Pam Stacy lives in a small town in Indiana with a population of about 40,000, far from an urban medical center. When an immunologist diagnosed her with common variable immune deficiency (CVID) two years ago, she was only one of three patients her doctor had ever treated with a primary immunodeficiency (PI).
Stacy, 68, felt relief after the diagnosis because she struggled with lifelong infections, the most recent one being pneumonia for a year and half. Once Stacy considered how rare her condition was, she wanted to be under the care of a specialist with experience in PI. A visit to the Immune Deficiency Foundation (IDF) website led to the discovery of the IDF Clinician Finder, a resource that provided Stacy with a specialist familiar with her condition. Within two weeks, she had an appointment with an immunologist specialized in caring for persons with PI.
“She really listens and takes time with me and wants to know what’s going on,” said Stacy, who is now using immunoglobulin (Ig) replacement therapy. “Ig saved my life.”
The IDF Clinician Finder is an online tool that offers access to names and addresses of providers specializing in PI. The searchable provider database includes those not only in the field of immunology but also allergy; ear, nose, and throat; family practice; gastroenterology; hematology; infectious disease; pediatrics; internal medicine; pulmonology; and rheumatology.
“This is a very valuable resource for the PI community because it allows people to find specialists who understand primary immunodeficiency and how our health needs can be different from the average population,” said IDF Manager of Medical Programs Colleen Brock.
“It started as a way for people to find immunologists who specialized in PI, and then it grew to include all kinds of specialists.”
To use the IDF Clinician Finder, visitors create an account with IDF or log on to an existing account and go to the Clinician Finder page, where they can search for a specialist by distance from a current location or a specific address, or within a state. Users may also enter search parameters, including a clinician name, specialty, and patient type (pediatric or adult).
Search results yield contact information, including a name, address, and phone number, along with a map showing the exact location of the provider and a link to the provider’s website.
The Clinician Finder is a self-reported database meaning that providers enter their name, specialty, and contact information. IDF doesn’t endorse the providers in the Clinician Finder, and won’t remove a provider if a patient is not satisfied with their care from the provider.
“None of the information in the clinician finder is verified, so do your due diligence and research the doctor before making the appointment. Make sure they are right for you—and that they take your insurance. We only provide the basic information, and it’s up to the patient to screen them and decide if that doctor is the right choice for them,” said Brock.
Patients can help increase the number of providers in the Clinician Finder by suggesting to their doctor that they join it and maintain accuracy in the Clinician Finder by reporting clinicians who have retired, changed practices or moved. Change in provider status can be reported in either in the Clinician Finder or through Ask IDF.
“I think the Clinician Finder is a huge resource for the PI community, and physicians like it because it helps them grow their practice,” said Brock.
If patients can't find the type of specialist they're looking for in the Clinician Finder, they can find support by joining IDF Friends or an IDF Get Connected Group which are online platforms for persons with PI to share information and personal experiences. Members of these platforms may have recommendations.
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