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What’s New

Anifrolumab (Saphnelo) 

March 6, 2024 – Lupus Canada is pleased to share that Saphnelo has been listed in Nova Scotia effective March 1, 2024.

The public notice and listing criteria will appear on the Nova Scotia Pharmacare Programs website when the March Bulletin is posted.

The Canadian Immunocompromised Advocacy Network (CIAN) – Advocating For Immunocompromised People Across Canada

February 15, 2024 – Lupus Canada is honoured to be a member of the CIAN group. Together our goal is to protect more Canadians to improve the quality of life and significantly reduce hospitalization for vulnerable people.

On page 60 of the Heal Canada Digital Magazine, February 2024 edition, you will find an article about CIAN in the “Advocacy Spotlight” section.

Kim Dumais Lupus Journey

February 3, 2024 – Kim Dumais – a mother of four, a dedicated professional, and a lupus warrior – exceeds expectations and inspires those around her with her resilience, determination, and unwavering spirit. Don’t miss out on this inspirational journey of strength and courage.

To read the article, please visit: A career, four boys, and lupus  – By Isabelle Légaré, Le Nouvelliste

3 février 2024 – Kim Dumais – une mère de quatre enfants, une professionnelle dévouée et une guerrière du lupus – dépasse les attentes et inspire ceux qui l’entourent par sa résilience, sa détermination et son esprit inébranlable. Ne manquez pas ce parcours inspirant de force et de courage.

Pour lire l’article, veuillez visiter: Une carrière, quatre garçons et un lupusPar Isabelle Légaré, Le Nouvelliste

Benlysta 

February 1, 2024 – Benlysta, a prescription drug used to treat adults with lupus as well as adults with lupus-related kidney inflammation (active lupus nephritis), has been included in the latest update of RAMQ’s list of medications published on February 1, 2024. RAMQ’s List of Medications is a regulatory list of the medications covered by Québec’s basic prescription drug insurance plan. Details can be found here: List of medications | Régie de l’assurance maladie du Québec (RAMQ) (gouv.qc.ca)

French: https://www.ramq.gouv.qc.ca/sites/default/files/documents/non_indexes/liste_med_2024-02-01_fr.pdf

English: https://www.ramq.gouv.qc.ca/sites/default/files/documents/non_indexes/liste_med_2024-02-01_en.pdf

Anifrolumab (Saphnelo) 

January 25, 2024 – Lupus Canada is pleased to share that Saphnelo is listed on the Newfoundland and Labrador Prescription Drug Program effective January 24, 2024.

For more details regarding this listing and the renewal criteria, please visit the Newfoundland and Labrador Prescription Drug Program: CLICK here.

Anifrolumab (Saphnelo) 

January 22, 2024 – Lupus Canada is pleased to share that effective today (January 22nd), the New Brunswick Drug Plans Formulary has listed Saphnelo for the treatment of adult patients with moderate to severe SLE. For more details regarding this listing and the renewal criteria, please visit the NB Drug Plans Formulary: CLICK here.

Saphnelo was also listed by the Veterans Health Care Benefits program as of December 15, 2023. You can find it by searching ‘Saphnelo’ in the VAC Program drug formulary: CLICK here.

NOTICE OF THE ANNUAL GENERAL MEETING OF LUPUS CANADA

January 11, 2024  – NOTICE IS HEREBY GIVEN, that Lupus Canada will host its 2024 Annual General Meeting on Tuesday February 13th, 2024 at 6:30pm EST via Zoom.

Lupus Canada is inviting you to a scheduled Zoom meeting.

