Anorexia nervosa, neurobiology, and family-based treatment

Via Wikimedia Commons
Photo credit: Sandra Mann
By Harriet Brown, DXS contributor

Back in 1978, psychoanalyst Hilde Bruch published the first popular book on anorexia nervosa. In The Golden Cage, she described anorexia as a psychological illness caused by environmental factors: sexual abuse, over-controlling parents, fears about growing up, and/or other psychodynamic factors. Bruch believed young patients needed to be separated from their families (a concept that became known as a “parentectomy”) so therapists could help them work through the root issues underlying the illness. Then, and only then, patients would choose to resume eating. If they were still alive.

Bruch’s observations dictated eating-disorders treatments for decades, treatments that led to spectacularly ineffective results. Only about 35% of people with anorexia recovered; another 20% died, of starvation or suicide; and the rest lived with some level of chronic illness for the rest of their lives.

Not a great track record, overall, and especially devastating for women, who suffer from anorexia at a rate of 10 times that of men. Luckily, we know a lot more about anorexia and other eating disorders now than we did in 1978.

“It’s Not About the Food”

In Bruch’s day, anorexia wasn’t the only illness attributed to faulty parenting and/or trauma. Therapists saw depression, anxiety, schizophrenia, eating disorders, and homosexuality (long considered a psychiatric “illness”) as ailments of the mind alone. Thanks to the rising field of behavioral neuroscience, we’ve begun to untangle the ways brain circuitry, neural architecture, and other biological processes contribute to these disorders. Most experts now agree that depression and anxiety can be caused by, say, neurotransmitter imbalances as much as unresolved emotional conflicts, and treat them accordingly. But the field of eating-disorders treatment has been slow to jump on the neurobiology bandwagon. When my daughter was diagnosed with anorexia in 2005, for instance, we were told to find her a therapist and try to get our daughter to eat “without being the food police,” because, as one therapist informed us, “It’s not about the food.”

Actually, it is about the food. Especially when you’re starving.

Ancel Keys’ 1950 Semi-Starvation Study tracked the effects of starvation and subsequent re-feeding on 36 healthy young men, all conscientious objectors who volunteered for the experiment. Keys was drawn to the subject during World War II, when millions in war-torn Europe – especially those in concentration camps – starved for years. One of Keys’ most interesting findings was that starvation itself, followed by re-feeding after a period of prolonged starvation, produced both physical and psychological symptoms, including depression, preoccupation with weight and body image, anxiety, and obsessions with food, eating, and cooking—all symptoms we now associate with anorexia. Re-feeding the volunteers eventuallyreversed most of the symptoms. However, this approach proved to be difficult on a psychological level, and in some ways more difficult than the starvation period. These results were a clear illustration of just how profound the effects of months of starvation were on the body and mind.

Alas, Keys’ findings were pretty much ignored by the field of eating-disorders treatment for 40-some years, until new technologies like functional magnetic resonance imaging (fMRI) and research gave new context to his work. We now know there is no single root cause for eating disorders. They’re what researchers call multi-factorial, triggered by a perfect storm of factors that probably differs for each person who develops an eating disorder. “Personality characteristics, the environment you live in, your genetic makeup—it’s like a cake recipe,” says Daniel le Grange, Ph.D., director of the Eating Disorders Program at the University of Chicago. “All the ingredients have to be there for that person to develop anorexia.”

One of those ingredients is genetics. Twenty years ago, the Price Foundation sponsored a project that collected DNA samples from thousands of people with eating disorders, their families, and control participants. That data, along with information from the 2006 Swedish Twin Study, suggests that anorexia is highly heritable. “Genes play a substantial role in liability to this illness,” says Cindy Bulik, Ph.D., a professor of psychiatry and director of the University of North Carolina’s Eating Disorders Program. And while no one has yet found a specific anorexia gene, researchers are focusing on an area of chromosome 1 that shows important gene linkages.

