Advocacy
ImmUnity Canada advocates for all Canadians with immunodeficiency disorders to have access to the resources they need to thrive.
The Key Issues Affecting the Immunity Canada Community
Advocacy is an important part of ImmUnity Canada’s mission and ongoing work. We actively consult with medical professionals, members and the community to advocate for primary immunodeficiency causes at the provincial and federal levels.
Contact us for more information on our current causes and campaigns and to learn how you can get involved and support these issues.
Newborn Screening
SCID
Newborn Screening for SCID is vital in the early detection of this rare and severe form of primary immunodeficiency. Without newborn screening, infants have a less than 40% survival rate, and with newborn screening, that number is more than 90%. Currently, newborn screening for SCID is approved in all provinces and territories except Newfoundland.
ImmUnity Canada has a vital role to play as the patient voice makes a difference in these applications. In 2020, ImmUnity Canada began working with immunologists and BC families to advocate for the inclusion of SCID testing on the existing BC newborn screening panel. Starting October 1, 2022, all babies born in British Columbia and the Yukon are now screened for SCID.
Federal Newborn Screening Program
Immunity Canada has partnered with the Network for Rare Blood Disorders (NRBDO) on a joint initiative to evaluate the possibility of a federal newborn screening program. The resulting report, “Timing is Everything: towards a federal newborn screening program,” will be available in January 2023.
Paid Plasma
Compensation for the donation of plasma and blood has been a controversial topic in Canada for the last few years. The immunoglobulin (IVIG or SubQ) that treats primary immunodeficiency patients is made from plasma. Canada is currently only producing enough plasma to fulfill 17% of our plasma needs. The other 83% is purchased from the United States and comes from compensated US donors.
ImmUnity Canada advocates that provincial governments do not ban the compensation of plasma. The plasma landscape is constantly changing in Canada, and keeping options open for patients who need this life-saving treatment is, as we see it, the only way forward.
Position, Submissions, Articles and Reports
ImmUnity Canada’s position on paid plasma products
ImmUnity Canada’s submission to Health Canada’s expert panel on immunoglobulin
ImmUnity Canada’s submission to Ontario’s Standing Committee on Social Policy (2014)
Article: Federal panel urging Canada to ramp up efforts to collect blood plasma (2018)
Article: Plasma medications from paid donors are safe: federal panel (2018)
Health Canada Report: Protecting Access to Immune Globulins for Canadians
Senate Committee Bill on Paid Plasma
In May 2018, Senator Pamela Wallin introduced the Voluntary Blood Act, banning compensation for plasma donations in Canada. ImmUnity Canada has made a formal submission to the Senate of Canada in response to the bill. Read our 2018 submission.
Comprehensive Care
Comprehensive care is one of ImmUnity Canada’s core causes and programs, working to ensure that all primary immunodeficiency patients have access to the best care possible.
Our Comprehensive Care Goals
- Dedicated clinics nationwide
- Each clinic has a dedicated nurse
- Access to specialists with knowledge of primary immunodeficiency (gastrointestinal, rheumatology, etc.)
- Access to a social worker
- A program to aid the transition from pediatric to adult care
- Patient Registration
ImmUnity Canada aims for the creation of at least one Dedicated Centre for Primary Immunodeficiency in each province.
Product and Supply Accessibility
No patient should worry about where their product or supplies are coming from. No patient should worry about being able to afford their supplies or product. No patient should worry about whether their hospital or blood bank will carry their product. ImmUnity Canada is dedicated to advocating to ensure that this will not happen.
Awareness and Early Diagnosis
Primary Immunodeficiency diseases are rare. Currently, the standard time to diagnosis in Canada is 6-12 years. An estimated 80% of patients are undiagnosed in Canada, and over 5,000 new patients are diagnosed each year. Through education and raising awareness of PI, we can help get more patients diagnosed earlier.
PI and Emergency Medicine
ImmUnity Canada aims to improve the PI patient and caregiver experience with emergency medicine. In 2020, ImmUnity Canada partnered with the National Emergency Nurses Association (NENA) on a program that provides PI patients with wallet cards, as well as the development of emergency room guidelines for PI.
MSM Donation Deferral
In 2019, Canadian Blood Services announced plans to move to a behaviour-based donation questionnaire in an effort to remove the current 3-month time deferral on men who have sex with men (known as MSM in blood collection). Canadian Blood Services submitted to Health Canada in 2020 a pilot to include MSM donors in plasma collection. ImmUnity Canada (then the Canadian Immunodeficiencies Patient Organization) supported this application, along with other organizations (including the NRBDO, GBS/CIDP Foundation of Canada and others). As representatives of a plasma-user community, we believe that there is no increased risk to plasma protein products with the inclusion of MSM donors, given the safety measures in place, such as viral inactivation and testing.
Read our letter to the Health Minister: Letter of Support to MSM (2021)
Drug and Medication Shortages
The COVID-19 pandemic and global supply chain disruptions may result in medication and drug shortages. Visit the website below to check the status of your prescribed medications.
Immunoglobulin Supply – IVIG Shortages
Due to global supply issues, Canada is experiencing intermittent IVIG shortages. Currently, patients using IVIG can expect to experience changes in vial sizes and changes in product brand. Some patients may be evaluated and asked to switch to a different method of treatment, SCIG.
Please contact your prescribing physician or email info@immunitycanada.org if you have any concerns.