To Protect Other Patients, Some Doctors Are Showing Those Who Refuse to Vaccinate the Door
An oncologist is screaming bloody murder at another doctor in a white-hot rage over a prescribed course of treatment. No, it's not about an untested experimental cancer drug but the best-proven disease-fighting technique that America has ever employed: vaccinations. The oncologist cannot believe that he is being told to start vaccinating his seven children -- longtime patients in the practice -- or else he will have to be referred to another doctor.
Dr. Joanna Weir can't hear the details through the door of the closed examination room where her colleague is being shouted down by not only a patient but a longtime personal friend, but she is there to see the oncologist throw open the door and storm out with his hands clenched in rage, never to return, and calling them all stooges as he leaves. Apparently, he fervently believes that vaccinations are a giant moneymaking scam that he will have no part of, her colleague tells her later.
"This was the first time I had ever heard a paranoid conspiracy theory about Big Pharma," says Weir (which is not her real name, but more on that later). "My friend tried for three months to make him see reason and to understand that's not the case. He could not be swayed. He just believed companies made people sick to sell them medicine. I watched my friend beating his head into a wall.
"It was rather shocking to us because our clinic is known for not even allowing pharmaceutical reps to come in except under strict guidelines that include absolutely no freebies. They lost their friendship over this."
The clash was the result of a policy that Weir and other doctors at her practice instituted eight months ago after she read a newspaper article about a New England clinic. Doctors at that clinic had decided they were no longer going to accept patients who refused to vaccinate for nonmedical reasons.
Weir, who had watched the number of measles cases in the United Stages grow, thought it sounded like a good idea and decided to adopt the same policy. Two more doctors in the practice followed suit, then pediatrician friends she discussed it with and then more and more as dozens of doctors she knows quietly began approaching voluntary non-vaccination as a potential threat.
"In this practice, we have elderly patients who have compromised immune systems, and I often see children too young to vaccinate for measles while they transition from my family practice to a pediatrician," says Weir. "We had to consider our patients."
It's a policy that is becoming increasingly common nationwide. *The Physician's Computer Company, a firm that provides data handling for 1,000 pediatricians in America, ran a survey among its clients earlier this year to see how many refused unvaccinated patients. Nearly 500 responded, and 54 percent of those who did said that patients had to vaccinate or find another doctor.
"I didn't think it would be a majority," Chip Hart, director of strategic marketing at PCC and principal author of the study, told Think Progress. "My gut feeling was that it would be in the 30-40 percent range."
The change is not without controversy and maybe even danger for doctors. Weir says her clinic has already received emailed death threats, sent after the clinic instituted the policy, which she compares to the sort of communications abortion providers get. Of the many doctors we approached for this story who we were told were no longer accepting non-vaccination patients, only Weir would speak with us, and even then only through a pseudonym. Similarly, the doctors we contacted who we were told would accept such non-vax patients declined to speak beyond confirming that they did so.
The reason doctors are being forced to decide one way or the other is the return of diseases previously thought eradicated in the United States. In 2000, the United States was declared free of homegrown contagion of measles, something the Centers for Disease Control and Prevention attributes to the success of the vaccine invented by John F. Enders and Dr. Thomas C. Peebles in 1963. According to the CDC, prior to widespread vaccination, the virus infected millions of Americans, hospitalizing 48,000 annually and killing an average of 500 people a year. Complications from the disease can include permanent hearing loss, pneumonia and encephalitis leading to brain damage. Out of every 1,000 children who contract measles, one or two will die.
By 2004, America saw as few as 37 cases annually, all from exposure to disease brought in by foreign visitors. It's still the case that measles remains an imported virus, but outbreaks have become more common thanks to a growing anti-vaccination movement. Reluctance to vaccinate gained popular support following the publication of a long-since-debunked Lancet research paper by Andrew Wakefield in 1998 that claimed to show a connection between the measles, mumps and rubella (MMR) vaccine and autism. Numerous studies were unable to reproduce Wakefield's results, and the paper was retracted amid concerns of unethical practices in his research and possible financial conflicts of interest on the part of Wakefield. He was later stripped of his license to practice medicine, but his findings were touted by celebrities such as Jenny McCarthy and Kristin Cavallari and continue to form the basis of many common objections to vaccination from parents, according to Weir.
