Equality for all!

It's no secret that science is evolving extremely rapidly. Since the discovery of the gene responsible for cystic fibrosis in 1989, we have seen tremendous medical advances and several drugs have been put on the market to help people living with cystic fibrosis.

Of particular note is the appearance of drugs that help liquefy pulmonary secretions, such as Pulmozyme™. Although approved by Health Canada in the mid-1990s, its high cost created an uproar at the time, and Quebec's drug insurance plan refused to reimburse it. It took the intervention of our organization, with the help of partners, for the government to finally review its decision. Thanks to our intervention, CF people in Quebec can now benefit from this treatment. About ten years ago, hypertonic saline was added to this range of mucolytic drugs. In recent years, we have seen the emergence of antibiotics that are more and more effective in helping us fight infections that are still harmful to us. This new generation of antibiotics includes aztreonam (better known as Cayston™), which acts directly against Pseudomonas.

The consequences of the discovery of the defective gene were long overdue until very recently. Therapies directly aimed at genetics are now possible. The pharmaceutical company Vertex first discovered Kalydeco™, the first treatment that corrects the genetic defect of cystic fibrosis in people with a very specific mutation (approximately 2% of CF in Quebec). Subsequently, Orkambi™, which targets nearly 50% of Quebec CF, was approved by Health Canada in January 2016.

Despite this approval, Orkambi™ is unfortunately not automatically reimbursed by our public insurance plan to the many people who could benefit from it. In fact, the organization that recommends to the RAMQ the drugs that will be covered, the National Institute of Excellence in Health and Social Services (INESSS), ruled last October that the preliminary results were not conclusive enough for the Quebec government to reimburse this treatment. However, some FKs are fortunate to be covered by private insurance that accepts reimbursement. However, this is a minority of cases, as the coverage conditions are not the same for all insurances.

If we compare insurance coverage or even the hospital system in Quebec with that in the United States, for example, we can consider ourselves lucky. Among our neighbors to the south, the median survival of people living with CF is 39 years, compared to 53 years here: the difference is huge. This discrepancy is easily explained when comparing the two types of accessibility to care. There, medical coverage is unequal and some people, once they have reached the age of majority, have no coverage (including medication). Some CF sometimes have to reduce their medication doses in order to be able to extend their monthly prescription, especially in the case of enzymes and insulin. Worse, in many states, it is not uncommon for people to have to stop taking medication or cannot complete a hospitalization.

We are therefore incredibly fortunate to benefit from an important protection system, to have been born in a country that places social aspects and the health of its population at the heart of its priorities. But this chance should not prevent us from decry some of the unfortunate situations we encounter: when will there be equality for all citizens in terms of access to the best treatments, regardless of their medical coverage, whether private or public? If a doctor believes that his patient could benefit from an approved medication, why would it not be covered by public insurance?

These important questions remain at the heart of our organization's commitment to you.

Charlène Blais
Chair of the Board of Directors

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