The Primary Immunodeficiencies (PI) Call to Action offers guidance for governments on the steps they can take to understand, appropriately diagnose and manage Primary Immunodeficiency Diseases in their respective countries. See below for the full Call to Action.
Our full call to action
The PI Community calls upon countries across the world to take heed of these devastating and under-diagnosed diseases by developing national strategies that address PI. We encourage governments to consider the following components when developing future disease strategies and rare disease plans:
Raising Awareness on Primary Immunodeficiencies
- Encourage and support governments to implement targeted campaigns to increase recognition of PI amongst the medical profession, parents, schools, day care centre employees, researchers and nurses, with the objective to increase understanding of the disease, knowledge of the ‘10 Warning Signs’ and available testing methods and treatments.
Education of Health Professionals and Expertise Exchange
- Work together with medical specialists organisations (e.g. ESID, ASID, LASID, CIS, EFIS, INGID, UMES, etc) and academia to encourage and support individual countries to: provide standards for basic and applied immunology training, with emphasis on PI, in the education programmes for general practitioners and nurses; integrate basic and applied immunology teaching, particularly alongside immunisation, into specialised programmes for training fellows in general paediatric internal medicine, rheumatology, respiratory medicine, and infectious diseases; develop cross country initiatives to allow the exchange of expert experience and education, including capacity to network and funding of visits of immunology centres representatives in other countries.
Early Diagnosis and Screening
- Support the development of clinical protocols to reliably identify all forms of PI;Support the development of simple diagnostic tests for PI and promote such tests for use widely
- Support the development a neonatal screening test for severe combined immunodeficiency
- Promote the creation of International guidance for the recognition of symptomatic patients and ensure appropriate immunologic and genetic laboratory tests are available at national level via centres of excellence;
- Promote the creation and support of patient registries that can provide support for patients and also scientific insights into the make-up of PID.
- Promote transnational research into the feasibility of screening programmes to ensure early detection.
- Promote funding research into better understanding of PI to improve diagnosis and the management of the conditions and general understanding of the immune system
Gathering Knowledge and Data
- Provide funding to conduct epidemiological studies to assess the prevalence and incidence of PI
- Encourage the creation of and input into international registries which will enable future diagnostic processes
- Create national PI patient registry;
- Encourage transnational, research and remove the administrative obstacles to multinational clinical trials
- Establish Centres of Reference to promote best practice in terms of disease classification, treatment outcome measures, assessment of cost of treatments for an integrated approach to PI recognition and treatment.
Comprehensive and Adequate Treatment
- Ensure access to treatment for people with PI as it has been shown to prevent and improve chronic disease, improve social well-being and reduce the burden of the disease;
- Ensure that safe immunoglobulin treatments are available to all patients who require antibody replacement; and ensure the adequate and high quality supply of human plasma;
- Recognise the social needs of PI patients and their families and facilitate access to adequate support services;
- Ensure the reimbursement of orphan drugs according to their medical efficacy for the patient and not according to the price of the product.
Call to action
On April 28th 2010, in celebration of World Day of Immunology (WDI), JMF, IPOPI, INGID and ESID joined forces to reignite the PI campaigning in Europe by launching a European reference paper on PID and a United Call to Action, which offers guidance for governments on the steps they can take to understand, appropriately diagnose and manage Primary Immunodeficiency Diseases in their respective countries. The Call to Action focuses on five elements: raising awareness of PI; educating health professionals and fostering exchanges in expertise; early diagnosis and screening; and encouraging countries to ensure comprehensive and adequate treatment. The initiative has been a huge success with 126 signatures to date and now serves as the basis for future joint work.