Certain personality traits associated with anorexia are probably heritable as well. “Anxiety, inhibition, obsessionality, and perfectionism seem to be present in families of people with an eating disorder,” explains Walter Kaye, M.D., who directs the Eating Disorders Treatment and Research Program at the University of California-San Diego. Another ingredient is neurobiology—literally, the way your brain is structured and how it works. Dr. Kaye’s team at UCSD uses fMRI technology to map blood flow in people’s brains as they think of or perform a task. In one study, Kaye and his colleagues looked at the brains of people with anorexia, people recovered from anorexia, and people who’d never had an eating disorder as they played a gambling game. Participants were asked to guess a number and were rewarded for correct guesses with money or “punished” for incorrect or no guesses by losing money.

Participants in the control group responded to wins and losses by “living in the moment,” wrote researchers: “That is, they made a guess and then moved on to the next task.” But people with anorexia, as well as people who’d recovered from anorexia, showed greater blood flow to the dorsal caudate, an area of the brain that helps link actions and their outcomes, as well as differences in their brains’ dopamine pathways. “People with anorexia nervosa do not live in the moment,” concluded Kaye. “They tend to have exaggerated and obsessive worry about the consequences of their behaviors, looking for rules when there are none, and they are overly concerned about making mistakes.” This study was the first to show altered pathways in the brain even in those recovered from anorexia, suggesting that inherent differences in the brain’s architecture and signaling systems help trigger the illness in the first place.

Food Is Medicine

Some of the best news to come out of research on anorexia is a new therapy aimed at kids and teens. Family-based treatment (FBT), also known as the Maudsley approach, was developed at the Maudsley Hospital in London by Ivan Eisler and Christopher Dare, family therapists who watched nurses on the inpatient eating-disorders unit get patients to eat by sitting with them, talking to them, rubbing their backs, and supporting them. Eisler and Dare wondered how that kind of effective encouragement could be used outside the hospital.

Their observations led them to develop family-based treatment, or FBT, a three-phase treatment for teens and young adults that sidesteps the debate on etiology and focuses instead on recovery. “FBT is agnostic on cause,” says Dr. Le Grange. During phase one, families (usually parents) take charge of a child’s eating, with a goal of fully restoring weight (rather than get to the “90 percent of ideal body weight” many programs use as a benchmark). In phase two, families gradually transfer responsibility for eating back to the teen. Phase three addresses other problems or issues related to normal adolescent development, if there are any.

FBT is a pragmatic approach that recognizes that while people with anorexia are in the throes of acute malnourishment, they can’t choose to eat. And that represents one of the biggest shifts in thinking about eating disorders. The DSM-IV, the most recent “bible” of psychiatric treatment, lists as the first symptom of anorexia “a refusal to maintain body weight at or above a minimally normal weight for age and height.” That notion of refusal is key to how anorexia has been seen, and treated, in the past: as a refusal to eat or gain weight. An acting out. A choice. Which makes sense within the psychodynamic model of cause.

But it doesn’t jibe with the research, which suggests that anorexia is more of an inability to eat than a refusal. Forty-five years ago, Aryeh Routtenberg, then (and still) a professor of psychology at Northwestern University, discovered that when he gave rats only brief daily access to food but let them run as much as they wanted on wheels, they would gradually eat less and less, and run more and more. In fact, they would run without eating until they died, a paradigm Routtenberg called activity-based anorexia (ABA). Rats with ABA seemed to be in the grip of a profound physiological imbalance, one that overrode the normal biological imperatives of hunger and self-preservation. ABA in rats suggests that however it starts, once the cycle of restricting and/or compulsive exercising passes a certain threshold, it takes on a life of its own. Self-starvation is no longer (if it ever was) a choice, but a compulsion to the death.

That’s part of the thinking in FBT. Food is the best medicine for people with anorexia, but they can’t choose to eat. They need someone else to make that choice for them. Therapists don’t sit at the table with patients, but parents do. And parents love and know their children. Like the nurses at the Maudsley Hospital, they find ways to get kids to eat. In a sense, what parents do is outshout the anorexia “voice” many sufferers report hearing, a voice in their heads that tells them not to eat and berates them when they do. Parents take the responsibility for making the choice to eat away from the sufferer, who may insist she’s choosing not to eat but who, underneath the illness, is terrified and hungry.

