Lynne Szott, RN, CCM (Parent)
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“As a parent to two children with PI, I also recommend that newly diagnosed families learn as much as they can about the condition and treatment options.”
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Condition: Primary Immunodeficiency (PI)
Therapy: Privigen
®, (Immune Globulin Intravenous)
Lynne Szott spends her days helping people with rare and serious medical conditions access the lifesaving treatments they need. Her commitment to assisting others and knowledge of the managed care system in the United States derive from her training as a registered nurse (RN) and more than 20 years of personal experience.
“I have three children, two of whom have been diagnosed with primary immunodeficiency,” Lynne said. “When my second oldest child was 20 months, he experienced an upper respiratory infection that wouldn’t go away. We visited several physicians over five days, when he took a turn for the worse. He was airlifted to a medical center more than 200 miles away from our home and we didn’t think he would survive.”
“We then met an immunologist in the ICU who diagnosed him quickly,” Lynne added.
“He spent at least a month in the hospital and had to undergo several surgeries to help recover. That was our introduction to primary immunodeficiency.”
Lynne and her husband set out to find out as much information about the condition as possible. They learned that primary immunodeficiency, also known as PI, PID or PIDD, is a group of more than 150 disorders, genetic in nature, that affect the cells, tissues and organs of the immune system. For the estimated 10 million people worldwide who are living with PI, the immune system is either deficient or functioning inadequately, leaving them with greater susceptibility to infection.
After her youngest child was also diagnosed with the condition, Lynne decided to switch careers and earned a nursing degree. She also became very active in the Florida (US) primary immunodeficiency community, helping to establish a local chapter of a national patient organization.
“As we met other families in the community, we realized many had questions about insurance,” Lynne said. “My husband and I then started teaching these families about costs and insurance rules and regulations.”
Nowadays, Lynne serves as National Reimbursement Manager for CSL Behring. In this role, she leverages her expertise at the payer and consumer group level to help people with rare and serious diseases nationally.
“As the US moves forward with heath care reform, it is vital that rare and orphan diseases are not left out of the discussion and that lifesaving treatments for these disorders remain payable,” Lynne says. “The advice I offer to others who may be experiencing what my family went through is that early detection leads to quality care and quality care leads to cost effective care. I also recommend that newly diagnosed families learn as much as they can about the condition and treatment options.”
Currently, Lynne’s family members manage their condition with Privigen® from CSL Behring. Privigen® is the first and only intravenous 10%, ready-to-use liquid immunoglobulin (Ig) therapy stabilized with proline.
“Effectively managing primary immunodeficiency allows our family to lead a relatively normal life,” Lynne said. “When the kids aren’t studying hard they enjoy camping, traveling and playing golf.”
She added, “It wasn’t always easy, but we strived to create a sense of normalcy as the kids grew up and we also worked hard to teach them not to identify themselves by their condition.”
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Contact for Personal Stories:
Greg Healy
Senior Manager, Communications & Public Relations
Commercial Operations
610-878-4841
greg.healy@cslbehring.com