Stakeholders of Autoimmune Diseases on Drug Access (SADDA)

The Sjögren’s Society of Canada (SjSC) has recently formed a collaborative partnership with other patient organizations in Canada – Arthritis Society, Arthritis Consumer Experts (ACE), Canadian Spondylitis Association (CSA), Lupus Canada, Canadian Arthritis Patient Alliance (CAPA), Association of Psoriasis Patients (APP), and Canadian Skin Patient Alliance (CSPA) – to create the alliance of Stakeholders of Autoimmune Diseases on Drug Access (SADDA). The goal of this group is to consult and share patient perspectives with federal and provincial governments, public drug plans, and pharmacist associations.

The following is an excerpt from the JointHealthTM publication of the Arthritis Consumer Experts, released today, April 24, 2020, which contains updated information about hydroxychloroquine (HCQ).

“As the COVID-19 pandemic deepened, research experts and the pharmaceutical industry embarked immediately on identifying effective treatments and pursuing a vaccine in a timely and scientific manner.

At the same time, announcements by political leaders, celebrity doctors on cable news and significant coverage in both social media and on the internet spoke to the potential benefits of certain anti-malarial, antibiotic and antiviral therapies in the treatment of COVID-19 patients.

The identification of hydroxychloroquine (HCQ) as a possible treatment for COVID-19 has led to its use in clinical trials, off-label use and growth in the number of prescriptions being issued for HCQ across Canada.

While research and testing of HCQ are ongoing, we need to take stock of the impact of unrestricted prescribing and dispensing of HCQ in Canada. Due to the recent yet-to-be-proven claims of effectiveness of HCQ against COVID-19 and the growth in prescribing for it, we have seen shortages of HCQ in certain regions of Canada, particularly in Quebec. Many people living with rheumatic diseases such as systemic lupus erythematosus, rheumatoid arthritis, vasculitis, Sjögren’s Disease, and ankylosing spondylitis have reported difficulties accessing HCQ.

This presents very serious challenges for the long-term continuity of care for patients living with autoimmune disease who are reliant on this medication for disease control and to minimize flares.

This is unacceptable.

Our doctors, rheumatologists, arthritis nurse practitioners and pharmacists have an obligation and duty to educate patients that any treatment – particularly for COVID-19 – needs to be evidence-based. At this time, there is a serious lack of evidence that categorically supports the widespread use of hydroxychloroquine. Equally important are the significant potential contraindications, adverse effects, and drug interactions with the use of hydroxychloroquine for COVID-19. Health Canada and the FDA advise that HCQ not be used by patients with heart problems because it can worsen them, while studies also show that chloroquine can react badly with diabetes medicines. Some countries such as France have cautioned against its use because of heart risks.

The Canadian Rheumatology Association (CRA) has shown excellent leadership on this issue and has made a number of announcements in March and April. Although the CRA supports ongoing study for effective treatment for COVID-19, it calls for priority access to HCQ for patients with rheumatic conditions (including lupus and certain types of inflammatory arthritis) to treat these chronic diseases. The CRA is also urging policy makers, regulators, and industry to work together to increase Canada’s supply of HCQ to meet the higher demand.

The arthritis community has received assurances from Health Canada, public drug plans and the pharmaceutical manufacturers of HCQ that there is a stable supply of HCQ for patients living with rheumatic disease. In April, the Canadian government secured a deal with India for five million capsules of HCQ specifically to treat patients with auto-immune diseases and confirmed it will not be used for clinical trials or to treat COVID-19.”


We came together initially as a nameless group acting with you, the autoimmune patient, in mind. But we needed a name and hence, SADDA was formed,Stakeholders of Autoimmune Diseases on Drug Access. Not only are we all hopeful for an end to the disastrous COVID-19 pandemic but we are collectively confident that effective treatments will emerge shortly. We are also in support of those research efforts currently underway to identify evidence-based treatments for COVID-19, including providing the necessary supply of HCQ for clinical trials.

Nevertheless, it must be stressed that we and the autoimmune patient community in Canada expect that our healthcare experts are working and will continue to work in collaboration to ensure that prescribing and dispensing of medications for the treatment of this deadly virus is evidence-based and will ensure patients living with autoimmune disease who require HCQ medication continue to have access to their medication.

Thank you to all the SjSC members who participated in and returned the completed questionnaires to me on HCQ accessibility. This is an ongoing project. Also, thanks to the Arthritis Consumer Experts for their commentary in JointHealthTM.

Wishing you the best of health,

Leslie P. Laing
President, Sjögren’s Society of Canada

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