Oct. 04, 2013
Posted at October 4, 2013 3:58 pm by J Russell Teagarden

2 Responses to Philosophical Borders: The Utilitarian Challenge to Rare Diseases

  1. Oli Rayner says:

    I agree that action is what makes the difference but action is more likely to work if it is based on sound moral arguments. I think utilitarianism vs equality is a false dichotomy. The reality is more dynamic because there is utility in fairness i.e. society as a whole benefits when people know they are operating in a system that treats people fairly and attaches weight to minority interests. In addition, treatments for rare diseases often produce more utility for each patient than treatments for common conditions. You cannot just count the number of people who benefit from a given treatment, you have to weigh the amount of benefit rendered to each person. So 5 people with cystic fibrosis given Kalydeco will yield much more utility than 10 people given a slightly improved aspirin.

  2. Larry says:

    It is good to see that some are examining the “why” in support for rare diseases as well as the how, etc. Why people take the actions they do has been studied since the dawn of man and will continue to be studied given the complexities of the human brain and of societies. There are many philosophies that can explain some aspects of our approach to rare diseases and those who suffer from them. Utilitarianism is one that certainly works.

    My wife was diagnosed 6 months ago with Multiple System Atrophy – Type C. We have been learning how to deal with that news on the fly for these past months with only the web, a very small network of doctors and a few friends. What I have learned points to a second philosophical explanation that might move our understanding along.

    Constructivism seems to me to provide a better explanatory framework for how people react to rare diseases and their impact on individuals or a community. For example, within three weeks of being diagnosed my wife wanted her hair done so asked a friend for a recommendation. The hairdresser she was sent to ended up being a fundraiser for various causes. After just one hair appointment and the conversation that ensued the hairdresser, her staff and some of her Tuesday customers basically “adopted” my wife. That shop has become a “purple stop” with displays of MSA Coalition materials, a self-generated short bio of the patient and two different objects (a bracelet and a key chain) available for anyone who would like to buy one or donate money.

    Those who are in the shop know MSA is a very rare disease and they may never meet another one with it. They also have “constructed” a perspective that any and all who suffer need some support no matter popularity of the disease. If people learn from their prior experiences and from their thinking about those experiences to take these types of actions then what might be necessary are the very actions and opportunities NORD and rare disease organizations can carry out. Inform, provide access to and actions with rare disease communities and advocate for them can provide the “experiential” learning necessary to construct a bridge across utilitarianism. Join in those types of activities and we may be able to build a better understanding of rare diseases and how to deal with those who have them.

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