In 2022, World PI Week focuses on the importance of access to healthcare.
LIVES CAN BE SAVED.
Access to healthcare is a basic human right. People living with primary immunodeficiency worldwide depend on it. Each of them is entitled to the correct diagnosis, quality treatment and care.
World PI Week 2022 embraces the following themes:
- Early diagnosis is the first step in improving quality of life for patients and is critical to ensure patients have the best outcomes for treatment and care.
- Newborn screening for severe types of PID such as SCID or XLA is a life-saving and efficient method to achieve early diagnosis and should be implemented in all countries.
- Awareness and education about the symptoms and characteristics of all forms of PID help to improve early diagnosis rates.
Treatment and quality care
- Everyone living with a PID is entitled to receive quality treatment and care, no matter where they live. Universal access to treatment and specialist care for PID patients shall be ensured worldwide.
- Immunoglobulin replacement therapy remains one of the most important treatments for a wide range of PIDs, access should be guaranteed for all patients in need, alongside other types of treatments.
- Prophylaxis treatments are effective for several types of PIDs and can be beneficial to patients of all ages. They can be used to complement other treatments or compensate for measures that aim to provide antibody protection, when these are not effective.
- When Hematopoietic Stem Cell Transplantation (HSCT or BMT) is the best suitable treatment, patients should be guaranteed access without delay.
- Medical innovations such as gene therapy hold promise for a potential cure for some PIDs. Measures should be taken to ensure their uptake by health systems and patients’ safe access.
- Vaccination can protect PID patients from specific viruses and diseases as well as assist in the diagnosis of PID. Vaccines should be made available to patients where indicated and systematically to those around them.
- Efforts to improve secondary prevention measures should be enhanced, including diagnosis of potential co-morbidities in PID patients.
- Increased access to preventative medicine shall be ensured, to help reduce infections as well as complications in PID patients, and promote health.
- Health promotion measures including healthy diets, regular physical activity as well as mental health support play an important role in enhancing the quality of life of people living with PIDs.
- Multidisciplinary and integrated care, including psychological support, is fundamental to improve PID patients’ health outcomes.
- Research and data collection are essential to innovate, progress clinical practices and improve outcomes for patients, including in the fields of genetics, advanced treatments, underlying causes of complications etc. Funding for research in new treatments including for gene therapies should be increased, as these treatments are key in curing PID.
- COVID-19 studies have generated new findings and contributed to improving knowledge of the immune system. These advances shall be used to strengthen care for PID patients and further the understanding of PID etiology.
- Studies into the impact of COVID-19, development of symptoms, and efficacy of treatment can benefit PID patients, by shedding light on how to better protect those with compromised immune systems from future viruses and known infections.
Raising awareness of defects of the immune system such as PID takes on an even greater significance amid COVID-19.
Join the campaign, help make a difference! Strike a Y, show support to the PID cause!
Find all campaign materials here.
For more information on the 2022 campaign, read the information toolkit.