© 2009 Autism Science Foundation, Inc. All Rights Reserved. Making the CASE for Vaccines: Communicating Vaccine Safety Data to Parents Alison Singer Autism Science Foundation CDC National Immunization Conference April 21, 2010

© 2009 Autism Science Foundation, Inc. All Rights Reserved. How Did We Get Here? MMR Thimerosal Too Many Too Soon

How Did We Get Here: MMR 1996: The Lancet publishes a paper by british researcher Dr. Andrew Wakefield indicating MMR might cause autism. (later recanted by co- authors and withdrawn by Lancet) Enough to set off a scare. –MMR compliance plummets. –Mumps Measles and Rubella cases rise. Multiple Studies indicating No relationship 2009: Vaccine Court Ruling Wakefield paper retracted Hard to unscare people © 2009 Autism Science Foundation, Inc. All Rights Reserved.

How Did We Get Here? Thimerosal Not vaccines themselves but “vaccine components” AAP recommends thimerosal be removed “to make safe vaccines safer”. Thimerosal removed by end of But rate of autism diagnosis does not come down. Same rate as Multiple Studies Indicating No Relationship 2010: Vaccine Court Ruling Hard to unscare people © 2009 Autism Science Foundation, Inc. All Rights Reserved.

Why are We Still Here? Science clearly shows no link Move goalposts: –Not just thimerosal but also mercury in air and water –Hep B may cause autism –Too many too soon (immune overload) Media Loves Controversy Anti-vaccine Movement Has a Celebrity Spokesperson Existence of Good Science Suggests Problem is Communication © 2009 Autism Science Foundation, Inc. All Rights Reserved.

Communicating Science Good news: 85% of parents –want to be convinced –make the vaccine decision in the doctor’s office –believe information they receive from their pediatrician © 2009 Autism Science Foundation, Inc. All Rights Reserved.

Traditional Framework for Communicating Science Identify the information essential for decision-making Formulate message, drawing on the research © 2009 Autism Science Foundation, Inc. All Rights Reserved.

Traditional Framework for Communicating Science No data support a causal relationship between vaccines and autism. –Here are the studies Vaccines save lives. Therefore your child needs to be vaccinated. No Longer Enough © 2009 Autism Science Foundation, Inc. All Rights Reserved.

New 4-step Framework for Communicating Science: Making the CASE for Vaccines C orroborate: Acknowledge the parents’ concern and find some point on which you can agree. This sets the right tone A bout Me: Describe what you have done to build your knowledge base and expertise S cience: Describe what the science says E xplain/Advise: Give advice to patient, based on the science © 2009 Autism Science Foundation, Inc. All Rights Reserved.

People behave rationally when: They get relevant information in a concise, comprehensive format that seems credible They feel their concerns are heard When they feel control over their decision They do not feel belittled Parents evaluate the message and the message deliverer © 2009 Autism Science Foundation, Inc. All Rights Reserved.

Barriers Not enough time with each patient (not reimbursed for this) The media captures public attention; I can’t compete with Jenny Parents come in with bad information from the internet (Dr. Bob’s Schedule) Anecdotes are powerful © 2009 Autism Science Foundation, Inc. All Rights Reserved.

Top Three Parent Concerns about Vaccines Vaccines Cause Autism The diseases are not so bad (better to fight them naturally) Too Many Too Soon (let’s slow down the schedule) © 2009 Autism Science Foundation, Inc. All Rights Reserved.

I heard on tv that vaccines cause autism C orroborate: There’s certainly been a lot of coverage on television about vaccines and autism so I can understand why you have questions A bout Me: I always want to make sure I’m up to date on the latest information so that I can do what’s best for my patients, so I’ve researched this thoroughly. In fact, I just returned from a professional conference… S cience:The scientific evidence does not support a causal link. The CDC, the AAP, the NIH, the IOM (etc) all reviewed the data and all reached the same conclusion. Dozens of studies have been done. None show a link. E xplain/Advise: Vaccines are critical to maintaining health and wellbeing. They prevent diseases that cause real harm. Choosing not to vaccinate does not protect children for autism, but does leave them open to diseases. Kids need these vaccines. © 2009 Autism Science Foundation, Inc. All Rights Reserved.

Measles isn’t so bad. I had chicken pox and I was fine. C : I can understand why you might feel that way. Hey, I had chicken pox myself A : The vaccine program has been so successful and a lot of the diseases that we feared, like polio, are no longer a concern. Until last year, I had never seen a case of HIB or measles, but now these diseases are making a comeback. In my practice….. S : These diseases have come back in areas where vaccinate rates are low. Last year, 5 children died of HIB. Five cases of mumps have been diagnosed in NYC. E : We care about our patients and don’t want to practice substandard care. All our patients need to be vaccinated. © 2009 Autism Science Foundation, Inc. All Rights Reserved.

I want to spread out the shots so they won’t overwhelm my child’s immune system C : Kids today certainly get more shots than kids did years ago A : Our practice follows the CDC schedule because it is carefully designed to protect children at the time they are most vulnerable to disease. I recently returned from a meeting, or I served on a committee that reviewed the schedule S : Although kids get more shots today, they actually receive fewer antigens than when they got fewer shots, because technology has enabled us to make vaccines that have only the part of the cell that induces immune response. Plus, the immunological challenge from a vaccine is nothing compared to what kids fight off every day. An ear infection is a bigger immunological challenge. “Drop in the ocean” E : We want all the kids in our practice to be immunized so that they have the greatest chance for a long, healthy life. © 2009 Autism Science Foundation, Inc. All Rights Reserved.

Anticipate parents concerns. Answer questions before they are asked –Give out CDC vaccine information sheets for upcoming shots, not just day of –Include vaccine education as part of pre-natal classes or infant care classes –Meet with small groups of parents to discuss vaccines –Meet with school staff in your community. Parents often rely on their advice – © 2009 Autism Science Foundation, Inc. All Rights Reserved. Other Actions

Create and use accessible fact sheets and booklets Post mainstream media stories on bulletin boards in the office (Parents Magazine, May 2010) Use/display “point of care” materials developed by CDC, NIH, AAP, other advocacy groups Partner with local researchers to disseminate related research. Redistribute their newsletters, websites Point families toward message-compatible advocacy group websites (including parents groups) and materials. © 2009 Autism Science Foundation, Inc. All Rights Reserved.

Autism Science Foundation Founded by parents of children with autism Focused on Science Work closely with AAP, CDC, NIH, AAFP, AMA, etc Specific web page on Autism and Vaccines that lists all the studies © 2009 Autism Science Foundation, Inc. All Rights Reserved.