I BELIEVE . . .

In case you are not a friend of mine on Facebook I wanted to share with you some special writing I did today. My niece posted the following:

 My response, which gives you some idea about my mood, was the following:

I believe in black.
I believe laughing at people is the best medicine.
I believe in telling people to kiss off a lot.
I believe in pointing out when everything is going wrong.
I believe the prettiest girls are the happiest girls and I believe that tomorrow is another day only
for Scarlett O"Hara.
I believe in martinis, not miracles

Red Herring re Drug Shortages

NBC Nightly News ran a program on October 17, 2011 about how the current drug shortage problem is being exacerbated by profiteers who are buying up available supplies of drugs in shortage and reselling to hospitals at exorbitant prices. There is no question that this price gauging is deplorable. But it is a red herring in my opinion. It shifts the focus away from the real issue which is why are there such extensive drug shortages in the first place. Why has our drug supply system fallen apart such that seriously ill patients cannot get the drugs they need to survive?

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The program started with the right message i.e. the current drug shortages are harming children with leukemia as well as other cancer patients. The program properly focused on the fact that shortages will roll back years of progress in survival rates and children's lives  (as well as others) will be lost.  But NBC Nightly News, like the Congressional response thus far, took the left turn toward focusing on those who would profit from these drug shortages by price gauging rather than keeping the focus on the pharmaceutical companies who have caused the drug shortages in the name of maximizing their  profit.

Price gouging is a much easier target for a solution than the capitalist functioning of the pharmaceutical industry.  Only a few diehard conservative economists will justify price gouging but it is a harder sell to talk about regulating an industry to require them to make less profitable drugs solely to save people's lives.  It is a particularly hard sell in Washington D.C. where the pharmaceutical industry trade association PHRMA and individual drug companies are spending record amounts in lobbying this year.

So let's not be distracted by the predators who will feed on the horrible situation of the drug shortage. Let's keep our eye on the real problem and try to make the drug companies accountable for the drug shortages that are only getting worse.

In the Pink

Two issues have been bothering me lately. One concerns the development of an "us vs them" mentality in the ovarian cancer community, a mentality that I also share even though I feel bad that I do. I have seen on ovarian cancer bulletin boards and websites a lot of posts of fury and frustration about how much airplay breast cancer gets when ovarian cancer is largely ignored. People are upset, for example, that stores had started putting up the pink breast cancer paraphernalia in September, which was Ovarian Cancer Awareness Month. Now that it is October, Breast Cancer Awareness month, you cannot go anywhere without tripping over pink stuff. It is infuriating given that ovarian cancer is a fairly deadly cancer for American women given its frequency- about 15,000 women in the U.S. will die this year of ovarian cancer out of a population of approximately of approximately 177,000 women who have been diagnosed with the disease. In contrast, breast cancer kills more American women in absolute numbers per year, about 40,000. However, there are currently 2.5 million breast cancer survivors-- about 14 times as many as ovarian cancer survivors, whereas the number of breast cancer deaths is less than 3 times the number of ovarian cancer deaths.

Cupcakes for the Cure (after you finish your KFC)

When I am not also feeling annoyed about the prevalence of pink and the absence of teal, I want to urge everyone to focus on the fact that once no one paid any attention to breast cancer either. It has taken over 25 years to build up this much awareness for the disease, largely due to the actions of the Susan G. Komen Foundation ("Komen"). Perhaps teal needs to take a page from the Komen playbook.

