speek from experience and from logging hundreds of hours over the last 10 years researching all three types of cancer.

    The most recent drug approved for colon cancer is Avastin. It, however, was tried on lung and breast before it was tried on colon. There were probelms with the drug on lung and breast, but it has been hugely successful for colon. They are now trying it again on lung and breast with modifications.

    Lung cancer seems to be a very hard drug to get anything to work. I also had a friend who died of non-smokers lung cancer, and they barely had time to try anything on her before she was dead. I think the drug companies try all the drugs on all the types of cancer to help save people lives, and to make more money. I for one hope they keep working.

    The drug approved for colon in 2000, camptizar, was the first new drug in 40 years, now there are 2 others, but we need more as lots of people I know are on their last drug before they run out.

  2. "While that's admirable as a preventative measure for all of us, it does no good to people who already have the disease."

    Anonomous is right. The best way to reduce lung cancer deaths is to reduce smoking and exposure to secondhand smoke and radon.

    We have been very active in all of these areas.

  3. Sometimes I forget that the internet is like gossiping in a bathroom, you never know who is listening. I'm really glad to hear who's listening to this, thanks for ringing in.

    Any suggestions on how we could mobilize to help?

  4. As I understand it, one of the interesting functions of personalized medicine is that researchers are starting to look at tumors rather than the types of cancer they are associated with. Thus they are identifying different types of, say, breast cancers in order to develop drugs (like Herceptin, which is already out there) that will help a certain known subset of patients with a particular type of breast cancer defined by the biology of the tumor and tumor growth, etc.

    So cancers will likely be grouped differently, and there is likely to be less "competition" for funding between the organ-specific categories we've used for years.

    These days, researchers need to build "biobanks"--specimen banks that are shared among research institutes. Better information technology is also needed, as is a culture change among researchers regarding the sharing of research info--including details on failures (that will be a real change in culture among scientists).

    Patient activist groups are becoming a little more focused on the ethical issues of collecting biological specimens, and some are putting pressure on big pharma, academic research, and the National Institutes of Health to establish a worldwide network of cancer research and bust up the competitive research "islands"--Mayo Clinic, Sloan Kettering, Merck, etc.

    The whole game, including funding and patient advocacy, is changing with the decoding of the genome, which at this point has produced a lot of data that needs to be processed. Big leaps don't look like much to patients yet.

    Just some thoughts.

  5. More advice from ALAMN:

    Don't be quiet about the need for more lung cancer research. Write a letter to the editor or your rep. in Congress. Tell them the CDC needs funding to fight this deadly disease.

    Brooklyn took the right step a few years ago when it joined other US cities in a smoking ban. The NYC Health Dept. estimates 100,000 New Yorkers quit smoking because of the ban. Had they not quit, at least some of the 100,000 would have developed lung cancer. Some still might -- the the percentage will be considerably less.

    Lives were saved the day Brooklyn and the other boroughs went smokefree.

    More on our natinal website (based in NYC, by the way):

  6. Anonymous8:19 AM

    Thanks, Liz. Points were well taken. The medical establishment blames people with lung cancer, so why research? I know that's wrong, there must be other causes. I thought Dana Reeve would have been the one but she's dead. So keep writing. And I'll keep trying to control the urge to strangle some people with their pink ribbons...