21 January 2014

Doc prescribes weight loss drug without patient's knowledge or consent

Last week I was shocked to find out that my friend T had been prescribed Orlistat without her knowledge or consent.

Orlistat, also known as Xenical and, in another formulation as over-the-counter Alli, is a drug that produces a small amount of weight loss. It also has notorious side-effects, with users reporting explosive diarrhoea and flatulence, fecal incontinence and the curiously euphemistic 'anal leakage'. It may be implicated in breast and bowel cancer. It has been subject to criticism by health advocates in relation to its licensing.

T recently suffered a period of ill-health and had been in hospital. When she was released, she found that one of the drugs in her pack of medications was Orlistat. Nobody had discussed this with her and she had not consented to the prescription. She agreed to talk about what happened:
Could you introduce yourself please?

My name is T, I'm a black queer fat femme feminist, who also happens to be type 2 diabetic.

What happened?

I was in hospital for a few days due to an infection exacerbating my blood sugar levels and ketones, making me quite sick. Because of my high blood sugar levels, they were reviewing my diabetic medication, taken my current set of meds away and discussing possible changes of my medication with me. They asked me lots of questions about my meds, how I used them etc, and at meal times or certain points of the day they would present me pills to take. I was on a drip and several medications, and it was explained to me what they were and what for.

At least one day into my stay I was presented with a new bright blue pill and I asked what it was. They said it was Orlistat and I had to take it with meals and that was it. They didn't explain what it was for or how it could help me. The name rang a small bell in my head but I didn't say anything. And with the way they had been communicating before, I trusted them to have my well being in mind.

When being discharged they presented me with all my medications, going through how to take each one and how they would help. When it came to the Orlistat, the nurse was like: "I'm not sure who prescribed you that, or really what it is." I said that I had an idea and it was okay. When I got home I had a chance to look at it properly and confirmed my suspicions that it was a fat loss drug, and remembered that it was known for causing sudden and oily and violent diarrhoea if you had a high fat diet.

How do you feel about having been prescribed Orlistat without your knowledge or consent?

I didn't think of it as a violation at the time I had realised, just a weary 'of course they would prescribe me this, I'm fat;' just one of those things. I kept taking it for another day because... I don't know. The next day I started reviewing it in a fat feminist lens, and saw that I had no idea who prescribed it, and wasn't briefed on it despite its adverse side effects, it was prescribed without my permission or input, and only given to me due to my weight, even though I already take a far gentler and appropriate medication that helps with my appetite and diabetes which they knew about (and was negotiated with me). It's a violation, it's disrespectful to me as a human being to not even give me the decency of trying to justify fat loss medication to me. Not even to know which doctor thought they should chuck this obesity pill at me without talking to me. It's depressing to think those nights where I was experiencing abdominal pains, terrified about my blood sugar levels and if this was the start of multiple hospital visits, they had my fat ass primarily on their mind.

I've stopped taking it now. I'm glad I allowed myself enough self respect for that.

I wonder if you have any comments about how race, class, sexuality or other intersections might have fed into you being prescribed Orlistat without your knowledge or consent. My feeling is that the secret prescription reveals a lot about how people of colour and other minorities are treated in health care institutions, for example.

Hmm, I know there's a lot of talk and exposition when I see doctors about how black people's diets are particularly bad and cause diabetes, but I don't know if I see an intersection. My diabetes is something I've felt very helpless about a lot of the time and I feel like a lot of the time I'm fighting to survive and face off the medical institution, let alone have the ability to see the intersections I experience in this environment.

The main thing mentioned in relation to my blackness in terms of health is how I might be some kind of type 1/type 2 hybrid. But this hasn't been explained much and feels like another thing to confuse me. So I'm putting it out of my mind for now.

What else would you like to say?

I would like to say thank you for taking me seriously. These things happen and you're on your own and then you mention it on twitter and the reactions of your friends inform your reaction and the seriousness of what they have done. I acknowledge how useless/helpless I feel about diabetes, and your asking about the intersections has made me want to take action and read up on this, if there is anything out there.

Fat people are all too familiar with clinical tactics that compromise our well-being, be it bullying, unnecessary gatekeeping, iatrogenesis*, or a host of other negative interactions. But this story is scandalous, even within an already dismal context. Nobody should be secretly prescribed drugs, especially not ones that have such horrible side-effects. Patient knowledge and consent is a foundation of ethical medical practice. Indeed, this case is reminiscent of other human rights abuses around the administration of drugs, for example the contraceptive Depo Provera amongst developing world women.

I am grateful that T had the strength to be public about what happened to her, it's easy to see how others might be silenced by shame. It would be useful to find out if other fat people have been secretly prescribed weight loss medication without their knowledge or consent. If this has happened to you, please comment here or contact me in confidence.

*Iatrogenisis = where the treatment causes harm, where the patient is better off without the treatment.

06 January 2014

No More Stitch-Ups! Developing Media Literacy Through Fat Activist Community Research

This is an unusual post, here's why:
  • It's a research paper I have produced independently. No one's paid me for this, it's not part of a university programme or job, I've done it because I thought it would be a valuable community resource.
  • It's research by and about fat people. This pretty much never happens.
  • It's a research paper that's underpinned by Research Justice values, which are about recognising and drawing on community expertise, and creating research that benefits those communities directly. This pretty much never happens either.
  • It's by and about fat activists and makes use of our international networks. This really never happens.
  • It's not primarily about health! This is extremely rare when you're talking about fat.
  • It's written in language that, hopefully, people will understand. I've avoided jargon where possible.
  • It's free and available to anyone who wants to read it, unlike a lot of research that is only available for a payment. It's released under a Creative Commons licence which means that it's ok to share it non-commercially (you can re-publish it if you want to) as long as you don't alter it and you credit me.
  • It's about fat people who have agency, and how they might help change the practises of some of the world's most powerful institutions.
  • It's about you and me. I hope you will recognise yourselves in this work.
Please read the post and/or pass on the download to people. I would really love this work to make a difference.

Key words: fat, fat activism, media, agency, Research Justice, community, Fat Studies, news, journalism, ethics, power, social change.

The full paper is in this post, you can read it by clicking the 'Read more' link below. You can also download it:

No More Stitch-Ups! Developing Media Literacy Through Fat Activist Community Research by Dr Charlotte Cooper (.pdf, 270kb).