Underserved communities have difficulties when trying to access the resources that are available to the majority. Because of this, more work has to be done to ensure that everyone can utilize the resources they need. The Immune Deficiency Foundation (IDF) is doing just that. According to PR Newswire, the patient organization is expanding its Spanish language resources to help primary immunodeficiency (PI) patients in underserved communities.
Work to Increase Access
The goal of this expanded access is to raise awareness of PI within the Spanish-speaking communities in the United States. This way, the time it takes to receive a diagnosis is shortened, which allows for earlier intervention. Because PI is rare, the time to diagnosis is already lengthier than that of more common disorders. When adding the factor of living in an underserved community, this time becomes even longer.
In order to increase access, the IDF hosted its first virtual education session that was done completely in Spanish. Dr. Vivian Hernandez-Trujillo explained how the immune system functions before PI’s effect on the body. More than 22 states were represented by the 120+ attendees. In regard to the session, Dr, Hernandez-Trujillo said,
“I am proud to be part of IDF’s expanding efforts to reach across racial and socioeconomic barriers to increase access to information and treatment for people just learning about or living with these diseases.”
Additionally, the PI Conference, which was held from June 23-26, had many sessions that were either presented or captioned in Spanish. Grupo de Apoyo and a Spanish virtual support group were launched at this conference as well. (You can read PatientWorthy’s recap of the conference here!) Beyond this conference, the organization offers printed and digital materials for patients, medical professionals, and families in a number of languages. Advocacy and education resources are available on their website.
Primary immunodeficiency (PI) disorders are a group of inherited disorders of the immune system. Affected individuals do not have properly functioning immune systems, leaving them extremely susceptible to infections. The type of PI impacts what kind of infections one is prone to. A few common forms include common variable immunodeficiency disease, severe combined immunodeficiency, and chronic granulomatous disease. These conditions are the result of genetic mutations, the majority of which are inherited from parents. However, sporadic mutations can cause PI disorders as well. In terms of treatment, there is no cure. A treatment plan should be tailored to each individual patient based on their case.