Outlined below are CIPO’s current and ongoing advocacy efforts, both provincial and federal. Please contact CIPO if you would like further information, or if you would like to get involved in one or any of these issues.
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). CBS submitted to Health Canada in 2020 a pilot to include MSM donors in plasma collection. CIPO along with other organizations, (including the NRBDO, GBS/CIDP Foundation of Canada and others), supported this application. As representatives of a plasma-user community, we believe that given the safety measures in place, such as viral inactivation and testing, that there is no increased risk to plasma protein products with the inclusion of MSM donors.
Read our letter to the Health Minister here: Letter of Support to MSM
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 patientsis made from plasma. Canada is currently only producing enough plasma to fulfill 17% of our plasma needs. The other 83% is bought from the United States, from compensated US donors.
CIPO has been advocating that provincial governments not ban the compensation of plasma, as 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.
CIPO’s position of paid plasma: STATEMENT ON PAID PLASMA PRODUCTS
CIPO’s submission to Health Canada’s expert panel on IG: Health Canada
CIPO’s submission to Ontario’s Standing Committee on Social Policy: submission (1)
Article: Federal panel urging Canada to ramp up efforts to collect blood plasma
Article: Plasma medications from paid donors are safe: federal panel
Health Canada Report: Protecting Access to Immune Globulins for Canadians
Senate Committee Bill on Paid Plasma
SCID Newborn Screening
Newborn Screening for SCID is vital in 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 in place in Ontario, the Maritime provinces, Alberta, Manitoba and the Northwest Territories, with Quebec under consideration. CIPO has a vital role to play as the patient voice makes a difference in these applications. We are currently underway with advocacy in BC to assist in adding SCID Newborn Screening to the BC Provincial Newborn Screening Program. If you are interested in taking part in this important advocacy program, please email info@cipo.ca
Immunoglobulin Supply –
IVIG Shortages
Updated July 2021
Due to global supply issues, Canada is expecting an IVIG shortage within the next year. 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@cipo.ca if you have any concerns.
Cuvitru Shortage
In May 2019, CIPO issued a letter to our members regarding a shortage to the SCIG product, CUVITRU. As an organization we are part of a working group, the Working Advisory Group on Immune Globulin Supply, consisting of treaters of Primary Immunodeficiency and Neurology, as well as the GBS/CIDP Foundation of Canada.
This working group released recommendations to Canadian Blood Services, which were approved by the National Emergency Blood Management Committee on May 14th 2019 on how to proceed through the shortage.
Further recommendations were released on the re-introduction of patients on July 9th 2019.
CIPO and the GBS/CIDP Foundation of Canada have continued to release patient advisory letters on a monthly basis.
Treater letter for SCIg shortage
Reintroduction of CUVITRUIG Supply
Immunoglobulin Transition – Canadian Blood Services
In November 2017, Canadian Blood Services renegotiated contracts with suppliers for plasma protein therapies for the period of 2018-2021. CIPO took part as a stakeholder representative on the selection committee. The outcomes of the tender process resulted in changes in IVIG and SubQ across Canada for a large amount of patients. This transition was completed at the end of 2018.
CIPO held a series of Transion information evenings for patients, working with Canadian Blood Services, Health Care Providers and industry, we would like to thank those who participated in and attended our events.
Transition update – December 19th
Transition update – February 1st
CBS – OBM Statement December 2017
CIPO has completed its final report on the immunoglobulin transition, and you can read the report here.
Comprehensive Care
One of the core programs for CIPO, our comprehensive care work is to ensure that all primary immunodeficiency patients have access to the best care possible. Our goals are the following:
- Dedicated clinics
- Each clinic has a dedicated nurse
- Access to specialists with knowledge of primary immunodeficiency (GI, Respirology, Rheumatology, etc.)
- Access to social worker
- Transition from pediatric to adult program
- Patient registration
Our aim is to set up at least one Dedicated Centre for Primary Immunodeficiency in each province.
IPOPI-Principles-of-Care-Implementation-Package_web
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. CIPO is dedicated to advocating to ensure that this will not happen.
Awareness and Early Diagnosis
Primary Immunodeficiency is a rare disease. 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 being diagnosed each year. Through education and raising awareness of PI, we can help get more patients diagnosed, earlier.
PI and Emergency Medicine
CIPO aims at improving PI patient and caregivers experience with emergency medicine. Two initiatives are being undertaken in 2019, starting with PI patient wallet cards. The wallet cards will be followed by the development of emergency room guidelines for PI.