Cost of drugs related to rare diseases | It is together that we will have to find solutions

In response to Stéphanie Grammond’s editorial “Pharmacy: fees of $100,000… for a single patient1 », published on 1er april.


1er last April, Stéphanie Grammond wrote an editorial denouncing the fees charged by certain pharmacists by presenting two non-standard examples of more than 300 million prescriptions served in pharmacies in Quebec. The issue, in our view, lies elsewhere and relates more to the cost of ultra-expensive drugs, used to treat rare diseases: an important social issue that deserves to generate discussions between all parties concerned.

Indeed, these so-called specialty drugs will be more and more numerous on the market and we must, collectively, find solutions to manage their costs.

First of all, it should be noted that the pharmacist does not take any profit on the cost price of the drug. In the context of complex therapies, some pharmacist-owners can invest more than 1 million dollars to purchase a hyper-specialized drug from a pharmaceutical company before even having generated any income whatsoever. They then charge professional fees based on the level of involvement and services provided to the patient struggling with a rare disease.

colossal work

Ensuring the follow-up of these therapies sometimes requires colossal work on the part of the pharmacist, both because of the complexity of the follow-up and the time spent with the patient. For example, monitoring the efficacy and safety of therapy often requires numerous meetings with the patient and with the treating team, not to mention the prescription and analysis of laboratory tests, essential to treatments, which often continues for months.

It is work that is invisible to the public, and probably to private insurers, but which is essential for the success of a therapy. It is hard to imagine such work being paid according to what the Régie de l’assurance maladie du Québec (RAMQ) agrees to the pharmacist, i.e. $9, not to mention that these fees must cover the pharmacy’s operating costs, including those related staff, rent, computer systems, electricity, business insurance, drug deliveries, supplies, etc.

In addition, the pharmacist assumes all of the financial risk in the purchase of these drugs and, moreover, he is the only one to do so. The big pharmaceutical companies and insurers assume virtually no financial risk in the chain of care.

The manipulation of these drugs as well as the adjustments or abandonment of therapies often cause major financial losses, all absorbed by the pharmacies, jeopardizing the survival of these local community businesses. Take the example of Soliris, the annual cost of which for the drug alone is close to $700,000 per patient.

It should also be considered that the dirigisme issue that currently prevails in the dispensing of specialty drugs means that this type of drug is found in a very small number of so-called specialty pharmacies and remains beyond the reach of traditional pharmacies, to the detriment of patients. With restricted access to the market, community pharmacists have a limited ability to take on the financial risk associated with these expensive drugs on their own.

Review the mode of operation

For several years, the Quebec Association of Proprietary Pharmacists (AQPP) has been asking the government to oversee the management of specialty drugs. With the increase in the number of treatments for rare diseases and the arrival on the market of very expensive drugs, it is perhaps time to review the mode of operation and the sharing of the financial risks of this type of therapy, but also all the market dynamics surrounding the distribution, dispensing and reimbursement of these drugs.

In this regard, insurers themselves have a long way to go. As mentioned by M.me Grammond in his text, they have not been very active in reducing the costs associated with expensive therapies, since the higher the costs associated with these therapies, the greater the insurer’s profits.

Reviewing the operating mode surrounding specialty drugs is therefore, in our opinion, the only way forward to make the system fair and equitable for patients and for community pharmacists. The AQPP invites all stakeholders in this file to work together to find a lasting solution to the challenge presented by the growing arrival of these expensive therapies for the treatment of rare diseases.


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