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.
Immunoglobulin Supply – 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.
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.
CIPO has completed its final report on the immunoglobulin transition, and you can read the report here.
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)
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, NB, PEI and NS, with Alberta and Quebec under consideration. CIPO has a vital role to play as the patient voice makes a difference in these applications.
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.
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.