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ALS Action Canada group ropes in political leaders

Published in Burns Lake Lakes District News February 24, 2021, written by Priyanka Ketkar

Hopes to get more support and ultimately better treatment options for Canadians

The ALS Action Canada group and the individuals who are part of the group, have been fighting to get Canada to join the global movement to end ALS. In this fight, some of the local politicians have been helping spread the word.

The founding member for ALS Action Canada, Deane Gorsline, who is a former Burns Lake resident, has been advocating on behalf of everyone diagnosed with ALS in Canada, for better treatment, access to clinical trials, improved timeline on drug approvals. He is now hoping to connect MP Francis Drouin with U.S.A. Congressman Mike Quigley who has played a major role in new legislation to address the fight against ALS in the U.S.A.

Members of the ALS Action Canada group have also connected with Friends of Cancer from the U.S.A. to discuss multinational oncology approvals. In 2019, the U.S. Food and Drug Administration (FDA) announced their collaboration with Health Canada and the Australian Therapeutic Goods Administration for Project Orbis under which new drugs’ review and application would get a simultaneous decision in all three countries. The ALS Action Canada group is now hoping to replicate this process for the approval of ALS drugs.

On Feb. 16, the group met with Shirley Bond, the interim leader of the B.C. liberal party and the Kelowna-Mission MLA Renee Merrifield to discuss the need for an upgraded ALS clinic, the need for quicker drug approval process and the ideas of a BC ALS caucus.

“I have been involved with many ALS events during my time as an MLA and have learned a lot about the impact of the disease on individuals and their families as well as about the work that needs to be done in British Columbia,” said Bond, in an email to Black Press Media.

In 2018, Bond was awarded the exceptional advocacy award by the ALS Society of BC for her community and provincial work on behalf of ALS patients and their families.

Bond and Merrifield met with Greg Gowe, who is one of the executives for the ALS Action Canada group as well as someone who has been diagnosed with the disease.

Gowe has been fighting to bring better treatment options to B.C. as well as Canada and has voiced his opinion on the lack of options for those diagnosed with ALS in Canada.

Patrick Caden, a former military member, who was diagnosed with ALS in October 2020, has also been fighting to get improved treatment options without having to fly out of the province. His family and friends are currently trying to raise funds in order for him to get a stem-cell treatment from Germany. Caden’s family has also written to Bond seeking her support.

“It’s important we do all we can to continue to raise awareness. I want to assure you that I will continue my ongoing advocacy as a Member of the Legislative Assembly of British Columbia,” she said in her email.

The Nechako Lakes MLA John Rustad, who hasn’t been engaged on the issue so far, has also said he will raise the issue with the ministry and see if something can be done.

“A process is coming up this Spring in the legislature called the estimates, we get to review the spending decisions by the various ministries and so what I will do is see if the critic will find some time to ask the minister about ALS services in B.C. and where there is an opportunity to expand those services,” he said.

Currently, there is an online engagement opportunity, open until March 26, to help the government device a national strategy for high-cost drugs for rare diseases. Canadians can read the discussion paper shared by Health Canada, complete an online questionnaire or send in an email or even participate in virtual public town halls, to put forth their thoughts around bringing better care for those suffering from rare diseases like ALS.

“Improving ALS support in our province is not a partisan issue, I am sure that all of us can agree that it is important and that there is more to be done,” said Bond.

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