Here’s a story to warm the cockles of Don Boudreaux’s heart. Probably by driving him into a screaming rage.

If you think multiple sclerosis sounds bad, try
progressive multifocal leukoencephalopathy (PML). The sad fact is that
dealing with disease often involves trying to choose the lesser of two
unpleasant and unpronouncable evils. So it is with Tysabri, the only
new MS drug in eight years. Made by Elan and Biogen, it was withdrawn
from the market in March after being linked with fatal cases of PML.
Yesterday’s data showed such cases were few and far between, but that
doesn’t mean Tysabri is ever going to make it back to the market.

It’s
not only Elan and Biogen who will be pretty annoyed about that: many of
Britain’s 85,000 MS sufferers will feel cheated too. It’s a disease
that affects young women, plenty of whom are bright and articulate –
just the sort of people who like to make up their own minds. They will
know that every medication nowadays comes loaded with health warnings
that often make the possible side effects seem worse than the disease.
The warnings are unaccompanied by any sense of proportion.

Unless
something is done about the litigious climate surrounding the
pharmaceutical industry, we might never get a chance to find out
whether the benefits of Tysabri outweigh the risk. Regulators are
scared to approve products that might have real impact on major
diseases because radical new treatments are more likely to lead to side
effects and lawsuits. As a result, drug companies will simply play safe
with variants on existing compounds.

Absolutely everything we do in this life is a trade-off, a swapping of various benefits for various risks. In medicine that goes double. Bad hip? Want it replaced? OK, x years of pain free (or less painful) life with greater mobility comes along with all the risks of having any form of surgery…MRSA, an anaesthetic, hospital food…Want to reduce your risks of a heart attack? Take aspirin daily, rot your stomach. Have MS? Condemned, by chance, to a slow rotting away of the nervous system and a gradual incapacitation over the next 10-15 years? Want to take a risk? Stop that disease at the chance of getting something worse, something that will kill you faster?

Well, who’s the person who should get to make that choice? A bureaucrat (who will by definition be suffering from agency problems) whose career will suffer if too many (or any?) die from the new treatment while nothing will happen to him for the suffering of the untreated?

Or, could it be, that the people making the choice should be those who actually have to suffer the disease and the risk? As long as it is an informed choice it seems quite obvious to me that it should be the latter.

As it happens, we already do say this for many treatments. Got bowel cancer? Want to refuse conventional treatment and have coffee enemas? Go right ahead, you may be a fool but it’s your body and your foolishness. So why not the same attitude to conventional treatments proven to be effective but risky?

It should befor the individual to decide what risks to take in this life, not the bureaucracy to decide for us. We desperately need some changes made to the system of drug licencing.