Our Call to Action
World PI Week 2017: Ensuring Access to Life-Saving Immunoglobulin Therapies for People with Primary Immunodeficiency
In 2017, we, the PI Community, raise our voices to call for assured access to life-saving immunoglobulin therapies for people with PI. We call on policymakers, health authorities, payers and healthcare professionals to put in place the relevant mechanisms to ensure that all people with PI throughout the world have access to safe, efficient and appropriate treatment options which will reduce mortality and morbidity and allow a better quality of life.
Together, the PI Community urges policy-makers, health authorities and healthcare funders to address the barriers that prevent access to the best suited immunoglobulin replacement therapy for each individual with PI, and especially by:
1. Putting in place adequate funding systems to ensure the availability of Ig therapies, including:
- appropriate supply of immunoglobulins on the national healthcare systems and proper reimbursement of the therapies to ensure equal access for all individuals
- introduction of alternative funding schemes to guaranty the availability of several Ig therapies
2. Ensuring optimal dosing of Ig therapy replacement to enhance patients’ quality of life, avoid further organ damage and save related costs to the healthcare systems:
Treatment strategies shall be individualised and a personalised regimen (dosage and treatment route) must be developed for each patient and modified as necessary to achieve treatment goals and meet the needs of each person, taking into consideration possible disease-associated complications.
3. Giving primary consideration to the supply of immunoglobulin therapies for people with PI:
As Immunoglobulin therapy remain the main and only treatment option for most people with PI, national clinical guidelines for immunoglobulin use shall recommend administration to people with PI and prioritize indications giving primary consideration to PI.
4. Incentivise initiatives including awareness-raising campaigns addressed to the general public for voluntary plasma and/or blood donations, considering that Ig supply is dependent upon plasma availability.
Read the full 2017 Call to Action below.
In 2016, we raised our voices to call on policymakers, health authorities and healthcare funders to put in place the relevant mechanisms to ensure that all PI patients have access to safe, efficient and appropriate treatments and optimum care throughout the world. More specifically, we called on Governments, health authorities and payers to :
1. Make immunoglobulin replacement therapies available to all PI patients
2. Provide access to Hematopoietic Stem Cell Transplantation (HSCT) or gene therapy to Severe Combined Immune Deficiency (SCID) and other severe primary immunodeficiency patients
3. Ensure access to early diagnosis and quality specialist care
4. Ensure increased availability of immunoglobulin replacement therapies, HSCT and additional antimicrobial measures in developing countries
Read the full 2016 Call to Action below.