Advocacy

Issues Affecting the PI Community

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 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.

Statement on RFP Announcement

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.

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 

In May 2018, Senator Pamela Wallin introduced the Voluntary Blood Act, banning compensation for plasma donations in Canada. CIPO has made a formal submission to the Senate of Canada in response to the bill. Read our submission.  Read our submission.
 

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.

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.