Article from SVB2017
By Charlène Blais
Chairperson of the Board of Directors
It’s not a secret to anyone: science evolves extremely fast. Since the discovery of the gene responsible for cystic fibrosis in 1989, we have seen prodigious medical advances and many medications have come to market to help people living with Cystic Fibrosis.
Of particular note, the arrival of drugs enabling the liquefaction of pulmonary secretions, such as Pulmozyme™. Although approved by Health Canada in the mid-Nineties, its high cost caused an uproar at the time, and the Quebec medical insurance program refused to reimburse it. An intervention of our organization, supported by partners, was needed for the government to review its decision. Due to our intervention, CF people in Quebec can now benefit from this treatment. About ten years ago, hypertonic saline was added to the range of mucolytic medications.
In the past years, we have seen the emergence of antibiotics that are more and more efficient to help us fight against infections that are still damageable. This new generation of antibiotics includes aztreonam (better known as Cayston™), which acts directly against Pseudomonas.
Advances following the discovery of the defective gene were expected until recently. Therapies directly targeting genetics are now conceivable. The pharmaceutical company Vertex has updated Kalydeco™, the first treatment correcting cystic fibrosis genetic defects in persons with a very specific mutation (about 2% of CFs in Quebec). Afterwards, Orkambi™, which targets about 50% of CFs in Quebec, was approved by Health Canada in January 2016.
Despite its approval, Orkambi™ is, unfortunately, not automatically reimbursable by our public insurance program for the many persons which could benefit from it. Indeed, the organization that recommended to RAMQ that the medication be covered, the INESSS (National Institute for Excellence in Health and Social Services), stated in October that the preliminary results are not concluding enough for the Quebec government to reimburse that treatment. However, some CFs have the chance of being covered by a private insurance that accepts reimbursement. It is nevertheless a minority of cases, the coverage conditions not being the same for all insurances.
If we compare insurance coverage or even the Quebec hospital system with that of the United States, for example, we can consider ourselves lucky. In our southern neighbour, the survival median for people living with CF is 39 years old, against 53 here: the difference is enormous. This difference is easily explained when comparing the two types of healthcare accessibility. There, the medical coverage is uneven and some persons, once at the age of majority, do not have any coverage (including for medication). Some CFs sometimes have to reduce their medication dosage to lengthen their monthly prescription, particularly for enzymes and insulin. Even graver, in many States, it is not rare that people have to stop a medication or cannot complete a hospitalization.
We therefore have the incredible chance of benefiting from an important protection system and of being born in a country that prioritizes the social and health issues in its population. Nevertheless, this chance must not stop us from denouncing some unfortunate situations that we witness: when will we see equality for all citizens to access better treatments, independently from their medical coverage, whether it be public or private? If a doctor judges that the patient could benefit from a medication that was approved, why wouldn’t it be covered by the public insurance program?
These questions of importance remain at the heart of our organization’s commitment towards you.
 According to our data, between 25 and 30% of our members have private insurance.