Primary Immune Tribune   Primary Immune Tribune
  E-newsletter of the Immune Deficiency Foundation

December 2010  

IDF Action Alert!
Join Marcia at Her “Kitchen Table”
IDF 2011 National Conference
Visiting Professor Program
IDF Holiday Cards on Cafe Press
Since You Asked
IDF Calendar of Events
Since You Asked
IDF Question and Answer

I run a small family-owned business and my daughter has CVID.  I am meeting with my insurance broker to change our health insurance coverage and I want to make sure   that I ask all the right questions before making the switch to a new company.  Is there a list of questions that I should address with my insurance broker?

Yes.  Before switching to a new insurance company, you should ask your broker or potential new insurance company the following questions so that you minimize the risk of “surprises” after you make the change.

• Will the policy cover a chronic or pre-existing condition/illness such as a Primary Immune Deficiency?

• Will the policy cover intravenous (IVIG) or subcutaneous (SCIG) treatment?

• Are there any annual or inside limits specifically for IG treatment?

• Are there any annual or inside limits on all treatment for pre-existing conditions?

• Is there a co-pay or co-insurance that must be paid for IVIG treatment? If so, how much or what is the percentage?

• Does the policy cover dependents and spouse/domestic partner? Until what age or event?

• Is there a waiting period before a pre-existing condition or illness will be covered and services paid for? If so, how long?  Also, can it be waived?

• Is home service covered? Are nursing services and supplies associated with infusion covered?

• Will the policy allow for use at both an “in-network” and “out-of-network” provider, physician, and pharmacy? If so, what are the differences in cost?

My 4 year old son was just diagnosed with X-Linked Agammaglobulinemia. I would love to talk to other parents who have children with a primary immune deficiency but I’m not sure where to find them.  No one seems to understand what we are going through or what we can expect in terms of how this will affect his life on a day to day basis.  Can you provide any help?

We know that sometimes a patient or family member just needs to talk to someone who “has been there”. IDF connects patients and their families with others who have gone through similar situations to share experiences, encouragement and understanding. Peer contacts may also provide information on local resources, plan educational or support group meetings, increase awareness of primary immune deficiencies in their communities, and serve as advocates in both local and federal public policy arenas.

This free resource is for anyone personally affected by primary immunodeficiency - a patient, parent or other family member, friend or caregiver. And you can take comfort in knowing your communications and correspondence will be held in the strictest confidence.

Just contact the Immune Deficiency Foundation at or call 800-296-4433. An IDF staff member will contact you and get to know you and your needs. The IDF staff member will make arrangements for a volunteer peer consultant to contact you by phone or e-mail, however you prefer. Remember - you are not alone.


Powered by IMN