The best aspect of FBT is that it works. Not for everyone, but for the majority of kids and teens. Several randomized controlled studies of FBT and “treatment as usual” (talk therapy without pressure to eat) show recovery rates of 80 to 90 percent with FBT—a huge improvement over previous recovery rates. A study at the University of Chicago is looking at adapting the treatment for young adults; early results are promising.

The most challenging aspect of FBT is that it’s hard to find. Relatively few therapists in the U.S. are trained in the approach. When our daughter got sick, my husband and I couldn’t find a local FBT therapist. So we cobbled together a team that included our pediatrician, a therapist, and lots of friends who supported our family through the grueling work of re-feeding our daughter. Today she’s a healthy college student with friends, a boyfriend, career goals, and a good relationship with us.

A few years ago, Dr. Le Grange and his research partner, Dr. James Lock of Stanford, created a training institute that certifies a handful of FBT therapists each year. (For a list of FBT providers, visit the Maudsley Parents website.) It’s a start. But therapists are notoriously slow to adopt new treatments, and FBT is no exception. Some therapists find FBT controversial because it upends the conventional view of eating disorders and treatments. Some cling to the psychodynamic view of eating disorders despite the lack of evidence. Still, many in the field have at least heard of FBT and Kaye’s neurobiological findings, even if they don’t believe in them yet.

Change comes slowly. But it comes.

* * *

Harriet Brown teaches magazine journalism at the S.I. Newhouse School of Public Communications in Syracuse, New York. Her latest book is Brave Girl Eating: A Family’s Struggle with Anorexia (William Morrow, 2010).

be there for that person to develop anorexia.”

