An interview with Philip Cawkwell, MS4, NYU School of Medicine, Rudin Fellow 2014-15
By: Katie Grogan, DMH, Associate Director, Master Scholars Program in Humanistic Medicine
Assistance from Tamara Prevatt, Intern, Master Scholars Program in Humanistic Medicine
The Rudin Fellowship in Medical Ethics and Humanities supports medical trainees at NYU School of Medicine - including medical students, residents, and clinical fellows - pursuing year-long research projects in medical humanities and medical ethics under the mentorship of senior faculty. It was established in 2014 through a grant from the Louis and Rachel Rudin Foundation, Inc. and is a core component of the Master Scholars Program in Humanistic Medicine.
Philip receiving his fellowship certificate from Drs. David Oshinsky, his Rudin Mentor, and Lynn Buckvar-Keltz, Associate Dean for Student Affairs, at the Rudin Fellowship Project Showcase, July 7, 2015.
How did you become interested in vaccine refusal and why did you decide to pursue this as a project through the Rudin Fellowship?
Vaccine refusal is something I've been interested in for a long time. As a medical student, and someone with a lot of doctors in my family, it was just accepted that you go to the doctor and get your vaccinations. So, growing up in an age where it felt like there was this huge movement of people who weren't vaccinating their kids, was something that I didn't understand very well. The goal behind this project was to dig a little bit deeper and figure out why this was happening. Why weren't kids getting vaccinated? Where were places with better or worse vaccination rates, and why? I also wanted to figure out what pediatricians can do about it. How can they do a better job of talking to parents and talking to kids and improving vaccination rates overall?
Through your research you discovered that the unlikely state of Mississippi, which consistently ranks at the bottom for other health indicators, has the highest vaccine compliance rate in the country. What's going on in Mississippi?
This is pretty shocking to everyone. Here is a state that is one of the most obese, approximately 35 percent of the population smokes, there is no indoor ban on smoking, and it has the highest rate of infant mortality. Yet, if you look at kindergartners in this state, 99.7 percent have gotten the MMR vaccine series, compared to about 95 percent nationally. That's almost every single kid in the state, and it's remarkable. That was something that I chose to focus on for this project because when you have a 99 percent vaccination rate, you're doing something right. The question is, what did Mississippi do to achieve this?
In one way, they're very fortunate because they have a framework that's in place due to a lawsuit, Brown v. Stone, which was brought against the board of education in 1979. Brown sued the school board in Houston, Mississippi to get his six-year-old son into the elementary school by arguing that his religion precluded him from having his child vaccinated. This went all the way up to the state supreme court that eventually ruled, "No you don't, in fact, have the right to a religious exemption because for the good of the public and society as a whole, sometimes you lose a little personal liberty." In their ruling they went further and invoked the Fourteenth Amendment, which is about equal protection under the law. They said that if they allow a way out of this vaccine statute, then it has to apply equally to everyone. If they allow a religious exemption, then they're discriminating against those who don't have that same religious belief. If they allow a philosophical exemption, then they're discriminating against those that don't have that same philosophy. The way they worded this was very important because it not only shot down Brown's case, but it saw into the future and prevented other personal and religious belief cases in the state. It has stood the test of time. However, it's difficult for other states that don't have this historical legal framework working for them.
It was important for me to figure out what else Mississippi does to maintain this high vaccination rate, so I went there and talked to the health department. Only medical exemptions are permitted, and to get one, the parent has to go through the state health department - it is not enough for the pediatrician to sign off on it. The pediatrician writes a letter and the health department reviews it. You only get that exemption if you have a real medical reason for not getting the vaccine. Further, the health department has a state registry of every child enrolled in school with a list of the vaccines required and a check box of whether or not the child received them. This is what the state epidemiologist calls "unit level accountability." So Mississippi's situation is a combination of this nice legal background and having everything centralized within the state department of health. That's what makes them the leader. (Additional information about exemptions can be found at the end of the interview)
As part of your project, you consulted experts in infectious disease, pediatrics, and vaccine education to explore how the rest of the nation can establish and maintain vaccination programs like Mississippi. What did you learn?
