School nurses reach 98% of students in U.S. public schools to diagnose primary immunodeficiency

School nurses reach 98 percent of the 50,000,000 students in U.S. public schools, grades k-12, and are uniquely positioned to facilitate the early diagnosis of serious medical conditions such as primary immunodeficiency (PI).

Even when symptoms are recognized and an appropriate referral is made, diagnosing PI can still be challenging because there are more than 250 PIs and they do not always present in clear patterns. As a result, the underlying cause often goes undetected.

In an effort to reduce the number of undiagnosed cases of PI in school children, CSL Behring has awarded a Local Empowerment Advocacy Development (LEAD) grant to the Jeffrey Modell Foundation (JMF) to develop an education campaign in collaboration with the National Association of School Nurses (NASN). The campaign will help nurses recognize the symptoms of PI in school children and facilitate their referral to a physician.

PIs, according to Vicki Modell, Co-Founder of JMF, are underdiagnosed in children who present with chronic, recurring, and persistent infections. "Quite often, school nurses are the first 'line of defense,' in recognizing that these children suffer from repeated infections and missed days at school," Modell said. "Educating school nurses about the immune system and the 10 Warning Signs of primary immunodeficiency will lead to early and precise diagnosis, appropriate treatment and improved quality of life."

NASN is customizing content supplied by JMF to meet the needs and appeal to school nurses as part of the PI awareness campaign. This includes producing English and Spanish-version posters that will be mailed to its approximately 16,000 members. NASN will distribute another 1,500 posters in conference bags at its annual meeting.

In addition, NASN will leverage its journal, websites, social media and weekly digest banner placement to promote PI awareness.

A second communication to school nurses reinforcing messaging around PI will also be distributed. In April, NASN will plan promotional activities around World PI Week, including a radio podcast episode, social media, weekly digest blurb and banner.

Dennis Jackman, CSL Behring's senior vice president for global healthcare policy and external affairs, said educating more school nurses about PIs can have far reaching impact on students and their communities. "Arming school nurses with the knowledge to more quickly recognize symptoms of primary immunodeficiencies, and encouraging them to have candid conversations with students and their families about the disorder, will lead to improved student well-being and success," Jackman stated.

LEAD grants have also been presented to Greater Florida Hemophilia Foundation (GFHF) and Ohio Bleeding Disorders Council (OBDC). GFHF's grant will be used to conduct an educational program for social workers at Hemophilia Treatment Centers in Florida. The program consists of a workshop that offers the most updated information about the Affordable Care Act and Medicaid so that social workers can more effectively assist patients and their families with reviewing and changing plans and/or choosing new insurance plans.

OBDC's grant will be used to support ongoing advocacy initiatives in the state including:

• providing guidance and input to the Ohio Department of Insurance, and also directly to insurance providers, to ensure that issues critical to the bleeding disorders community are considered in all available marketplace plans;
• working with legislators and members of the administration to ensure that any transition of children with hemophilia into Medicaid managed care is continually monitored for accessibility to quality health care.

To date, CSL Behring has awarded 55 LEAD grants to patient advocacy organizations totaling more than $729,000 since the program was established in 2008. Proposals are being accepted for the next grant cycle. The deadline for submitting a proposal is October 31, 2014.