One of those ingredients is genetics. Twenty years ago, the Price Foundation sponsored a project that collected DNA samples from thousands of people with eating disorders, their families, and control participants. That data, along with information from the 2006 Swedish Twin Study, suggests that anorexia is highly heritable. “Genes play a substantial role in liability to this illness,” says Cindy Bulik, Ph.D., a professor of psychiatry and director of the University of North Carolina’s Eating Disorders Program. And while no one has yet found a specific anorexia gene, researchers are focusing on an area of chromosome 1 that shows important gene linkages.
Certain personality traits associated with anorexia are probably heritable as well. “Anxiety, inhibition, obsessionality, and perfectionism seem to be present in families of people with an eating disorder,” explains Walter Kaye, M.D., who directs the Eating Disorders Treatment and Research Program at the University of California-San Diego. Another ingredient is neurobiology—literally, the way your brain is structured and how it works. Dr. Kaye’s team at UCSD uses fMRI technology to map blood flow in people’s brains as they think of or perform a task. In one study, Kaye and his colleagues looked at the brains of people with anorexia, people recovered from anorexia, and people who’d never had an eating disorder as they played a gambling game. Participants were asked to guess a number and were rewarded for correct guesses with money or “punished” for incorrect or no guesses by losing money.
Participants in the control group responded to wins and losses by “living in the moment,” wrote researchers: “That is, they made a guess and then moved on to the next task.” But people with anorexia, as well as people who’d recovered from anorexia, showed greater blood flow to the dorsal caudate, an area of the brain that helps link actions and their outcomes, as well as differences in their brains’ dopamine pathways. “People with anorexia nervosa do not live in the moment,” concluded Kaye. “They tend to have exaggerated and obsessive worry about the consequences of their behaviors, looking for rules when there are none, and they are overly concerned about making mistakes.” This study was the first to show altered pathways in the brain even in those recovered from anorexia, suggesting that inherent differences in the brain’s architecture and signaling systems help trigger the illness in the first place.
Food Is Medicine
Some of the best news to come out of research on anorexia is a new therapy aimed at kids and teens. Family-based treatment (FBT), also known as the Maudsley approach, was developed at the Maudsley Hospital in London by Ivan Eisler and Christopher Dare, family therapists who watched nurses on the inpatient eating-disorders unit get patients to eat by sitting with them, talking to them, rubbing their backs, and supporting them. Eisler and Dare wondered how that kind of effective encouragement could be used outside the hospital.
Their observations led them to develop family-based treatment, or FBT, a three-phase treatment for teens and young adults that sidesteps the debate on etiology and focuses instead on recovery. “FBT is agnostic on cause,” says Dr. Le Grange. During phase one, families (usually parents) take charge of a child’s eating, with a goal of fully restoring weight (rather than get to the “90 percent of ideal body weight” many programs use as a benchmark). In phase two, families gradually transfer responsibility for eating back to the teen. Phase three addresses other problems or issues related to normal adolescent development, if there are any.
FBT is a pragmatic approach that recognizes that while people with anorexia are in the throes of acute malnourishment, they can’t choose to eat. And that represents one of the biggest shifts in thinking about eating disorders. The DSM-IV, the most recent “bible” of psychiatric treatment, lists as the first symptom of anorexia “a refusal to maintain body weight at or above a minimally normal weight for age and height.” That notion of refusal is key to how anorexia has been seen, and treated, in the past: as a refusal to eat or gain weight. An acting out. A choice. Which makes sense within the psychodynamic model of cause.
But it doesn’t jibe with the research, which suggests that anorexia is more of an inability to eat than a refusal. Forty-five years ago, Aryeh Routtenberg, then (and still) a professor of psychology at Northwestern University, discovered that when he gave rats only brief daily access to food but let them run as much as they wanted on wheels, they would gradually eat less and less, and run more and more. In fact, they would run without eating until they died, a paradigm Routtenberg called activity-based anorexia (ABA). Rats with ABA seemed to be in the grip of a profound physiological imbalance, one that overrode the normal biological imperatives of hunger and self-preservation. ABA in rats suggests that however it starts, once the cycle of restricting and/or compulsive exercising passes a certain threshold, it takes on a life of its own. Self-starvation is no longer (if it ever was) a choice, but a compulsion to the death.
That’s part of the thinking in FBT. Food is the best medicine for people with anorexia, but they can’t choose to eat. They need someone else to make that choice for them. Therapists don’t sit at the table with patients, but parents do. And parents love and know their children. Like the nurses at the Maudsley Hospital, they find ways to get kids to eat. In a sense, what parents do is outshout the anorexia “voice” many sufferers report hearing, a voice in their heads that tells them not to eat and berates them when they do. Parents take the responsibility for making the choice to eat away from the sufferer, who may insist she’s choosing not to eat but who, underneath the illness, is terrified and hungry.
The best aspect of FBT is that it works. Not for everyone, but for the majority of kids and teens. Several randomized controlled studies of FBT and “treatment as usual” (talk therapy without pressure to eat) show recovery rates of 80 to 90 percent with FBT—a huge improvement over previous recovery rates. A study at the University of Chicago is looking at adapting the treatment for young adults; early results are promising.
The most challenging aspect of FBT is that it’s hard to find. Relatively few therapists in the U.S. are trained in the approach. When our daughter got sick, my husband and I couldn’t find a local FBT therapist. So we cobbled together a team that included our pediatrician, a therapist, and lots of friends who supported our family through the grueling work of re-feeding our daughter. Today she’s a healthy college student with friends, a boyfriend, career goals, and a good relationship with us.
A few years ago, Dr. Le Grange and his research partner, Dr. James Lock of Stanford, created a training institute that certifies a handful of FBT therapists each year. (For a list of FBT providers, visit the Maudsley Parents website.) It’s a start. But therapists are notoriously slow to adopt new treatments, and FBT is no exception. Some therapists find FBT controversial because it upends the conventional view of eating disorders and treatments. Some cling to the psychodynamic view of eating disorders despite the lack of evidence. Still, many in the field have at least heard of FBT and Kaye’s neurobiological findings, even if they don’t believe in them yet.
Change comes slowly. But it comes.
* * *
Harriet Brown teaches magazine journalism at the S.I. Newhouse School of Public Communications in Syracuse, New York. Her latest book is Brave Girl Eating: A Family’s Struggle with Anorexia (William Morrow, 2010).

Vaccination attitudes are contagious

The power of social ties may be stronger than you think.

by Tara Haelle Continue reading

Vaccine fears: What can you do?

An infant girl suffering from pertussis, a vaccine-preventable disease,
struggles to breathe. Those indentations in her ribs are
one of the signs of her extreme difficulty drawing breath. Via CDC. 

