- How is my product made?
- Plasma Protein Therapies (Ig is one of many) is made from approximately 10,000 donors per batch. The first step is when a donor enters a plasma donation clinic and donates their plasma. A sample is then tested for a variety of pathogens. If it is the first time donating, the plasma is kept in the freezer of the donation centre until the donor returns for a second donation. Once the second donation is received and tested, the donations can be released and sent for fractionation.
The plasma is placed in a centrifuge and at different steps in the process, different plasma protein therapies are made. Products for Hemophelia, burn victims, as well as IG are all made during the fractionation process.
- Is my product made in Canada?
- Most likely no. Canada only produces about 17% of its current plasma needs. Canadian Blood Services currently imports 27 of the 30 plasma protein products used in Canada. Plasma donated in Canada is only used in 1 Ig product. The majority of Canada’s (and the world’s) Ig comes from plasma that was collected from compensated US donors.
- How do I know that my product is safe?
- The Krever Commission was established and the report issued in 1997 to ensure that the tainted blood scandal of the 1980’s never be repeated. Your safety is of great concern and a top priority, which is why we maintain a close relationship with Canadian Blood Services and our industry partners, who manufacture our Ig therapies. Because of advancements in technologies and safety standards, there has not been a transmission of HIV or Hepatitis C through tainted blood in over 30 years.
- I’ve had a reaction to my product, what do I do?
- Regardless of which method of delivery you are on, both IVIg and SubQ can have small reactions (headache, redness or swelling at the injection site) which can be common. Mark any reactions down and inform your nurse or treating physician as soon as possible. Adverse reactions (difficulty breathing, extreme dizziness, chest pressure, etc.) are rare and should be reported immediately and seek medical attention.
- How do I tell people about my PI?
- Living with a PI can be extremely difficult, especially when trying to figure out how best to explain to those around you. The best you can do is be honest and try to educate your family, friends and coworkers to your illness. If you are uncomfortable disclosing it with your whole office, we advise to at least discuss it with the designated Health & Safety representative. We find it helpful to explain that extending the sanitation protocols that are enacted during flu season (hand washing practices, etc.) to throughout the year, enable you to be in a safer and healthier environment. Talking about it also raises awareness and decreases stigmatization.
- How do I explain to my child’s school about their PI?
- Whether or not to inform your child’s school about their PI is a parent’s decision. However, we advise that you do inform the school for any of the following: your child will be or has been absent frequently due to their PI, your child is needs to be administered medication at the school, your child requires modifications that are not available to other students.
Remember that it is important to work with the school in order to ensure that your child has the best possible opportunity to learn and participate. *
For more information on PI in schools, the Immune Deficiency Foundation has produced a comprehensive guide called School Guide for Students with Primary Immunodeficiency Diseases.
- I think I might have a PI, what do I do?
- If you suspect that you or someone you know may have a primary immunodeficiency, visit a physician with your suspicions and discuss. We’ve added some helpful sheets to download and bring with you. (link JMF testing, 10 warning signs)
- There is no Immunologist in my area, help!
- If you, or someone you love, have been diagnosed with PI but there is no Immunologist in your area. Many times PI patients are treated by specialists in other areas: Hematology, Respirology, Infectious Diseases. This is because PI crosses over into many different areas, and does not require treatment from an Immunologist. However, if you or your loved one have a very rare condition you may be referred to a specialist in your disease.
- I’m the only person I know with a PI, where can I reach out for support?
- PI is a rare disease, and sometimes it can be isolating. CIPO offers many support services for the thousands of Canadians whose lives are affected by PI. Whether it is joining a local CIPO Support Group, reaching out to a CIPO Peer Support Worker, or attending a CIPO Patient Education Event – our range of services are tailored to support everyone.