Topic: Lupus Canada AGM
Time: Feb 13, 2024 06:30 PM Eastern Time (US and Canada)

Join Zoom Meeting
https://us06web.zoom.us/j/87552572281

Meeting ID: 875 5257 2281

Find your local number: https://us06web.zoom.us/u/kbnxuanBTx

The agenda for this meeting will include the following:

  • Approval of the 2023 Annual General Meeting Minutes
  • Appointment of the Auditors for the 2024-2025 fiscal year
  • Approval of the Financial Statements
  • Election of the Directors to the Board

For further information, please contact Leanne Mielczarek, Executive Director, at 1-800-661-1468 or leanne.mielczarek@lupuscanada.org

Anifrolumab (Saphnelo) 

November 30, 2023 – Lupus Canada is pleased to share that Anifrolumab (Saphnelo) will be included on the Alberta Drug Benefit List effective December 1st, 2023. For details regarding this listing and renewal criteria, please visit the Alberta Drug Benefit List website.

RAMQ has also included Anifrolumab in their drug formulary update that took effect on November 8th, 2023. For more information please visit www.ramq.gouv.qc.ca/fr/a-propos/liste-medicaments.

Lupus Canada Recipient of Community Services Recovery Fund

November 1, 2023 – We are pleased to announce that Lupus Canada has been selected as a funding recipient of the Government of Canada’s Community Services Recovery Fund which supports Community Service Organizations as they adapt for the long-term impacts of the COVID-19 pandemic. The Community Services Recovery Fund is a one-time $400 million investment from the Government of Canada to support community service organizations, including charities, non-profits and Indigenous governing bodies, as they adapt and modernize their organizations so they can continue serving their communities.

Lupus Canada’s awarded funding will directly support the Transition to Remote Operations – A Recovery, Efficiency and Modernization Plan”. This funding is a game-changer and will enable Lupus Canada to make significant strides in our mission to improve the lives of those impacted by lupus.

As a direct result of this funding, Lupus Canada will update technological supports, streamline and optimize remote operations, as well as spearhead innovative solutions to enhance our services and outreach. Ultimately, this means we will be able to connect with our lupus community more efficiently and effectively with improved systems in place.

Nearly 5,500 Community Service Organizations from coast to coast have received funding to build their organizational capacity and adapt for the COVID-19 pandemic recovery. The Community Services Recovery Fund is being delivered through three National Funders – Canadian Red Cross, Community Foundations of Canada, and United Way Centraide Canada.

Lupus Canada would like to thank the Government of Canada, as well as the Canadian Red Cross, for their support as well as the community that continues to support our mission. It wouldn’t be possible without you and your unwavering commitment has made this possible. Thank you.

@redcrosscanada

Doctor’s Orders: Lupus puts people at higher risk of organ damage, depression and cognitive impairment

Despite the challenges of treating lupus, Dr. Zahi Touma is hopeful for the futures of people living with the complex autoimmune condition.
https://www.healthing.ca/diseases-and-conditions/lupus/autoimmune-uhn

Lupus Awareness Month Media Feature

By raising our voices together, we hope to create a better world for those living with lupus. With the help of folks like Ms. Roberts and the article featured on healthing.ca we are able to put a spotlight on this debilitating disease.

During Lupus Awareness Month, Lupus Canada is working tirelessly to raise awareness of lupus, advocate for those impacted by this debilitating disease, support researchers in their quest to find a cure, and to help those with lupus live well and have equitable access to a diversity of treatments until one day a cure is found.

We are excited to share that the following article has also been published on the following sites: National Post, Edmonton Journal, Ottawa Citizen, Regina Leader-Post, London Free Press, Calgary Herald, Winnipeg Sun, Vancouver Sun, The Star Phoenix, Montreal Gazette, Calgary Sun, Edmonton Sun and Canoe, creating the much needed awareness for lupus.

https://www.healthing.ca/diseases-and-conditions/lupus/lupus-canada-world-lupus-day?utm_source=Twitter&utm_medium=postmedia_organic&utm_campaign=healthing_promo#Echobox=1682986504-12

Investments to Support Access to Drugs for Rare Diseases

On March 22, 2023 the Government announced a total investment of up to $1.5 billion over three years in support of the first-ever National Strategy for Drugs for Rare Diseases to help increase access to, and affordability of, promising and effective drugs for rare diseases to improve the health of patients across Canada. For more information, please visit https://www.canada.ca/en/health-canada/news/2023/03/investments-to-support-access-to-drugs-for-rare-diseases.html

50th Anniversary of the Lupus Program at Toronto Western Hospital and celebration of the contributions of Dr. Murray Urowitz to the field of lupus

What an enjoyable evening celebrating the 50th Anniversary of the Lupus Program at Toronto Western Hospital and the contributions of Dr. Murray Urowitz, one of the world’s leading clinician-researchers in the field of lupus.  Thank you Dr. Urowitz for all your contributions over the last 50+ years, it exemplifies your dedication and commitment to patient care.