What’s not to fear directly about vaccines? There’s a needle that someone pokes into your child. Your child screams. You tense up. What’s in there? you wonder. Viral or bacterial bits that, in ways that are mysterious to a non-immunologist, will keep your child well when intuition seems to say they ought to make your child sick.
Needles, screaming, microbial bits…these naturally would make any parent blanch. The number of vaccines has added to the fear for at least a decade, leading to non–evidence-based calls to “spread out” the schedule or reduce the number of vaccinations.
In fact, the evidence supports the schedule as it’s recommended.
The fear of vaccination is not new. Since Edward Jenner and his cowpox inoculation at the turn of the 19th century, people have latched onto the fear of the known—those needles!—and unknown—what’s in those things?
What might be considered the first anti-vaccine cartoon appeared in response to Jenner’s proposed inoculation of cowpox to combat smallpox.
The vision of cows growing out of arms is comical, but the reality of possible side effects from today’s vaccines can lead some parents to keep their children away from the doctor’s office. Indeed, this anxiety has done so since the days of the 19th century anti-vaccination leagues, aligned against the widespread use of Jenner’s smallpox vaccine.
The vaccine wars in those days were just as bitter and divisive as they are today, including an 1885 march in England in which anti-vaccination forces carried a child’s coffin and an effigy of Jenner himself. Today’s most fanatical crusaders against vaccines may not carry coffins or effigies, but death threats against those who promote vaccines for public health are not unknown.
The fact that the vast majority of parents overcame those fears and had their children vaccinated has led to some of the greatest public health successes of the 20th century. Thanks to the willingness of people to participate in vaccination programs, smallpox disappeared and polio became a thing of the past in much of the world. Indeed, people in those eras knew, often from personal experience, what these diseases could do—maim and kill—and the fear of those very real outcomes outweighed fears of the vaccinations.
But today, we’re different. In the United States, most of us under a certain age have never witnessed a death from diphtheria or tetanus or smallpox or measles. We haven’t seen a child drained of life as a rotavirus rapidly depletes the molecules she needs to live. Many of us have not witnessed the sounds of pertussis, the vomiting, the exploding lungs in an agony of infant death. Why? Because of vaccines.
This very success has, ironically, led to the resurgence of fear and misgiving about vaccines. No longer weighed against anxiety of death or disability from disease, the fear of vaccines now aligns against the bright picture of a nation of children largely free of life-threatening illness.
Without the collective memory of days when children played on the playground one day and died the next of vaccine-preventable disease, the calculus of parental fear pits only the side effects of vaccines against the healthy child. Vaccination requires intentional agency—parental agreement—to impose on that healthy child the very small risk that vaccines carry. Some parents simply are not comfortable either with that intentionality or that risk.
Feeding this reluctance is the explosion of Internet sites that warn against vaccines or disseminate incorrect information about them. The Centers for Disease Control and Prevention (CDC) has provided abundant information about vaccines, including a page devoted to countering erroneous information with facts.
This information will not move the fiercest anti-vaccine groups that lump the CDC in with pharmaceutical companies and others in an alleged conspiracy to harm millions via a money-making vaccine industry. However, it certainly helps concerned parents who simply seek to calm fears, weigh evidence, and make an informed decision about choosing vaccines over the life-threatening illness and compromised public health that result when people don’t vaccinate.
Indeed, these threats to public health have grown considerably with recent large outbreaks of measles and pertussis, including a growing measles outbreak in Europe involving more than 26,000 cases of measles, more than 7000 hospitalizations, and nine deaths as of this writing. The growing threat has led to calls for more stringent requirements for childhood vaccines, including dropping exemptions and requiring that all children be vaccinated over parental objections. This tactic likely would increase vaccination rates among children attending school.
But instead of strong-arming parents into having their children vaccinated, what we really need is a two-fold approach to education. First, we need sober, non-sensationalist reporting from the news media about vaccine-related stories, including stories about side effects, research, and court cases. These articles—and their sensational headlines—are in all likelihood among the prime drivers of the rumor mill against vaccines.
Second, when parents read these stories and turn to a medical professional for input, that input must come as part of a two-way communication between the health professional and the parent, not in lecture format or as patronizing. A little, “I understand your concerns because I’ve had them, too, but here’s what I know that gives me confidence in vaccines,” is considerably better than, “Your child has to be vaccinated, or you can get out of my office.” The onus is on parents to ask with open minds and an understanding that the medical professional in front of them has likely devoted considerable time to gaining the education and expertise necessary to address their questions. Health care isn’t a competition about who knows more. It’s about evidence-based health practices.
As centuries of history attest, no efforts will completely eradicate vaccine fears. Motivations fueling anti-vaccine sentiment that go beyond information gaps range from personal economic benefit to a desire to out-expert the experts to the inertia of fear.
But a careful and persistent information campaign and outreach efforts from medical professionals in the trenches may help keep vaccination rates sufficiently high. Parental investment in gaining information from trained professionals and making decisions based on facts rather than fear is also an indispensable component. To ensure adequate rates requires either these efforts or a resurgence of the deadly diseases that have graphically demonstrated the real balance of the threats at issue here.
Which one would we rather have? 


