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.
The Canadian Association of Retired Persons (CARP) launched a survey around Canadians and immune-compromised Canadians’ attitudes towards COVID-19. The questions included in the survey were informed by a diverse group of immune-compromised Canadians including organizations that support immune-compromised communities. The survey can be found here: https://www.surveymonkey.com/r/SCJSBSW, and I hope that you can take a moment to share your experiences in efforts to inspire action to better support the health and wellbeing of immune-compromised Canadians.
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
SAPHNELO has received a positive recommendation to reimburse from CADTH (Canadian Agency for Drugs and Technologies in Health) and INESS (Institut national d’excellence en santé et en services sociaux) for adult patients, in addition to standard therapy, for treatment of active SLE. Pending negotiation with government funding groups and the individual provinces, we hope that Saphnelo will be accessible to patients through public coverage by 2024.
SAPHNELO contains anifrolumab, a monoclonal antibody (a type of specialized protein) that blocks the action of a group of proteins called Type I Interferons (IFN). Type I Interferons are found at high levels in people with lupus and blocking them can reduce the inflammation in your body that causes the signs and symptoms of lupus.
SAPHNELO may help to reduce your lupus disease activity and the number of lupus flares you are experiencing. If you are taking medicines called ‘oral corticosteroids’, using SAPHNELO may also allow your healthcare professional to reduce your daily dose of the oral corticosteroids that are needed to help control your lupus.
BENLYSTA has received a positive recommendation to reimburse from CADTH (Canadian Agency for Drugs and Technologies in Health) for adult patients, in addition to standard therapy, for treatment of active lupus nephritis (LN). Pending negotiation with government funding groups and the individual provinces, Benlysta should be accessible to patients through public coverage by 2024.
BENLYSTA, a BLyS-specific inhibitor, is a human monoclonal antibody that binds to soluble BLyS. By binding BLyS, BENLYSTA inhibits the survival of B cells, including autoreactive B cells, and reduces the differentiation of B cells into immunoglobulin-producing plasma cells.
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. BENLYSTA was approved for subcutaneous injection in 2018. Following Health Canada approval for lupus nephritis in 2021, it became the only treatment indicated for both SLE and LN in intravenous and subcutaneous formulations.
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
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
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.
Lupus Canada Informational Survey
Lupus Canada shared a survey with our lupus community to gather information about lupus patients experiences with symptoms of lupus. This information is not for research but will be used to support and inform applications to Health Canada by pharmaceutical companies as part the regulatory requirements to bring drugs to market. The survey results are summarized without identifiers. This data will be shared with pharmaceutical companies to support applications for drug approval to Health Canada. The survey results may help regulators and health technology assessment bodies to understand what the benefit of new treatments is and who would benefit most from them, thereby improving their ability to make new treatments available for people with lupus. Please click on the link below to view the survey results.
Ontario’s leading arthritis centre – “The Arthritis Program” (TAP) at Southlake Regional Health Centre in Newmarket, Ontario – will be closing on January, 2021, leaving TAP patients stranded and lost in the middle of a pandemic. To learn more please watch the video below.