"Their main concern is the autism," she says. "Even though there are a wealth of studies that show there's no causal effect, they think there is."
What Would Happen If We Stopped Vaccinations?
From the Centers For Disease Control and Prevention
Recently a measles outbreak occurred in California, spreading out from the international tourist destination that is Disneyland. More than 150 cases have been reported linked to exposure at the park, extending to eight states as well as Mexico and Canada. The California Department of Public Health determined that the type of measles in the majority of those infected was of a kind commonly found in the Philippines, where 50,000 cases still occur each year and claim the lives of more than 100 people annually. A similar outbreak happened in Ohio in 2014 when an unvaccinated Amish humanitarian aid worker returned with the disease and infected nearly 400 people. A year before that, northern Texas saw an outbreak when a man returned from Indonesia and infected more than 20 people at the Eagle Mountain International Church in Newark, an hour's drive from Dallas, including every single unvaccinated child who was exposed. Church leaders allowed a vaccination drive on site to contain the disease but had a history of preaching that God was the trusted source for healing.
Despite the endorsement of non-vaccination by public figures and celebrities, the national rate of vaccination has not dropped significantly since the Wakefield scandal. According to the CDC, there is a difference of only a couple of percentage points in years over the past decade and rates are still above the 90 percent threshold needed for herd immunity. In 2013, Texas had a 92.2 percent vaccination rate, better than 24 other states and up from 90.1 percent in 2006.
Pockets of vaccination resistance are not affecting us on a national or even a state level, but they are doing so on a community level. "High vaccination coverage levels at the national and state levels might mask clustering of unvaccinated children at local levels where vaccine-preventable diseases might be transmitted," the CDC said in a 2013 report. Just one unvaccinated person becoming exposed is enough to spread the disease among his or her like-minded friends and family and from there perhaps to people who can't be vaccinated for medical reasons -- hence the decision by Weir and other doctors to isolate the two populations from each other by segregating their clinics.
It wasn't just doctors who started this recent policy shift. Weir reported that even before she began trying to make her patient load 100 percent vaccinated, she and several colleagues had parents calling her asking if they would see unvaccinated children. Not because they didn't want to vaccinate their children but because they didn't want to expose their children and themselves to families who were anti-vaccination and would seek another doctor if they couldn't find a fully vaccinated practice.
"There was a groundswell of parents asking if we made all our patients vaccinate," says Weir. "They didn't want to deal with a doctor who didn't."
The risk of catching measles from an infected patient is very real. Measles is one of the most contagious diseases in the world. It is transmitted through respiratory droplets expelled by coughing, sneezing, talking or even just breathing, and it infects more than 90 percent of the unvaccinated people with whom it comes into contact. If you share a waiting room with someone who's infected, the very act of that person sitting anywhere near you can spread the virus. In addition, measles can survive for two hours on surfaces such as the elevator panel you touched to get to the floor the clinic is located on, the door handle that led you into the practice or the pen you used to sign in.
It's true that many practices maintain separate waiting areas for sick and well patients, and in the case of Weir's office, those waiting areas even have their own separate ventilation systems that make sure their airflows do not normally mingle. However, because of the nature of measles and how it can spread, this may not be enough. The hallmark of the disease is a distinctive rash that should be an impossible-to-miss sign a person is sick. Avoiding people with visible rashes is no guarantee, though. A sick person is contagious four days before the rash even appears while he or she is asymptomatic. It is perfectly possible for a child in for an annual checkup to be infected with measles, to be unaware of it and to play with another child in a waiting room for non-contagious patients.
Or consider the R in MMR, rubella. Like measles, it is highly contagious, but unlike measles, it is generally a milder disease. A rash and a low fever are all you have to deal with most of the time, and the vast majority of people who catch it recover just fine.
