ASPIRE & Dr. Maeve O’Connor – Changing Views on IVIG at the AAP

ASPIRE at the American Academy of Pediatrics (AAP) National Conference

Wendy Nawara, MSW, ASPIRE Past President & Founding Board Member, interviews Maeve E. O’Connor, MD FACAAI FAAAAI FACP on the Changing Views at AAP on IVIG PANS/PANDAS. Full video below.

Wendy Nawara: Dr. O’Connor as you have stood at our booth and you have seen professionals come by what is the most wonderful, for me, is the newly found acceptance we are getting from the AAP. The understanding from resident pediatricians, new pediatricians as well as experienced pediatricians and their understanding of what this (PANS/PANDAS) is, has changed vastly in the past two years. What do you think the implications are of the work you are doing for the community in furthering the acceptance of PANDAS and PANS throughout the community as well as throughout the world?

Dr. Maeve O’Connor: Well I think not only this study but a lot of studies that are ongoing currently are going to continue to change the perception and increase the acceptance. We have been so lucky to be able to present our data so far at the European Academy of Pediatrics, the European Academy of Immunology. We were in Brussels. We were in Portugal. We were at the Georgetown Meeting with Dr. Beth Latimer. We had great interest there from the audience. A lot of people there had great questions. So I think it is going to springboard acceptance within associations like the Academy of Pediatrics because you know their guidelines still don’t recognize this disease. They still don’t recognize the treatment of using IVIG for this disease. So as we know the data is always ahead of the acceptance. But I am hoping the more data we get, the faster global acceptance will occur. I think we are getting there. I would have, five years ago, said that this is going to take forever but as you mentioned in the last two to three years it has truly exponentially grown. I think doing studies like the one we did on IVIG and others are doing is going to make that even easier.

Wendy Nawara: I think you are totally right. I think the advocacy community getting behind this has also grown exponentially. Being able to be at events like this, to talk about our experiences provides a perspective that maybe the physicians haven’t always considered.  The research is kind of over clinical.

Dr. Maeve O’Connor: It’s true.

Wendy Nawara: To hear from both from the researchers as wells from the patient community has really been an enlightening thing for the physicians especially here at the AAP. We are hopeful we are going to see greater changes because of both of these advocacy groups speaking.

Dr. Maeve O’Connor: Absolutely. I will say one thing about physicians is that sometimes when physicians don’t know about a disease, they get scared and say oh well, I don’t know anything about it – must not exist. So having advocacy groups such as yourselves, educating, even if it is slowly and gently, to some of the physicians is so helpful. The more groups we have like yours, who are educating patients, parents, general public, grandparents who may say your child doesn’t have that disease or those who say your wife, she is wrong your little Bobby is fine.  When Grandma comes to this booth and learns one fact, we are one step closer to that acceptance that we need.

Wendy Nawara: It is so funny that you should mention that. We had a grandfather come up to me today who said my daughter is a pediatrician and I am sending her to you because this sounds exactly like what is going on in my family. It’s all about connections.

Dr. Maeve O’Connor: It’s all about connections, education, power.  If you are educated you can be powerful. The more everyone understands it, the better off we are going to be.  The faster that treatment can happen, the better the kids are going to be.

Wendy Nawara: Well the truth is we ASPIRE to empower. Thanks so much. Thank you for your time.


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