I can start with Mississippi, where I talked to Dr. Thomas Dobbs III, who is the state epidemiologist there. He personally oversees the exemptions and told me a lot about the inner workings of the program. One key thing I learned was that it is a lot easier to maintain a program like this than it is to establish one.
I also talked to a lot of pediatricians. At NYU I talked to Dr. Catherine Manno who is the Chair of the Pediatrics Department. She was able to talk about what it was like going through training at a time when we didn't have some of the vaccines that we do now - things like Haemophilus influenza Type b were routinely killing or crippling children. She commented on how it's remarkable that you can be a pediatrician or someone in training now and never have seen some of those diseases.
I spoke with Dr. Paul Offit at the University of Pennsylvania who has published more than anyone on this topic. He's written a number of books trying to dispel the autism-vaccine link and has developed a vaccine himself. We talked a lot about how it's now becoming popular among parents to try and spread out the vaccine series. People are worried about getting too many vaccines. One thing he was telling me that I think is really important to remember is that there are more vaccines now than there were a few decades ago, but if you look at the actual amount of the vaccine that is in each shot, the amount of antigen you are exposing your child to is much smaller than it was even if you combine all of the vaccines. Because Dr. Offit has been doing this for decades, he was able to provide some perspective. I asked him if he felt optimistic even while seeing the anti-vaccination people in the news everyday. He said with this year's measles outbreak at Disneyland people are finally caring and starting to respond. It was a really positive message from him that things might actually be changing and, indeed, we see that they are.
Philip presenting his research at the Rudin Fellowship Project Showcase, July 7, 2015.
As you mentioned, among younger generations, we don't see many of these diseases firsthand so it's easy to mistakenly believe they've been eradicated. Disneyland was a reminder that this not the case. How did the measles outbreak happen? What did vaccine refusal have to do with it, and were there changes to California's exemption policy as a result?
It started in December 2014, and by February the CDC counted about 110 cases of measles that they could say definitely came from Disneyland. The majority of those cases were children who were either unvaccinated or who had unknown vaccination statuses. I think it was part of the national news and the national conversation and was able to ignite some change in California. The state senators in California who took up this call both had experience with public health. Senator Pan is a pediatrician in California and Senator Allen is the son of a polio survivor, so they both knew how important this was from a personal standpoint. They saw what was happening to their state. California used to have both religious and philosophical exemptions and as of June of this year, they have neither. That was a big change. However, it's important that it's not just California. Vermont got rid of philosophical exemptions this year as well. There are also seventeen other states with some form of legislation concerning vaccine exemptions. In some cases it's to get rid of exemptions and some cases it's making it harder to obtain them. But so far it's just Vermont and California that have actually passed legislation.
Vaccination is an issue that really crystallizes the tension between personal freedom and what's good for society as a whole. Do physicians have a moral obligation to help us reconcile this conflict?
Yes, it's very tough to get people to think about the health of society as a concept rather than the health of their child. If you think about it, these parents are not bad people; they are trying to do what's best for their child. They just have a different view than most pediatricians about what that is. They are really missing the societal aspect to it. Vaccinations are important and necessary because some people can't be vaccinated. If one or two people don't get vaccinated the system won't fall apart because the herd can protect everyone. It's actually safer to be unvaccinated living in a group of people who are vaccinated than it is to be vaccinated living in a group of people who are unvaccinated. And the reason is that around five to ten percent of the time, you don't get full immunity from a vaccine. With parents, there can be this diffusion of responsibility where, "my child does not have to be vaccinated as long as everyone else's is." It's hard to convince someone that you need to be part of the 95 percent that is going to take on that responsibility. It's a really quick snowball when you see states like Colorado, which has the lowest childhood MMR vaccination rate - it's about 83 percent - that's when you start to see problems, when everyone starts to take an individualistic approach.
