Caring for Patients With Primary Immune Deficiency

Apr 25, 2019
Accredo’s Immune Disorders Therapeutic Resource Center® is a critical resource for patients with primary immune deficiency and other diseases of the immune system.
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In recognition of World Primary Immunodeficiency Week, we highlight this condition as well as the clinical care provided by our pharmacists, nurses and patient care advocates in the Immune Disorders Therapeutic Resource Center (TRC).

Primary immunodeficiency diseases consist of more than 300 rare, chronic disorders and affects approximately 250,000 people in the United States. These disorders are caused by hereditary or genetic defects. While some disorders are present at birth or show up in early childhood, disorders can affect patients at any age. While patients’ PI conditions may differ, they all share one common feature: a deficiency in the functions of the body’s immune system, which makes people more vulnerable to infection.

While these infections may be easy for a healthy patient to fight off, the same infection to a patient with PI could be life-threatening. Some of the most common and recurring infections for PI patients are skin, sinus, upper respiratory, and ear infections. These cases can lead to more severe infections that have the ability to affect the lungs, brain and other major organs. Serious health complications are not uncommon for PI patients.  Because of their compromised immune systems, they are at an increased risk of developing recurrent infections, infections that will not clear up despite standard treatment, or unusually severe infections like pneumonia.

Diagnosing PI can be a lengthy endeavor, and many patients go undiagnosed for years. Practitioners collect information through laboratory testing as well as a comprehensive review of medical history, family history, and physical examination. By reviewing the patient’s full medical picture, a diagnosis can be made and the best course of treatment can be determined.

Still, getting sick or not being able to get over being sick is a constant worry for these patients.  With the help of Accredo nurses and pharmacists, patients can work towards their goal of living a healthier life.

Treating PI

Immunoglobulin (Ig) therapy is one of the few treatment options for patients with PI. Ig therapy consists of immunoglobulins, or antibodies sourced from blood plasma from live human donors. Individuals can benefit from Ig replacement therapy if they are unable to produce adequate amounts of Ig or antibodies on their own.

Ig therapy can be administered via an intravenous or subcutaneous infusion.  These infusions are administered in the patient’s home, at an infusion clinic, or a healthcare office. The Accredo team of nurses and pharmacists collaborate to ensure the medication is safely administered, help patients track track any unwanted side effects, and recommend strategies to prevent these side effects.

Patient Care for All Lifestyles

Patients with PI have a lifelong journey ahead. However, Accredo clinicians help patients manage their treatment to fit their lifestyle.  Our clinicians make an impact on patient lives every day. These are just a few examples:

  • A busy college student with a PI disease was unable to keep the all-day infusion appointments at his local infusion center. Through the support of a specialist pharmacist and Accredo’s nursing staff, the patient transitioned  to a home infusion program. He improved adherence to treatment, had no infections and zero missed doses.
  • An Accredo pharmacist discovered a patient had been taking a vacation day every month for 20 years to receive infusions at an outpatient facility. Clinicians collaborated so the patient could receive instructions on self-administering the medication. He now performs his infusions independently on weekends to better fit his schedule.
  • A patient discussed the inconvenience of intravenous infusions to treat his PI due to his traveling schedule. With some help from an Accredo pharmacist, the patient’s doctor, and an Accredo nurse, the patient transitioned to the subcutaneous form of the drug and received training to perform his own infusions. Now, the patient takes his medication wherever he goes, providing himself with the immune protection he needs to reduce infection risk.

These are just three of the hundreds of stories that show how Accredo's Immune Disorders TRC cares for patients.

Author Bio

Theresa Stein
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