Which brings me to the second issue that has been bothering me. Are the methods worth the outcome of increased attention to the disease and money for research and treatment?  Natasha Singer in today's (October 16, 2011) New York Times reports that Komen has raised billions for breast cancer awareness, treatment and research.  Komen started with the Race for the Cure in 1983 but under founder Nancy Brinker's (Susan Komen's sister) salesmanship, Komen moved into commercial endorsements.  Although pink was associated with Komen from the beginning, the ubiquitous pink loop ribbon came out in 1992 as part of an Estee Lauder campaign and taken from another cancer advocate, Charlotte Haley, who first used a peach loop ribbon to solicit breast cancer donations.  And then the corporate sponsorships cascaded and grew until we find all sorts of interesting items in the pink genre-- such as KFCs Buckets for the Cure, Yoplait yogurt (with all its potentially breast cancer causing sugar), Egglands Best eggs (whose "humane" practices have been questioned), cooking appliances (I myself bought the "pink" Kitchenaid mixer because it was on sale for less than the other mixers) and even potentially carcinogenic perfumes.

It troubles me that breast cancer awareness has become big business although it is hard to argue with success.  For my teal sisters, I think we need to look carefully at the Komen model for raising money and awareness but we need to do something rather than feel sorry for ourselves that pink always seems to trump teal.

Want Not, Waste Not

Before I go in for infusions I do a pass through the house to toss out rotting food so I don't have to deal with it when I am feeling lousy from the chemo.  When I did this pass yesterday, I was feeling bad about the fact that I tend to have eyes bigger than my stomach when I shop and inevitably buy food that winds up in the trash.  For example, last weekend I bought some tofu spring rolls and heirloom tomatoes that I did not eat this week, and likely now are fodder for the trash can.  This week I mostly ate a bean tortilla casserole that I forced myself to make with black beans I cooked last week which otherwise would be destined for the trash.

It seems to me that worrying about overshopping is a luxury that those who do not have enough to eat would envy.  However, NPR has posted a story to make us who waste feel even guiltier.  Citing a research study, NPR reported we Americans waste about 55 million tons of food a year, or 40 percent of the food supply.  This represents about a 50% increase in food waste from 1974 when big Farma was beginning to overtake American agriculture to give us lower food prices.  As food prices went down, increased food waste also accounted for 25% more water consumption, 300 million more barrels of oil a year and substantial increases in methane and CO2.  Another scientist cited in the NPR story concluded that the average family  gave up 1800 pounds of emissions from food wasted at home.  Luckily for some of us who mostly eschew animal products, 35% of the wasted food is chicken, fish and fruit while only 15% is nuts and legumes.  But, not so lucky for the environment because, as I have said elsewhere, food production and processing is the main source (80%) of greenhouse emissions.

All of this data leads me to two conclusions.  First, we need to cut down on production of animal products in the first instance given how much American food production is polluting the earth.  I do my part in trying to eat virtually no animal products, although I am far from perfect in my occasionally use of dairy products and eggs.

Second, and more difficult for me, is getting a much better sense of how much food to buy and what.  I cannot afford the time or energy to go to the store every day.  So I stock up on the weekends.  Inevitably I buy too many perishable fruits and vegetables.  Worse, for 6 months I belonged to a CSA and rarely ate any of the fruits and vegetables I got in my biweekly box.  I hate to cut off a customer for the South Central LA CSA, but I am more disturbed by all the rotting vegetables I throw away. I do not see myself able to donate scraps to farms or zoos, neither of which are nearby. Instead I need to figure out some system of what and how much to buy so I can reduce my waste foot print.  But with food so colorful, available and inexpensive it is hard to say no when the stomach insists it wants that this week. Self discipline and not wanting would seem to be the best answer I have for reducing household food waste.

Shortages are Getting Worse-- the "New Normal"

In an odd way, I was pleased to see a report on NPR on October 3, 2011 that the drug shortages are worse than initially reported. I have been shouting "the sky is falling" since August, very concerned about the shortages affecting drugs like carboplatin, cisplatin and taxol, which are mainline treatments for several cancers (including taxol for  the ubiquitous Pinks who should join our bandwagon during Breast Cancer Month). The NPR report emphasized that there appears to be only a month's supply left of taxol at Mass General, a major U.S. hospital.