But you have to look at it from two standpoints - from the parent's and the pediatrician's. Talking to pediatricians like Dr. Manno and Dr. Klass at NYU and Dr. Spiesel at Yale, they all came up with the same scenario: You're a pediatrician and you have someone sitting in your waiting room who can't get vaccinated - maybe he's six months old and not ready for his one-year-old shots yet. Then you have another patient in your waiting room that is sick with a vaccine preventable disease. Because you've allowed that child in your waiting room you now have some liability as a doctor to protect that six-month-old. Now you've exposed him to measles or another potentially deadly illness because you allowed someone who wasn't vaccinated into your office. At the same time, if you say, "As a pediatrician I am only going to see kids who are vaccinated," then what happens to the other kids? Where do they get their care and who sees them? That's a problem too. Several of the pediatricians that I spoke to say they just want to avoid that issue. It's much easier to say, "If you aren't vaccinated, there are a lot of pediatricians around here that will see you so go see one of them." They know they have somewhere else to go, and morally they feel better about that situation than potentially exposing their own patients to someone who isn't vaccinated.
Now if you're a parent, it's a whole other issue. It's this idea that "I'm not going to let the government or the doctor or the establishment make a decision for me about the health of my child." Many talk about it in terms of being forced: "You're forcing my child to get a shot," which isn't technically true. At the same time, there is something that has to be said for herd immunity and protecting those that can't get vaccinated and protecting the health of children as a whole. But when you have all of these vaccines that have been tested so well with data showing their safety and efficacy and you have diseases like measles and polio that we can protect against, it's hard for me to see a way for a doctor to feel comfortable without advocating for all of their patients being fully vaccinated.
What can the medical community do to motivate people who are confused or misinformed about vaccines? Would doctors' offices saying "we will only see patients who are vaccine compliant" compel conscientious objectors to rethink their stance?
It's a really good question. There are two groups of people who won't vaccinate their kids - a group who can be convinced and a group who can't. The really staunch anti-vaccination people, they're settled. They've made up their minds, and there isn't a story you tell them or statistics you give them to change their stance. Then there's a group who aren't vaccinating because they're under-informed or they're a little uncertain. That's the group that is really important because they can be convinced. That's the danger of having a blanket policy that you won't see those kids unless they get vaccinated. Maybe the parents could have been convinced and you shoved them aside.
The other part of my project, besides looking at Mississippi, was looking at strategies for convincing parents to vaccinate their kids. Specifically, I looked at strategies that weren't based in statistics. Doctors love statistics - they speak the language of the p-value and talk about randomized controlled trials proving the efficacy and safety, and that doesn't mean a whole lot to most parents. I looked at narrative medicine and the power of storytelling and whether physicians can talk about stories of patients they've had that weren't vaccinated, or even a personal story about how their kids got vaccinated and how well that's worked out for them. But the problem is that this takes time. When 80% of well-child visits in this country are less than twenty minutes long, it's hard to take five minutes to talk about why vaccines are safe. It's a lot easier to say, "You have to get vaccinated. Vaccines are safe. Here's an information sheet." That's a really complex problem where there's not a great solution at this point.
In addition to considering a narrative approach, you also looked to print media, especially political cartoons, to analyze the anatomy of the vaccine wars. Is there one particular image that you came across that captures the essence of this contentious topic?
There's a cartoon is of a blindfolded man labeled "anti-vaccinationist" walking off a cliff labeled "misinformation" into a big lake of smallpox. My favorite part about it is that it's not a current cartoon but from 1930. So it's this reminder that this isn't new; it's maybe new in the pubic consciousness and becoming a big thing in the media. As long as there have been vaccines, there have been people who have fought against compulsory vaccination. It's always been really tough to convince people that they need to do something for society and that they aren't making a big mistake. It's been played out over and over again every single decade since the 1850's.
