Skip to main content
IDF logo

Be your healthcare general manager in journey with PI

August 22, 2022

The journey of maintaining your health – doctor appointments, lab results, x-rays, prescriptions, diagnoses, referrals – when you have a primary immunodeficiency generates a significant amount of paperwork. While it may seem overwhelming, it’s essential to keep all of the documentation. Having records of your health history affects diagnosis, the discovery of infection patterns, treatment course, communication between specialists, and importantly, health insurance coverage.

“Please put the paperwork someplace that it is safe,” said Colleen Brock, Immune Deficiency Foundation manager of medical programs, in a recently presented Immune Deficiency Foundation (IDF) forum, “Navigating Access to Quality Care.”

“Navigating Access to Quality Care” provides listeners an overview of the most germane points when seeking care for a PI including patient rights, signs of PI, diagnosis, treatment, and communication with your healthcare team.

Stay organized

Know the name of your diagnosis, understand how it affects your health, and be able to recall who made the diagnosis, when it was made, and what data led to the diagnosis. Because the volume of information grows with each appointment and test result, it’s critical to devise an organizational system. Create file folders, keep a notebook, maintain a calendar, and obtain health records through electronic portals. You can also download IDF’s Emergency Care Card to carry with you in case of admittance to the ER or urgent care.

Having a record of your experiences with PI not only guides your provider and other specialists as they treat you but also supports you in obtaining health insurance coverage for your medical needs.

Understand Ig therapy

While many treatments exist for PI depending on the diagnosis, the most common one is immunoglobulin replacement therapy (Ig therapy). Know that you have options. Ig therapy may be administered subcutaneously (SCIG) or intravenously (IVIG).

“It’s a medical decision based on whether you can handle the peaks and troughs that you get with IVIG or whether you need to have a constant level in your system as you do with subcutaneous, but it’s also a lifestyle choice,” said Brock.

“If you’re choosing IVIG, you can either have it at an infusion center, or you can have it at home, and you have a nurse, or infusion center, responsible for everything. With subcutaneous, you are in control; you decide when to have it and where you want to do it.

“It’s something you need to work together on with your healthcare provider, but I strongly encourage you not to be pressured into it one way or another. Hear them out, listen to what they have to say, and see if you can come to an understanding of what you prefer.”

Just as you should fully understand your diagnosis, you should also be able to recall:

Along with members of your care team like your family, friends, doctors, nurses, mental health providers, pharmacists, social workers, and insurance companies, the specialty pharmacy that supplies you with Ig therapy plays a major role in maintaining your health.

Remember that specialty pharmacy representatives are on call 24 hours a day, and can assist you with potential side effects, discuss drug interaction and dosing, and address small changes in your therapy that can make a big difference in the ease and comfort like pre-medication, needle length, and rate of infusion.

Focus on communication

When it comes to coordinating care, you are the general manager of your health team, said Brock. Successful appointments require asking questions and following up to make sure medical information is shared between specialists. Consider bringing a friend to appointments and compare notes, or even record the appointment if you are alone.

Healthcare providers should be willing to listen, answer your questions, and address your concerns. If they are dismissive or belittle you, try having a frank but kind conversation with them.

“Communication is huge, and when you are talking to your doctor, especially when you are in a situation where you do not see eye to eye, the most successful thing to say is. ‘I understand what you are saying, and I understand that this is not what you prefer but this is what I prefer and this is what I feel most comfortable with so how can we meet in the middle?’” said Brock.

If the provider continues to be unresponsive to your needs, seek a second opinion or a new provider.

“If you’re leaving an appointment with unanswered questions or a lack of information, that’s not the right person for you, and you should replace them. Having healthcare providers who are on your team and will communicate with others is vital,” said Brock.

“You are your best advocate. You know your health – and body – the best.”

Choose a new provider

What kinds of considerations should you keep in mind when you are ready to take the step of replacing your healthcare provider? Consider asking the following questions of potential new providers:

  • Do you accept my insurance?

  • Do you diagnose and treat patients with primary immunodeficiencies? How many?

  • Do you prescribe both IVIG and SCIG immunoglobulin replacement therapy?

  • Do you prescribe more than one brand of immunoglobulin?

  • Do you offer patients receiving IVIG the option of receiving their infusion in a medical or home setting?

Finally, remember to access the free materials IDF has to offer, including the Clinician Finder, the IDF Patient & Family Handbook for Primary Immunodeficiencies, the IDF Guide to Immunoglobulin Replacement Therapy for People Living with Primary Immunodeficiency Diseases, and the School Guide for Students with Primary Immunodeficiencies.

Listen to “Navigating Access to Quality Care" on the IDF Podcast.