 

 

Government of Canada improves sickness benefits under the Employment Insurance system

On November 25, 2022, the Government of Canada announced the permanent extension of EI sickness benefits from 15 weeks to 26 weeks beginning on December 18, 2022. The change to EI sickness benefits will provide Canadians with additional time and flexibility to recover so they can return to work after an illness, injury or quarantine. Individuals who qualify and establish a new claim on or after December 18, 2022, will be able to receive up to 26 weeks of EI sickness benefits if they are sick and require this time to recover.

With your help, Lupus Canada advocated for these changes and we commend the Government of Canada on implementing this extension. Together we can make a difference!

For more information please visit https://www.canada.ca/en/employment-social-development/news/2022/11/government-of-canada-improves-sickness-benefits-under-the-employment-insurance-system1.html

BENLYSTA now approved in Canada in addition to standard therapy for treatment of active lupus nephritis in adult patients

July 30, 2021 – BENLYSTA (belimumab) has been approved in Canada for the treatment of active lupus nephritis (LN) in adult patients.[i] BENLYSTA is available as an intravenous infusion  and a subcutaneous injection.

BENLYSTA has been available in Canada as an intravenous infusion since 2011 to reduce disease activity in adult patients with active, autoantibody-positive, systemic lupus erythematosus (SLE). It was the first SLE-specific treatment approved in over 50 years. Since then, BENLYSTA has also been approved for subcutaneous injection. The recent approval extends the indication in Canada to include both LN and SLE.

BENLYSTA, a human monoclonal antibody, is the first and only biologic approved in Canada for systemic lupus erythematosus and lupus nephritis. This approval follows recent approvals in the US and EU for a similar expanded LN indication.

“Approximately 40% of patients with systemic lupus erythematosus develop active lupus nephritis, which causes inflammation in the kidneys and can lead to end-stage kidney disease. BENLYSTA is the first medicine approved to reduce SLE activity and treat adults with active lupus nephritis. This approval symbolizes new hope to many of the thousands of Canadians living with lupus, a complex and incurable autoimmune disease,” said Marni Freeman, Interim Country Medical Director at GSK Canada. “We’re proud to bring forward this important treatment advance, not only for Canadian lupus patients seeking options but also for the healthcare professionals who treat them.”

“This represents a critical step forward for lupus patients in Canada, many Canadian patients with systemic lupus erythematosus and active lupus nephritis should enjoy healthier and more active lifestyles with this new treatment alternative,” said Leanne Mielczarek, Executive Director, Lupus Canada.

To read the full Press Release please visit https://www.newswire.ca/news-releases/benlysta-now-approved-in-canada-in-addition-to-standard-therapy-for-treatment-of-active-lupus-nephritis-in-adult-patients-815017415.html

Newest lupus drug in 60 years discovered in Canada, approved in USA

https://www.newswire.ca/news-releases/newest-lupus-drug-in-60-years-discovered-in-canada-approved-in-usa-800798864.html

Lupus Canada is pleased to learn of the recent FDA approval of Lupkynis. While it is very exciting that new medications are being approved in the United States, with over 1 in 1000 Canadians living with lupus there is not enough treatment options within Canada. Being the only national organization dedicated to lupus research, advocacy, public awareness and patient support, we work to ensure all Canadian lupus patients have easy and equitable access to lupus specific medications.  Lupus Canada strongly urges the Government of Canada to approve more options for lupus drugs like Lupkynis to better support Canadians living with lupus. A made in Canada treatment to lupus, must be available to Canadians living with lupus.

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