At a time when Quebec’s health system is undergoing a major reorganization, it is important to remember that patients constitute the real reason for this upheaval, while our public decision-makers affirm that they want to refocus service delivery on these people.
It is in this context that we wish to draw attention to a category of particularly vulnerable patients who have real expectations regarding improved access to innovative treatments. These are people with a degenerative neurological disease. These diseases are serious and incurable, and medical advances can, at best, only alleviate the symptoms they cause.
Neuro partners, our group, which represents 200,000 people suffering from a degenerative neurological disease and their loved ones, is sounding the alarm about the urgency of accelerating timely access to innovative treatments.
As this is a complex issue, we took the initiative of writing a memorandum which summarizes the challenges and issues, and which presents recommendations and possible solutions, the Manifesto for access to innovative treatments. We are taking advantage of this month of February to officially unveil this document, which is mainly aimed at our public decision-makers.
In this publication, we argue that it is essential to optimize access to innovative treatments if our province wishes to have a health care system that aims first and foremost to help people live better. Thus, the Neuro Partners manifesto includes several concrete solutions to optimize access to innovative treatments as well as to consolidate and improve research.
Our main recommendation is to provide Quebec with a clear situation report and a concerted provincial strategy regarding degenerative neurological diseases. This strategy must necessarily include a dimension of consolidation and improvement of research. To achieve this, we propose the establishment of an advisory committee which would provide representation of the players in the vast ecosystem of degenerative neurological diseases and which would aim to advise the government of Quebec.
Furthermore, to accelerate access to exceptional medications, we recommend that the Régie de l’assurance santé du Québec (RAMQ) provide access to pre-authorizations for recognized degenerative neurological diseases and that it identify certified prescribers. according to their specialties. Then, for faster access to innovative treatments approved by Health Canada, we propose that the Government of Quebec establish interim agreements on the price of these innovative treatments during the price negotiation period with the Canadian Pharmaceutical Alliance.
We also see the need to systematically inform patients of the existence of support programs offered by biopharmaceuticals and specialty pharmacies. Also, due to the importance of tertiary prevention for people suffering from a degenerative neurological disease, access to first-line physiotherapy services in the treatment continuum and access to necessary equipment are essential.
To promote broader access to the diagnostic process of generative neurological diseases, we suggest further training, throughout Quebec, of general practitioners and staff of front-line health establishments on the subject of these diseases.
Furthermore, we maintain that it will be impossible to accelerate access to innovative treatments without optimizing research funding in a sustainable and long-term manner and without simplifying the process of obtaining funding for researchers.
Indeed, research funding is the crux of the matter for the continuity of promising projects thanks to which we will achieve results applicable in clinical practice. It is therefore important to support the transition from fundamental research to clinical innovation for degenerative neurological diseases through a provincial innovation strategy.
Finally, we reiterate that we are ready to work with our public decision-makers to improve the lives of people affected by degenerative neurological disease. We offer them our full cooperation in implementing these recommendations.
* Co-signed this text: Marie-Hélène Bolduc, Vice-President, Programs and Services, Muscular Dystrophy Canada; Caroline Champeau, general director, Parkinson Quebec; DD Francesca Cicchetti, full professor at Laval University and researcher at the CHU de Québec, Neuroscience Axis, and member of the Canadian Academy of Health Sciences; Claudine Cook, general director, Amyotrophic Lateral Sclerosis Society of Quebec; Dr Nicolas Dupré, neurologist, full professor, CHU de Québec–Laval University; Francine Lacroix, general director, Huntington Society of Quebec; Dr Serge Rivest, neuroscientist and director of the research center at the CHU de Québec–Université Laval.