You may not know, but:
Thus, the real issue resumes to discuss the justice of this or that established limit.
It is an awful truth, especially when you live with a rare disease and need the State (or your health plan) to supply you with expensive medication.
So, as a society, what we have left is to discuss:
The difficulty here lies in the moral pluralism of society. People carry different values in themselves; in theory, nothing guarantees that they will agree with you.
And if we talk about morals, naturally, we need to discuss ethics.
But what is ethics?
So any ethical theory needs to tell us the morally right thing to do and then provide a rationale for that choice.
We, humans, have at our disposal three main ethical theories:
- Consequentialist ethics
- Non-consequentialist (or deontological) ethics
- Virtue ethics (where the four principles of Bioethics come from: autonomy, beneficence, non-maleficence and justice).
And here, now, we will focus on consequentialist ethics because it is used a lot by Health Technology Assessment Agencies, such as Conitec and the National Institute for Health and Care Excellence (NICE). If you are one of those people who depend on expensive drugs for their treatment, then you will like this post. Stay with us!
What consequentialist ethics proposes is that:
What is morally good or bad depends on the consequences the action generates.
You may have heard the expression, “The end justifies the means.” Will it be? That is precisely the essence of consequentialist ethics.
Thus, moral theories of this kind need to justify what qualities it has or what makes the consequences of an action right or wrong.
The most famous consequentialist moral theory is utilitarianism. And here, things start to get interesting because utilitarianism underlies cost-benefit analysis, which is widely used in economics (and in cost-effectiveness or cost-utility analyses, used by Conitec and similar ones).
What does utilitarianism propose?
Basically, two things:
- What is desirable is happiness and the absence of pain.
- The right thing to do is the one that generates the most happiness and the most minor pain (for the entire community).
In a very light approach, by utilitarian logic, the bloody spectacles in the Roman Coliseum, where a handful of Christians were devoured by lions, to the joy of a noisy crowd in the audience, would be something recommendable because, in theory, we would be providing the greatest possible good for the more significant number of people.
And now I’m in a position to ask you a question:
For a utilitarian guy, what is better? Treat 300 women annually in a public health program to combat postpartum depression or provide an expensive drug to someone?
You have just understood (and perhaps in your own skin) what utilitarianism is and realized it presents a problem.
It is an unfair way of dealing with issues involving minorities, such as people with rare diseases. Anything to do with individual rights (and, by extension, human rights) ill fits the form of utilitarianism. Everything is expendable if the aim is to provide the best for the most significant number of people.
Cost-benefit analyses (or cost-effectiveness or cost-utility, used by Conitec and the like) tend to harm people living with rare diseases (and other minorities) if we don’t bring other criteria into the decision-making process (equity, unmet medical needs, and severity of illness, for example, among others).
The above video has an exciting moment (which I recommend you watch the whole thing). It happens at 15’51”. That’s when Anna, from the audience, tells Michael Sandell that utilitarianism tends to harm minorities (people living with rare diseases, from a sociological point of view, can be considered a minority). Anna doesn’t know, but she draws our attention in its few minutes of fame. That’s what you need to take with you from our conversation today.
Bottom line: When dealing with minorities, it is necessary to maintain a balance between economic efficiency and equity. That’s if justice is something people should still be concerned about.
We will return to this subject.
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