The NPR report also shone a light on the fact that these shortages, now up to 213 drugs, do not just affect people with relatively rare cancers or just people with cancer in general. The shortages include anesthetics, IV propofol used for intubation when someone cannot breathe,  injectable antibiotics such as streptomycin,and norepinephrine and labetalol  which regulate emergency cases of  low and high blood pressure respectively.  So these shortages may affect any of you (or me if I develop other health problems) and  most likely in an emergency setting when you rely on hospitals and medical personnel having the medications necessary to keep you alive.

And more important, as I pointed out in The Real Death Panels?, the shortages are leading to rationing--by the drug manufacturers like Ben Venue who are using an allocation system of only providing Doxil to a limited subset of those who already were in treatment with it, and by the hospitals or infusion centers who are deciding who more critically needs the drug.  (see my blog post Drug Shortages, Ethics and the Scramble to Stay Alive)  For example, as the 10/3/11 NPR report states, hospitals are taking from some patients to give to others.

One reason that Kevin Zakhar [a fifteen year old boy] hasn't been able to get the calcium solution he needs is that hospitals have been reserving it for patients who need it even more desperately than he does. 

Kathy Gura, a pharmacist at Children's Hospital in Boston, points to one of those patients, a tiny infant born only 23 weeks past conception, as premature as a baby can be and still survive. And he wouldn't have survived without the same kind of IV feeding that Kevin Zahkar gets.

Gura and caregivers at other hospitals say they have had to divert scarce electrolytes from other children and adults to save the lives of fragile preemies. Gura calls it "robbing Peter to pay Paul."

See also here for a discussion of one breast cancer fighter's experience with drug rationing.

And as shortages of one drug occur, other substitute drugs have increased demand which then can lead to their shortages.  No relief seems to be in sight.  As NPR says, drug shortages are "the new normal".  My reaction continues to be: how can that be possible in the United States which is known for innovation in science and medication development?  How can it be possible in any civilized society-- to leave your most vulnerable citizens without needed medications?

Picture This!

The other evening I got together with a dear friend of mine.  While we were eating dinner, she pulled out a small album of photographs from her trip to Machu Picchu and surroundings areas.  As I flipped through the album she gave me background information and vignettes about aspects of  the trip which the photos captured.

Old School Photo Album

The last time I showed anyone my pictures from a trip in person, I did it on an iPad.  The person looking at them went through the pictures quickly and did not pause enough for me to give too much background or too many vignettes.  But then, vacation photos have always been something that either you love or hate/tolerate.

Remember sitting through slide shows of pictures of someone's vacation while they narrated each event?  Those slide shows are fodder for many comedians' routines. Anyone who has been through such a slide show will recall the dread of going to someone's house where the slide projector and a screen were set up in the living room. The last "slide show" I saw briefly was on a DVD of old family photos from my husband's family.  My children found it fascinating.  I found something else to do.

These days I typically look at people's pictures online.  I  will peruse online photos of something within a day or so of it happening if the poster gets the photos up right away.  In that way, we are on virtual holiday with the poster.  I also see a lot more photos than if I had to meet the people in person and look at a physical photo album.  And I get to choose what I want to see rather than having it foist upon me a la old school vacation slide show.

The downside, of course, is the lack of information and context about the pictures I see online.  Some people are good about explaining the pictures.  Others do a photo dump and leave you to guess what you are looking at.  And even with the written explanations, nuance and detail just tend to not be there in postings online.

On balance, I think I prefer looking at photos online.  I can take the amount of time I want to look without boring others if I linger or offending if I go fast.  I can zoom in if I want on aspects of the photo that intrigue.  But, as I realized the other day when looking at my friend's photo album, there is clearly something lost in the online experience--the real time human sharing of experiences rather than virtual sharing.  What you get with online sharing is mostly quantity and less quality of experience.  Some would mourn the loss of the quality of the in person photo sharing experience. Perhaps I do a little.