Advocacy – Federal
A Future Free of Genetic Discrimination
On Thursday April 14, 2016 Canada took a significant step toward protecting the genetic information of Canadians.
The senate passed Bill s201 and sent it to the House of Commons where it will be debated again by Members of Parliament. The name of the bill is “An Act to prohibit and prevent genetic discrimination.”
It was introduced in the Senate by Senator James Cowan of Halifax Nova Scotia.
The Senate bill is not perfect, but it is a first step toward banning genetic discrimination and similar moves still need to be made by the provinces. Many people with Alpha-1 and other rare diseases have already expressed their support to the Prime Minister, their Members of Parliament and Provincial Legislature and Provincial Premiers. See the sample letters below.
Less than 13 years ago there were 100 genetic tests. Today there are more than 32,000. While science has led the way to better prevention and treatment of disease, lack of similar progress in protecting genetic information is a barrier to the well-being of all Canadians.
Canada is the only G7 country that does not protect genetic information, with no legislation to prevent the unwanted use of genetic information. Other countries have implemented genetic information protection measures. In Canada, science and technology have outperformed legislation, and it is time to change that.
In Canada it is legal for businesses, including the insurance industry and employers, to have access to our genetic information in addition to our family medical history. They can then use genetic information against us to deny us insurance or employment. Genetic information is complicated, personal and, frankly, not often that predictable. Genome sequencing and genetic testing may indicate the potential for a future disability but, in many cases it is not conclusive and individuals are therefore discriminated against based on the perception that they “might” develop a future disability.
In Canada we allow a young professional to be fired from a job because an employer discovers he or she tested positive for a genetic mutation – even one that will not manifest for 20 plus years. A young, healthy man with a young family can be denied life insurance because his grandmother died of any number of rare genetic diseases like Alpha-1 Antitrypsin Deficiency. Young parents are rejecting genetic tests that could determine treatment for their baby for fear of genetic discrimination toward the entire family.
You can write or e-mail the Prime Minister, your Member of Parliament and Provincial Legislature and Provincial Premier.
A sample letter to the Prime Minister and your MP can be found here.
A sample letter to your Premier and member of provincial/territorial legislature can be found here.
Find your Member of Parliament and Prime Minister here: http://www.lop.parl.gc.ca/ParlInfo/compilations/houseofcommons/memberbypostalcode.aspx?Menu=HOC
Finding Your Premier and Local Member of Provincial/Territorial Government here.
British Columbia: http://www.leg.bc.ca/mla/3-1-1.htm
Manitoba: Manitoba is in the midst of an election (April 19, 2016), so no list is available yet.
New Brunswick: http://www1.gnb.ca/legis/bios/58/index-e.asp
Newfoundland & Labrador: http://www.assembly.nl.ca/members/contact-your-member.htm
Northwest Territories: http://www.assembly.gov.nt.ca/meet-members
Nova Scotia: http://nslegislature.ca/index.php/people/member-bios
Prince Edward Island: http://www.assembly.pe.ca/index.php3?number=1024584&lang=E
Saskatchewan: http://www.legassembly.sk.ca/ (Saskatchewan had an election earlier in April but the list should be there soon)
National Orphan Drug Framework
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.
2014 Health Accord
As Canadians, we take great pride in our publicly funded health care system, its history, and the values it stands for. For the period 2004 to 2014, the federal and provincial/territorial governments in Canada entered into a formal agreement, referred to as the Health Accord. As defined in 2004, the Health Accord:
- reaffirmed the commitment of Canada’s federal, provincial and territorial leaders to the Canada Health Act;
- established strategies and goals to address wait times, home care, prescription medications, and primary care;
- defined other health care goals; and
- stipulated an increase of 6% in health care funding each year.
It will soon be time for that accord to be renegotiated and the Canadian Medical Association has invited Alpha-1 Canada to help draft their recommendations to the federal, provincial and territorial leaders.
Alpha-1 Canada is proud to have been invited to participate and it puts us in a much stronger position to affect change for Alphas.