Anti-vaccination cartoon, from cartoon booklet, "Health in Pictures," 1930
So, it's stories, both in narrative or visual form, that resonate with people more than numbers and scientific studies. Can you elaborate on this in the context of the now-discredited 1998 Wakefield study that first claimed a link between the MMR vaccine and autism? Why has it had such a lasting impact?
The Wakefield study is really important because it shows how scientists and the lay population look at information differently. The original Wakefield study was a case series of twelve patients and was published in The Lancet. The scientific community then did large studies and meta-analyses looking at thousands of kids and completely discredited the original Wakefield paper. As far as the scientific community is concerned, that was great. That's how science works - you have a hypothesis, you run a test, and come up with a conclusion. Someone else can run the test differently and see how thing stack up. That's why the issue is settled in the scientific community. With the population at large, that's not the case. In 2009, 25 percent of people in this country still believed that vaccines cause autism. Over a decade after this study has been completely debunked and it was proven that the researcher was engaging in deliberate fraud, the public hasn't gotten that message. All these studies that all these scientists are running, what do they mean if no one really understands them or accepts them? That's why you have to think about the way scientists convey information. The anti-vaccination people do a really great job at getting their information out through social media, the Internet, by having spokespeople who can get through to someone who doesn't know what a p-value is but knows what autism looks like.
You're planning to train in pediatrics so you'll be navigating this first-hand - conveying scientific information in a way that resonates with parents and children. What do you think your approach will be, and how has this project informed it?
From a personal standpoint, my goal is going to be to get 100 percent vaccination rates. Part of that is going to be reading parents and seeing what appeals to them. For some, statistics will be great and they will want to see the studies. For some it will be telling them, "Hey, I've personally vaccinated all these kids and have seen them develop and do great." It's explaining how autism works and that there is no link to vaccination at all. There is no proven blanket strategy, so I think that individualizing it will be very useful to me.
What do you think is the path forward with vaccinations in our country? Are we going to see changes at the national level?
I think it is unlikely to see the federal government taking on this matter. This has really been a states' rights issue over the years. Unfortunately, it takes outbreaks like the one at Disneyland to spark change. Maybe it will be more outbreaks. Maybe that will wake people up. Maybe the California one will be enough and all the states that are starting taking up this issue will push through. But it's still really difficult in this country where you have such a vocal opposition. It's hard to be more than cautiously optimistic. I've seen things improve just over the last year - but still there are only three states with policies to limit vaccination exemptions. There are still 47 to go and I think that will take some time.
Types of Vaccine Exemptions
Exemptions differ on a state-by-state basis, but it boils down to three different kinds.
- First, every single state allows for medical exemptions, and there are a lot of reasons why a child might need a medical exemption. For example, if you are receiving chemotherapy and your immune system is weaker, you don't want to get a live virus vaccine.
- The second kind - and about 47 states have this - are religious exemptions. Again, it varies from state to state as to how much evidence you have to provide that you have a religious belief that is counter to receiving vaccinations.
- The third kind - and I think seventeen states have these - are philosophical/personal belief or conscientious objector exemptions, and these run the gamut of pretty much anything. These are usually designed by the legislature as a catchall to let parents have a way to opt-out.
For some states, like Wisconsin, it's just a check box on a form, you check "personal belief," and that's it - nothing else is required. In Georgia has you send in a notarized statement explaining the philosophical exemption, so you have to actually articulate the reason you are philosophically opposed to vaccination. New York has a religious belief exemption, and we also have the medical exemption. There is no philosophical exemption in New York.
*You can read more about Philip's research in his recently published articles "Storytelling in the context of vaccine refusal: a strategy to improve communication and immunization" in Medical Humanities, and "Childhood vaccination requirements: Lessons from history, Mississippi, and the path forward" in Vaccine.