Except for pregnant women in their first trimester. For them, rubella is a nightmare in virus form that attacks their unborn children. In the rubella epidemic of the 1960s, America saw 2,100 neonatal deaths from the disease and more than 11,000 abortions. Some of the abortions were caused by the rubella itself, but others were sought voluntarily after the women learned of the dangers their babies faced from congenital rubella syndrome. Tens of thousands of the children who survived were born blind, deaf and/or mentally retarded.
And as with measles, simply avoiding people with rashes will not protect you. Half of those infected are completely asymptomatic. An unvaccinated person might be helpfully holding the clinic door open for a newly pregnant woman weathering morning sickness and be killing or maiming her child at the same time, completely oblivious of the fact.
When Weir started her vaccination policy, patiently explaining things of this nature as gently as she could became a major part of her initiative.
"I had my nurse pull all our files and go through them one by one to find out who needed to be caught up on their schedules," says Weir. "Then we had each person come in for a consultation so that we could try to convince them what needed to be done."
Some of the cases in which vaccinations weren't up to schedule were simply due to negligence. In others, parents who were worried about how many shots were to be given all at once had their children put on alternative schedules. Instead of getting four shots in one visit, the children would get a shot a month over the course of four visits.
"It still meets the medical guidelines," says Weir. "It just means more trips to the doctor. I have kids myself. I know it hurts watching them get all those shots at once. Spacing it out makes a lot of parents feel better and still gets vaccination done in the time prescribed."
Others needed more convincing because of misinformation they'd read online concerning autism and the side effects of vaccinations, or accurate information they'd read but did not understand, such as the harmful-sounding ingredients in vaccines, like formaldehyde.
"It was a little weird sometimes," says Weir. "I had patients that could rattle off an entire list of ingredients in a vaccine, and yet when I questioned them about what each one did and how it affected the body, they didn't really know. It was just this kind of fear. Fear of additives or bad reactions. One patient told me she'd read that 10 percent of all children who were vaccinated died from it. Ten percent! That's just an insane number."
In all, Weir herself had about ten patients who held out against vaccination. She invited them to tell her which articles and sources had given them concerns. Weir would then print those articles out and go over them line by line with the patients, explaining and debunking bad or false data.
Dr. Nathan Carlin says doctors are supposed to talk with patients and refer them to other doctors rather than "fire" them.
Photo by Violeta Alvarez
The explanation process is a big part of what keeps the policy within the guidelines of medical ethics. Dr. Nathan Carlin, who for six years has been an associate professor at the McGovern Center for Humanities & Ethics at The University of Texas Health Science Center at Houston, says there's a right way a doctor should go about doing what Weir and her colleagues are doing with vaccination policies.
"The American Academy of Pediatrics recommends that doctors do not dismiss patients," says Carlin. "You're supposed to keep having conversations to try and change their minds. You're not supposed to 'fire' them, but refer them to another practice if you can't convince them. The main ethical issue there is that you want people to stay connected to the med profession so they don't get really angry at doctors and just forgo medicine altogether."
Weir remains within ethical guidelines even when turning away new patients. As a doctor, she is legally obliged to treat someone only if that person is in an emergency situation. When new patients are introduced at her office, they are informed of the vaccination policy. For those who are non-vaccinating, Weir will generally spend a month or two talking with them and addressing their concerns. Thus far she has been able to convince every single vaccination detractor she's come into professional contact with to see the benefit of vaccination.
"I can understand the fear," says Weir. "The medical literature can be dense and intimidating, but if I'm a doctor sitting there explaining it to them, they are more willing to listen and weigh it against what they've read online. It can be hard to pull people out of this labyrinth."
Others, like her coworker who ended up in the unresolved shouting match against the oncologist, are not as successful and end up losing patients to doctors who don't insist on a vaccination regimen.
"There seem to be two types of parents opposed to vaccination," says Weir. "Most just want their baby to be okay, but there are a small group of them who say that but they aren't really concerned with that. They are more interested in proving their conspiracy theory right. And there's nothing we can do about that. It's illegal for a doctor to treat a child against a parent's wishes, even if the child asks for it. So it becomes generational, and you end up with another small tribe of people who don't want to vaccinate."
