Patient organization, or industry astroturf?

New Scientist has investigated drug industry funding for patient groups. These organizations are, at least in theory, founded and led by people who have a specific disease or condition, with the goal of providing information and support for their members and others with the same disease.

Unsurprisingly, pharmaceutical companies gave more money to patient groups devoted to diseases where there's an available medication, and less to those where the treatment is surgical, or where there is little or no effective treatment (including amyotrophic lateral sclerosis). Also, groups devoted to conditions where drug companies have been accused of "disease-mongering," convincing healthy people that they need medication, got a large percentage of their funds from companies selling that medication.

The groups that got a lot of industry funding denied that it biased their activities. NS's data suggest that, even if there's no explicit quid pro quo, the money is making a difference: the study compared two women's health organizations, one of which takes industry funding and one which makes a point of not doing so, and their statements about hormone replacement therapy.

Critics claim, however, that dependence on industry funding can unintentionally compromise an organisation's objectivity. "I think it's naive to think that you aren't being influenced," says Douglas Ball of Kuwait University, who has studied patient groups in many countries, including the US. Lexchin agrees: "Psychologists talk about the 'gift relationship'. The patient organisations are getting something and feel the need to repay that gift. Whether they are conscious of it or not is really irrelevant."

Sharon Batt of Dalhousie University in Halifax, Canada, has just begun to study patient group behaviour and funding after years working in breast cancer advocacy, where she noticed a general pattern. Organisations that accept pharmaceutical funding "tend to advocate for faster review and availability of drugs, greater insurance coverage, and they tend to see 'direct-to-consumer' advertising as a benefit to patients", she claims. Groups that maintain financial independence, on the other hand, "emphasise safety over speed and are critical of direct-to-consumer advertising", she says.

These groups don't seem to be the worst kind of astroturf: they aren't entirely industry-funded, and most of them, as far as I can tell, are in fact run by the patients involved. The warning here is largely for patients looking for unbiased information: just because a group says it's run by and for patients doesn't mean it isn't taking its information from the same drug industry reps who are buying your doctor lunch.

Patient organization, or industry astroturf?

New Scientist has investigated drug industry funding for patient groups. These organizations are, at least in theory, founded and led by people who have a specific disease or condition, with the goal of providing information and support for their members and others with the same disease.

Unsurprisingly, pharmaceutical companies gave more money to patient groups devoted to diseases where there's an available medication, and less to those where the treatment is surgical, or where there is little or no effective treatment (including amyotrophic lateral sclerosis). Also, groups devoted to conditions where drug companies have been accused of "disease-mongering," convincing healthy people that they need medication, got a large percentage of their funds from companies selling that medication.

The groups that got a lot of industry funding denied that it biased their activities. NS's data suggest that, even if there's no explicit quid pro quo, the money is making a difference: the study compared two women's health organizations, one of which takes industry funding and one which makes a point of not doing so, and their statements about hormone replacement therapy.

Critics claim, however, that dependence on industry funding can unintentionally compromise an organisation's objectivity. "I think it's naive to think that you aren't being influenced," says Douglas Ball of Kuwait University, who has studied patient groups in many countries, including the US. Lexchin agrees: "Psychologists talk about the 'gift relationship'. The patient organisations are getting something and feel the need to repay that gift. Whether they are conscious of it or not is really irrelevant."

Sharon Batt of Dalhousie University in Halifax, Canada, has just begun to study patient group behaviour and funding after years working in breast cancer advocacy, where she noticed a general pattern. Organisations that accept pharmaceutical funding "tend to advocate for faster review and availability of drugs, greater insurance coverage, and they tend to see 'direct-to-consumer' advertising as a benefit to patients", she claims. Groups that maintain financial independence, on the other hand, "emphasise safety over speed and are critical of direct-to-consumer advertising", she says.

These groups don't seem to be the worst kind of astroturf: they aren't entirely industry-funded, and most of them, as far as I can tell, are in fact run by the patients involved. The warning here is largely for patients looking for unbiased information: just because a group says it's run by and for patients doesn't mean it isn't taking its information from the same drug industry reps who are buying your doctor lunch.

Memorial for Mike

Most of my friends already know this, but elisem has asked that we (re)post the link. The John M. Ford memorial is in Minneapolis this afternoon.

I'm in New York, but I'll be thinking of Mike, of Elise, and of the other friends who are gathering to remember him and take care of each other.

Memorial for Mike

Most of my friends already know this, but elisem has asked that we (re)post the link. The John M. Ford memorial is in Minneapolis this afternoon.

I'm in New York, but I'll be thinking of Mike, of Elise, and of the other friends who are gathering to remember him and take care of each other.

Blueberry sorbet, in progress

I'd been going to make ice cream, but the current cold/sore throat thing doesn't seem to like large quantities of milk (at least not as hot chocolate with extra cream), so sorbet.

