ÉDITORIAL

Putting a Price on Life

Over the last two years the pandemic and our response to it have cost eye watering amounts.  It’s estimated that in the first year alone it cost Canada more than 600 billion dollars.  We’ve made clear our willingness to pay for critical health care when the need arises and the value we put on lives.

We should take a similar approach to treatments for rare diseases.  Although individually such an illness is, by definition, uncommon, together the 7,000 known rare diseases afflict more than 500,000 people in Quebec, over 70% of whom are children.  These kids take up over 25% of paediatric hospital beds.  Although only 10% of rare diseases have known treatments, these are often extremely costly, with numerous drug regimes costing between $500,000 and $5,000,000 annually per patient.

These prices are astronomical, but drug companies justify them based on the costs of research and development as well as needing to recuperate their expenses from a tiny consumer base.  Yet they provide relatively little transparency in terms of the details of these costs.  Pharmaceutical companies also argue that more stringent price controls in Canada would limit the country’s access to the drugs.  This argument is also questionable, as many countries have negotiated cheaper prices than Canada but enjoy equal or even better supplies.  In fact, it’s been shown that net profit margins for treatments of rare diseases are on average several times higher than those of more commonly used medications.

Even if there is room for our governments to negotiate lower prices, given the tremendous amounts we’ve spent on our Covid response, how can we justify allowing even a single child to go without life-changing medication based solely on price? 

It’s true that there are doubts as to how well certain medications work, but here too more funding could make a difference.  Currently there is no national database for rare diseases, so precious information about how well less common drugs work may not be shared, leaving doctors and regulators with fewer tools to judge how well a drug truly works.  Although the federal government has proposed a national strategy on rare diseases, it’s unclear when this will be ready, or what form it will take.

Drug companies do however have certain promotions to help patients get access to extremely expensive drugs, such as a lottery system where a small number of applicants receive the drug for free.  Although this does save lives, the devastation of “losing” this lottery is unbearable.  The program is also accused of being in many ways a public relations and marketing exercise for the drug companies.

Provinces also have a compassionate care program to determine whether someone should have access to a drug which is not usually covered by the public system.  In 2018 Quebec accepted 34,000 such requests, but 18,000 were refused.  How many of those refused died earlier due to not being able to afford available care?  As well, many patients who do not receive care due to financial constraints will require hospitalization, thereby costing the public system in other ways.
Ian Barrett