Carlin sees the ethical reason for creating a 100 percent vaccinated environment for patients.
"You could be putting other patients at risk in the waiting room," he says. "The MMR isn't recommended in most cases until a child is 12 months old. So if you have a two-year-old with the measles and a six-month-old that is too young for the shot, it becomes unfair to the infant. I think parents have a reason to be upset about that. And you have adults with autoimmune disorders who could really suffer from all sorts of diseases that spread and can be prevented."
A family that falls into both categories lives in League City. Jennifer Coppock has a grocery list of such disorders in addition to a severe food allergy. Coppock has been diagnosed with, in no particular order, lupus, rheumatoid arthritis, antiphospholipid antibody syndrome (an autoimmune disease that causes severe blood clots) and chronic fatigue syndrome.
"At one point, it gets a little ludicrous naming everything I have," laughs Coppock.
As a child she was fully vaccinated, and she never had a single problem with vaccines until she became pregnant. A booster shot gave her a slight reaction but nothing major. After her pregnancy, though, she went in for a routine flu shot, and her system went, in her words, completely screwy.
The flu shot left her with Bell's palsy, a disorder that causes partial facial paralysis. She was also stricken with an eight-month case of vertigo that was so severe she couldn't even ride in a car. Thankfully both cleared up, but her doctor advised her not to get flu shots in the future unless a particularly dangerous or deadly strain was going around. Given her autoimmune problems, every flu season poses a hard choice.
"For other people, it's a cold they get over and move on from," says Coppock. "For me, it's three months with my system on fire."
Coppock's ten-year-old daughter, Emma, has not inherited the genetic markers that would indicate she would share her mother's various conditions. However, Coppock has passed her food allergies on to her daughter and they, too, have taken vaccination off the table for the girl thanks to a terrible reaction she experienced.
When she was nine, Emma played catch-up with a couple of vaccines she had missed as well as a flu shot. After her doctor's visit, she ended up homebound for nine straight months, being prescribed adult-strength Dramamine until she got better. Since the family's physician was unable to determine which vaccination Emma had reacted badly to, it was decided that the girl should probably forgo any more.
"Our doctor said there hadn't been a measles outbreak in years and that we were probably safe," Coppock says.
Emma's allergy problems make homeschooling a better option than public schooling, and both Coppock and her daughter regularly interact with other homeschooling parents in the area through co-opts and group trips.
"There's been a huge growth in the homeschool community of secular people, which is good because before that, it was more majority crazy religious people," says Coppock. "But there are a lot of anti-vaxxers in the secular group, too. These are people who just by homeschooling in the first place kind of go against the grain and don't like to be told what to do. Bucking the trend and seeking 'natural cures' becomes a social norm. I don't know if it's general mistrust of the government or Western medicine, but they definitely believe that vaccination is a way of subduing the people."
According to U.S. Department of Education regulations, "Texas does not regulate, monitor, approve, register, or accredit programs available to parents who choose to homeschool their children." So hard numbers are difficult to come by concerning vaccination rates in homeschool environments. In 2005, there was a major outbreak of measles in Indiana that infected more than 500 people. The New England Journal of Medicine reported that 71 percent of school-age patients were unvaccinated homeschool children even though homeschoolers make up only 1 percent of Indiana's school-age population. Homeschoolers also made up the majority of measles cases in 2008 outbreaks in Chicago and in Grant County in Washington state. A USA Today article on the Indiana outbreaks interviewed many parents who specifically said that their decision not to have their children vaccinated was based at least partly on the desire not to be forced to vaccinate as public school requires.
Not that you have to try all that hard in Texas if you don't want to vaccinate your child in order to send him or her to public school. In 2003, Rick Perry signed into law a bill that expanded the exemptions for vaccination to include "reasons of conscience." Previously, the only conscientious objection allowed was that vaccination "conflicts with the tenets and practice of a recognized church or religious denomination of which the applicant is an adherent or a member." Under current guidelines, parents can object for any reason they like and are required only to submit a written affidavit to the school that needs to be re--submitted every two years. The only penalty is that an unvaccinated child may be barred from school during an outbreak. We are one of 17 states that permit both religious and philosophical objections. Just two, Mississippi and West Virginia, allow only medical exemptions.