Ingredients:

1 12-ounce (weight) package frozen blueberries (approx 2.5 cups, per the nutrition information)
Scant half cup sugar [vanilla sugar, because that's what I have]
Scant half cup water
1/2 teaspoon Grand Marnier liqueur

Combine berries, sugar, and water in a saucepan. Bring to a boil. Simmer 30 minutes. Let stand another 30, to cool for easier handling. Blend, strain into a bowl, mix in liqueur, chill (I've set the timer for another hour), freeze in the ice cream maker.

Notes: This was based on poking around online. The simplest recipe I found wanted a quart of berries, and 3/4 cup each of sugar and water. Okay, 5/8 of 3/4 is 15/32, which is a scant half cup for the home cook. This recipe didn't mention alcohol, but most of the sorbet recipes I've seen do, to keep it from freezing too hard. They often suggest vodka, I think on the theory of "neutral spirit," but we don't have that. The orange liqueur has been around for years, literally—I bought it for chocolate mousse, and haven't made that in a while—and seemed a better choice than white wine, sherry, or bourbon. Hmm. One that I looked at earlier (probably where I got the idea of Grand Marnier) calls for this many blueberries and a full tablespoon of vodka; maybe I'll add another half teaspoon of liqueur. (That one also wants a cup of sugar to half a cup of water, and some lemon juice, but the orange is going to take care of citrusness, I think.)

In the course of this, I not only dug out a dusty bottle of liqueur, but a hand-held blender I got as an odd sort of prize from the temp agency I was working through during the Commute From Hell, an apron I almost never use (I thought the blueberry stuff might splatter when blended), and my spurtle, which I found earlier today in the course of putting away my grandmother's shell-inlaid trivet. We have better trivets, for practical use; this is a memory of my grandparents' home. I put it in the baking-stuff drawer.

Blueberry sorbet, in progress

I'd been going to make ice cream, but the current cold/sore throat thing doesn't seem to like large quantities of milk (at least not as hot chocolate with extra cream), so sorbet.

Ingredients:

1 12-ounce (weight) package frozen blueberries (approx 2.5 cups, per the nutrition information)
Scant half cup sugar [vanilla sugar, because that's what I have]
Scant half cup water
1/2 teaspoon Grand Marnier liqueur

Combine berries, sugar, and water in a saucepan. Bring to a boil. Simmer 30 minutes. Let stand another 30, to cool for easier handling. Blend, strain into a bowl, mix in liqueur, chill (I've set the timer for another hour), freeze in the ice cream maker.

Notes: This was based on poking around online. The simplest recipe I found wanted a quart of berries, and 3/4 cup each of sugar and water. Okay, 5/8 of 3/4 is 15/32, which is a scant half cup for the home cook. This recipe didn't mention alcohol, but most of the sorbet recipes I've seen do, to keep it from freezing too hard. They often suggest vodka, I think on the theory of "neutral spirit," but we don't have that. The orange liqueur has been around for years, literally—I bought it for chocolate mousse, and haven't made that in a while—and seemed a better choice than white wine, sherry, or bourbon. Hmm. One that I looked at earlier (probably where I got the idea of Grand Marnier) calls for this many blueberries and a full tablespoon of vodka; maybe I'll add another half teaspoon of liqueur. (That one also wants a cup of sugar to half a cup of water, and some lemon juice, but the orange is going to take care of citrusness, I think.)

In the course of this, I not only dug out a dusty bottle of liqueur, but a hand-held blender I got as an odd sort of prize from the temp agency I was working through during the Commute From Hell, an apron I almost never use (I thought the blueberry stuff might splatter when blended), and my spurtle, which I found earlier today in the course of putting away my grandmother's shell-inlaid trivet. We have better trivets, for practical use; this is a memory of my grandparents' home. I put it in the baking-stuff drawer.

Blueberry sorbet report

The blueberry sorbet I posted about earlier is very blueberry, but the texture isn't up to what I can buy in the supermarket.

Also, my kitchen sink is now somewhat blue. My spurtle may be permanently blue. I hope the shirt I was wearing when doing the washing-up isn't stained, but it may be.

Next time, I'm going to try adrian_turtle's suggestion of using corn syrup instead of sugar and water, to improve the texture. Next time will probably not be blueberry. I can buy a perfectly good raspberry sorbet, for about what I'd pay for the necessary package of frozen raspberries, so that hardly seems worth the trouble.

Blueberry sorbet report

The blueberry sorbet I posted about earlier is very blueberry, but the texture isn't up to what I can buy in the supermarket.

Also, my kitchen sink is now somewhat blue. My spurtle may be permanently blue. I hope the shirt I was wearing when doing the washing-up isn't stained, but it may be.

Next time, I'm going to try adrian_turtle's suggestion of using corn syrup instead of sugar and water, to improve the texture. Next time will probably not be blueberry. I can buy a perfectly good raspberry sorbet, for about what I'd pay for the necessary package of frozen raspberries, so that hardly seems worth the trouble.