22nd-29th April 2022

Access to healthcare means a lot more than you think

#AccesstoCareMatters

Millions live with an inherited immune deficiency – or primary immunodeficiency – worldwide. Each of them deserves access to quality care. Yet this is not the reality for all those living with the disease. Learn why access to care is so important and what it means for patients.

Why does access to quality care matter?

Access to healthcare is a basic human right. People living with primary immunodeficiency worldwide depend on it. It is fundamental to enhance health outcomes, improve social well-being and reduce the burden of the disease for individuals, families and healthcare systems.

Each day of the World PI Week 2022, we will publish stories outlining the reasons why it is so important for patients to get access to quality care.

Eleonora

Charlotte

Thieu

Lizette

What are the main issues?

Early diagnosis

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.

22 April

Newborn screening

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

23 April

Genetic testing

Genetic testing provides a more comprehensive prognosis of a PID and allows determining the best treatment options for patients.

24 April

Access to specialist doctors

Improving access to specialists is one of the key steps to support early diagnosis and care

25 April

Life-saving treatments

Access to quality treatment is lifesaving for patients and needs to be ensured worldwide, no matter where they live

26 April

Immunoglobulin therapy & access to plasma

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

27 April

Transplantation

When transplantation is the best suitable treatment, patients should be guaranteed access without delay

28 April

Gene therapy

Gene therapy holds promise for a potential cure for some PIDs. Measures should be taken to ensure their uptake by health systems and patients’ safe access

29 April

How you can contribute:

From 22-29 April, you can join on social media with #WorldPIWeek, #AccesstoCareMatters or via #MyPIStory.

If you live with a PID: share your experience of living with the disease and what access to care means to you

If you are a health professional: explain why patients’ access to care is so important

If you are a supporter: relay the campaign to help raise awareness and promote change so that everyone with a PID gets the care they deserve