Cure vs Support
There’s a fair bit of talk in patients rights and disability rights activist circles on the nature of charities and foundations that heavily and nearly almost solely promote and fund research towards a cure, versus funding support for people living with illness and disability right now. Duncan Cross has a post titled Don’t Walk, about how he has
some problems with the research/fund-raising agenda most disease organizations pursue.
It’s a thought-provoking read. Where do kidney organisations come in? The PKD Foundation’s stated aim is a cure for PKD. They have a Walk for PKD. They spend most of their money on funding research towards a cure and medical treatments, and a portion on what’s labelled ‘Patient Awareness and Education’. I’m not in much of a position to offer any critical commentary on what the PKD Foundation does as they are a very USA-centric organisation and while there’s an Australian chapter of the Foundation, there’s no online presence so I can’t tell what they do. (I’ll be emailing the convenor soon.) They have local chapters, volunteer-run, throughout the USA and a few other countries, which seem to be patient support groups. I don’t know what they get up to. I’ll find out!
This is not to say that looking for a cure or treatment for any medical condition is a bad thing. It’s not. (I know I’d certainly love a cure for PKD.) It simply becomes problematic when it becomes the locus of funding, research and awareness to the detriment of the patients waiting for a treatment or cure. People need support and advocacy for what’s going on right now, that is, a better quality of life, as well as hope for the future. Awareness campaigns for the general public do tend to focus on how terrible it is to have Disease X and you should Donate Now! so we can cure it. There’s not a lot going on about how you can support people with Disease X in a practical way, right now. Like you know your neighbour has breast cancer or PKD or MS, and donating to related charities can give you a warm fuzzy feeling, but doing something in addition like offering to watch their kids once a fortnight so they can have some time off is going to impact their life much more meaningfully and immediately. This also allows people in different situations to contribute to the cause: someone who’s time-poor may be able to donate some money, someone who’s cash-poor can assist in other ways.
Bill Peckham’s blog, Dialysis From the Sharp End of the Needle, is all about advocacy for dialysis patients. Kidney organisations receive criticism for their emphasis on transplantation as a ‘cure’. The general public tends to believe that once a person with kidney failure receives a transplant, that’s the end of their problems. People with kidney disease either already know better or are sorely disappointed to find out that a transplant may not be quite what they expected. Thus people like Bill Peckham spend a good deal of time and energy on promoting the needs of those on dialysis including personal support networks, and pushing for better funding and recogntion of dialysis techniques and technology.
This patient-to-patient support is becoming increasingly important in the treatment of acute and chronic disease and disability. I’ve already posted about the very interesting white paper on e-patients – and more and more doctors are (finally) realising that the internet is not a hotbed of village idiots eager to self-diagnose and treat themselves with quackery, but an excellent way for people to make contact, discuss the information, studies and research, even produce their own research, discuss what the best treatments are and where to get them, and generally collaborate with others in directing their own health care. This kind of health care hasn’t resulted in scores of deaths through misinformation, as feared. It’s certainly been of help in cases of rare diseases and also ones with a publicity problem. It’s the long tail of health care in action.
Patients along the right-side of the long tail with a niche disease use the extraordinary reach of the web to discover they are not atypical after all. It’s no surprise that patients congregrate around wikis, chat rooms, blogs and social networks to help each other, provide empathy and inspiration. (UBC Health Library Wiki)
I wonder how many of the disease organisations are listening to the conversation that’s happening.