"I think it's unfortunate from a medical standpoint," says Carlin. "They've added the language 'philosophical objection.' I think that's a reference to the philosophy of parenting. They don't believe in science, and want to do what they think is best for their child."
Carlin has a term for parents who avoid vaccinations purely on philosophical grounds: freeloaders. It works like this: Say you have a group of 100 people and they all take a vaccine, but the vaccine does have some minor risk. The first 99 people get that vaccine, but the last person reasons that since everyone else has now been vaccinated and is not carrying the disease, he or she is no longer in danger and has no reason to risk the vaccine at all. That's freeloading.
"That's viewed as unethical because you are getting the benefit with none of the cost," says Carlin. "People are choosing not to vaccinate, and their reason is that they will be okay because they are freeloading. It's unfortunate. We're on the verge of eradicating a lot of these diseases. No one needs to get measles or polio anymore, but they can come back."
Because of the recent outbreaks, Jennifer Coppock is carefully deciding whether or not to risk the MMR for Emma. It's a choice between a potentially fatal disease or months of possible debilitating side effects. Three years ago, the choice was easier, but as cases continue to spread from California to other states, it's more and more probable that Emma may need the shot.
"In a perfect world, everyone would vaccinate but us, which would be selfish," says Coppock.
There is some indication that the backlash against voluntary vaccination is now coming not only from concerned parents and a few doctors speaking in anonymity but also from government. Earlier this year, state Rep. Jason Villalba, R-Dallas, filed a bill seeking to once again tighten the restrictions on vaccination exemptions for Texas public schools. His bill would eliminate not only the philosophical objection but the religious one as well, bringing this state more into line with Mississippi and West Virginia.
"We are just saying, 'Look, if you are going to send your children to public schools, they need to be vaccinated,'" he told the Texas Tribune. "We are going to ask that you keep other children safe."
Carlin is also of the opinion that it's time for the exemptions allowed for vaccines to be given another look. According to him, there is no solid objection to vaccination in any major world religion, not in Christianity, Islam, Judaism, Buddhism or any other major sect. He points out that even Mary Baker Eddy, the founder of the famously anti-medicine Christian Science movement, recommended complying with state-mandated vaccinations as a matter of law and praying against possible harm from them. She had her own grandchildren vaccinated.
Although the American Academy of Pediatrics still recommends working with non-vaccinating patients above all else, Carlin thinks the ethics are shifting.
"The interesting thing about ethics is that it's not about rules that are true for all time," he says. "Often they have an empirical component. We've seen more pediatricians taking the refusal position, and if it keeps rising, the ethics will change."
For Weir, it's partially a matter of choice. If parents have a choice not to vaccinate, then parents should also have a choice to avoid the unvaccinated in whatever way they reasonably can.
"They're telling doctors, 'I'm being the responsible patient. You accepting non-vaccinating patients risks exposure in your waiting room. Why are you putting my child in danger?'" says Weir. "I think a lot of doctors simply haven't considered the question, and I think a lot of parents don't even know that they have the right to ask. You do, though. Ask!"
Coppock remains grateful for the ability to opt herself and her daughter out of vaccinations for medical reasons.
"I think people should have the right to not vaccinate," she says. "If you forced me to, it could kill me. You should be able to opt out, but maybe they should make you have to watch a film about what life was like when measles was more common first. It should be an informed decision."
Since the rise of the anti-vaccination movement, everyone from UTMB to The Scientist has lamented that vaccines are a victim of their own success. Having virtually eliminated many diseases that were once nationwide epidemics that claimed many lives, they have also eliminated the memory of what it was like before vaccination existed.
"Children are so safe now, and because of that, worried parents grab onto the small possibility of a bad reaction to a vaccine to assert control in a world where they often feel they have none against danger," says Weir. "It's important for them to know they can assert that control without not vaccinating."
*Correction 1/19/15: The original version of this story misstated the name of the group that conducted the survey of pediatricians and the number of clients it serves.