Early Diagnosis of Children with Primary Immunodeficiencies Focus of National Awareness Campaign for School Nurses
The Jeffrey Modell Foundation and National Association of School Nurses are preparing an information blitz to improve early referral and diagnosis
KING OF PRUSSIA, Pa. — 18 August 2014
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 market place 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.
About CSL Behring
CSL Behring is a leader in the plasma protein therapeutics industry. Committed to saving lives and improving the quality of life for people with rare and serious diseases, the company manufactures and markets a range of plasma-derived and recombinant therapies worldwide.
CSL Behring therapies are used around the world to treat coagulation disorders including hemophilia and von Willebrand disease, primary immune deficiencies, hereditary angioedema and inherited respiratory disease, and neurological disorders in certain markets. The company’s products are also used in cardiac surgery, organ transplantation, burn treatment and to prevent hemolytic diseases in the newborn.
CSL Behring operates one of the world’s largest plasma collection networks, CSL Plasma. CSL Behring is a global biopharmaceutical company and a member of the CSL Group of companies. The parent company,
CSL Limited (ASX:CSL), is headquartered in Melbourne, Australia. For more information, visit
About Jeffrey Modell Foundation
Vicki and Fred Modell established the Jeffrey Modell Foundation in 1987, in memory of their son Jeffrey, who died at the age of fifteen from complications of Primary Immunodeficiency – a genetic condition that is chronic, serious, and often fatal.
JMF is a global nonprofit organization dedicated to early diagnosis, meaningful treatments and, ultimately, cures through research, physician education, public awareness, advocacy, patient support, and newborn screening. The Jeffrey Modell Centers Network (JMCN) includes 556 physicians at 234 academic institutions in 196 cities and 78 countries spanning 6 continents. For more information about PI, visit
www.info4pi.org or email the Jeffrey Modell Foundation at email@example.com.
Natalie de Vane, CSL Behring
Chris Florentz, CSL Behring