Genetic Non-Discrimination Act (GNA)
The decision to pursue genetic testing is a highly personal one. There are many reasons why an individual may choose to, or choose not to, have genetic testing. Thanks to the new Genetic Non-Discrimination Act (GNA), Canadians are now able to make this personal decision without fear of the potential implications for insurance and employment discrimination. This removes a major barrier to the appropriate use of genetic and genomic services by the public, and is a huge step forward for patients, families and the field of genetic medicine in Canada.
On May 4, 2017 the Genetic Non-Discrimination Act (GNA), formerly known as Bill S-201, was passed into law in Canada.
The GNA protects individuals from the use of genetic test results in areas outside of medical care and medical research, such as insurance and employment. This law makes it illegal for an insurer to require a person to undergo genetic testing, or to disclose the results of previous genetic tests, as a condition of the insurer’s providing or continuing coverage.
The Canadian Association of Genetic Counsellors (CAGC) has published a fact sheet about the GNA and what it means for patients and providers.
The new legislation overrides the longstanding Industry Code on Genetic Testing Information for Insurance Underwriting. Most Canadian insurers should immediately adjust their practices in accordance with the new law, including not discussing genetic tests with clients or document results of genetic tests. Even if the client provides genetic test information unasked, the insurer should not take it into consideration since the passing of the new legislation on May 4.
To view the full text of the law passed by the government, click here.
Alpha-1 Canada is Advocating for You
You can write to your government representatives
Currently, the only augmentation therapy in Canada for Alpha-1 Antitrypsin Deficiency is PROLASTIN-C, and though many private insurers will cover augmentation therapy, only British Columbia and the province of Quebec provide public coverage. Alpha-1 Canada continues to lobby for equitable access to treatment for Alphas across Canada. Alpha-1 Canada cannot effectively campaign for coverage to benefit Canadian Alphas without your help.
You can support our efforts by contacting your government representatives:
National orphan drug
Most developed countries have laws in place which make it easier for drugs for rare diseases to be developed and approved. These laws can include special tax considerations for companies researching a new drug, extended patent protection and clinical trials which take into consideration the unique issues faced by rare disorders. Alpha-1 Canada has been a key player in the fight for an orphan drug framework in Canada participating in many of the consultations, meetings and appointments with politicians and bureaucrats.
Canada’s Rare Disease Strategy
Canada’s Rare Disease Strategy proposes a five-point action plan that will address unnecessary delays in testing, wrong diagnoses and missed opportunities to treat.
- Improving early detection and prevention,
- Providing timely, equitable and evidence-informed care,
- Enhancing community support,
- Providing sustainable access to promising therapies and
- Promoting innovative research.