What is primary immunodeficiency (PI)?
According to estimates by the Immune Deficiency Foundation, there are approximately 250,000 people in the United States diagnosed with different types of PI.10,11 The National Institutes of Health estimates that there are half a million people in the United States who currently have primary immunodeficiency and are not yet diagnosed.12
Is PI different from autoimmune diseases?
Although, the abnormalities in the immune system that results in PI can also sometimes lead to autoimmune diseases.7
Is PI different from secondary immunodeficiency disease?
The most well-known secondary immunodeficiency is acquired immunodeficiency syndrome (AIDS), which is caused by the human immunodeficiency virus (HIV).7
Is PI different from PIDD?
What are signs of PI?
For adults they are:
- Two or more new ear infections within 1 year.
- Two or more new sinus infections within 1 year, in the absence of allergy.
- One pneumonia per year for more than 1 year.
- Chronic diarrhea with weight loss.
- Recurrent viral infections (colds, herpes, warts, condyloma).
- Recurrent need for intravenous antibiotics to clear infections.
- Recurrent, deep abscesses of the skin or internal organs.
- Persistent thrush or fungal infection on skin or elsewhere.
- Infection with normally harmless tuberculosis-like bacteria.
- A family history of PI.
You may want to speak to a physician about PI if you or someone you know is affected by two or more of the above warning signs.14
How come I've only started to show signs of PI now?
Why does it take so long to diagnose PI?
Who should be tested for PI?
I think that I, or someone I know, may have PI. What should I do?
If you need assistance locating a physician who has experience diagnosing and treating Primary Immunodeficiency, both the Immune Deficiency Foundation and Jeffery Modell Foundation have resources available to help you locate a physician.
What kinds of financial resources are available to me?
Are there any foundations for patients with PI?
Are there any community events or conferences related to PI that I can attend?
The Jeffery Modell Foundation also has a number of resources that are available to people living with PI. Additionally, they are committed to empowering the community with "Calls to Action," which are meant to bring the global medical community together to help enhance early diagnosis with access to equal and appropriate treatments for all patients around the world. You can find out more information at http://www.info4pi.org/town-hall/calls-to-action.
Are there any places where people living with PI can contact to support one another online?
- Visiting MyIgSource.com or calling 1-855-250-5111, a rich resource where people living with PI and caregivers can get in contact with Patient Advocates.
- The Immune Deficiency Foundation's discussion boards. More information can be found at http://idffriends.org.
- The Jeffery Modell Foundation has an "Internet Café," where you can access their social media sites, such as Facebook, YouTube, Instagram, and Flickr, which can be found at http://jmfworld.com/internet-cafe.
Are there PI-specific support programs?
- Patient Advocate Support – One-on-one support from other people living with PI and caregivers of PI.
- Educational Resources and Tools – Educational books, magazines, emails, tools, and more to help manage PI.
- Insurance Information and Financial Support – Help understand health insurance, navigate the coverage process, and obtain financial support, including copay assistance for all Shire Ig products.
- Nurse Advocate Support – Experienced nurses who are available to answer questions about PI and administering Shire Ig treatments. Nurse Advocates cannot provide medical advice. For medical questions, please contact your physician.
To learn more about MyIgSource, visit www.MyIgSource.com or call 1-855-250-5111 to speak with a Patient Advocate.
The Immune Deficiency Foundation (www.primaryimmune.org) also has a support section on their website, under the "Connect" tab. In this section, you can find a blog, videos from patients and caregivers, an IDF newsletter, and volunteer peer support.
The Jeffery Modell Foundation has an "Internet CafÃ©," where you can access their social media sites, such as Facebook, YouTube, Instagram, and Flickr, which can be found at http://jmfworld.com/internet-cafe.
Learn more about Association and Patient Organizations here.
What can be done to raise awareness of PI?
Additionally, the Jeffery Modell Foundation is dedicated to global awareness of PI, physician education, research, patient support and advocacy. In 2004, they created the first-ever public service advertising (PSA) campaign for Primary Immunodeficiency, to coincide with their focus of public awareness and physician education. Since then, they have continued to expand the reach of the campaign to help bring knowledge to both members of the PI community and the public. To learn more about the Jeffery Modell Foundation's PSA campaign, please visit www.info4pi.org/wjmf/psa-campaign.
What if I'm having problems with my insurance? Are there any resources I can use?
For patients with commercial (private) insurance considering Shire Ig products, MyIgSource (www.MyIgSource.com) can help you understand your health insurance, navigate the coverage process, and apply for financial support, including copay assistance for Shire Ig products. To see how MyIgSource can work with your doctors and insurance companies to help you access the immunoglobulin treatment, or Ig, your physicians prescribe; please visit MyIgSource.com.
How do I know if my insurance plan covers my treatment?
It's important to know if the drugs you take are on your insurance carrier's formulary. Check the formulary by visiting your insurance company's web page, and see if the drug your doctor prescribes is listed. Also look to see if the list includes the type of drug you receive, as well as the specific brand your doctor recommends. Sometimes insurance formularies will list only some of the brands that are available for a medication.
If your brand of medication is - or is not - on the formulary, it can affect how much money you or your family will have to pay for the drug as out-of-pocket costs or copays.
Can I change my brand within my insurance plan?
Some insurance carriers have begun limiting access to specific brands of Ig, but many of these insurers also have exception policies in place that may allow continued access to the Ig brand your physician recommends.18,19