Emily Willingham, Double X Science Editor
Twitter,
@ejwillingham
————————————————————————

A version of this post originally appeared on the blog of PKIDs, Parents of Kids with Infectious Diseases. The mission of PKIDs includes educating the public about infectious diseases and methods of prevention and transmission. Follow PKIDs on Twitter @PKIDs.

Pertussis: Get the vax or at least listen to why you should

by Tara Haelle, DXS contributor

The past few weeks have seen big news for vaccines. A bill related to vaccine exemptions was signed into law, a court ruled against a parent’s refusal to vaccinate and a recent study points out the value of vaccinating a household — especially mom — to protect a young infant from pertussis (whooping cough).


The latest news is that Governor Jerry Brown in California signed a bill last Sunday that had been sitting on his desk since September 6 and was the target of a number of rallies by parents who didn’t want to see it pass. Among those fighting the bill was Dr. Bob Sears, who says he walks a middle ground with vaccine policy but in reality tends to flirt with those who fear vaccines and rely on misinformation. Although some parents claimed the bill took away their right to choose whether their children get vaccinated, it actually just ensures they get good medical information before they make that choice.

Photo by Dave Gostisha at sxc.hu.
The bill-now-law, AB 2109, proposed by a pediatrician, requires parents to get a statement signed by a health care practitioner that the parents/guardians have received accurate, evidence-based information about the risks and benefits of vaccines before they can use a personal belief exemption to prevent their children from being vaccinated. This law is a tremendous triumph both for informed consent in medical decisions and for the public health of children in California, which saw a considerable outbreak of pertussis (whooping cough) in 2010. Washington state passed a similar law last year and saw 25 percent drop in exemptions filed. Other states are considering similar laws in a nationwide overall shift toward strengthening exemption requirements.


Why are these laws so important? In short, they kill two birds with one stone: They make it more difficult for parents to casually opt out of vaccines on philosophical grounds (as opposed to religious or medical reasons), and they require parents who want to opt out to at least hear out a pediatrician on accurate information about the actual risks (which do exist) and benefits (there are so many) of immunizations. Parents who are determined not to vaccinate their children can still refuse, but many parents who might have signed those forms out of convenience — it can be easier to sign than to get to the doctor’s office for the shot — will now at least hear the impact a decision not to vaccinate can have on the community. (Hopefully, they go to a health care practitioner other than Dr. Sears, whose stances have gradually been moving further and further toward unscientific and misinformation of those who oppose vaccines.) 

It’s also particularly notable that California and Washington are the most recent states to tighten opt-out procedures for parents because they are home to some of the more recent pertussis outbreaks. More on that in a moment.

First, a bit of background on vaccine exemptions: Only 20 states have personal belief exemptions, and until last year, eight of these simply require nothing more than a parent signature. Now that number is down to six. (Other types of requirements for philosophical exemptions include writing out your reasons for exemption, requiring the forms to be notarized, requiring education on the risks/benefits, direct involvement from the state or local health department or renewals.)


All states have medical exemptions for patients who have auto-immune disorders, have proof that their bodies do not respond to immunization, have documented allergic reactions or have other circumstances which make it too risky for them to be immunized. In fact, these are the very people that the rest of the population protects through herd immunity when vaccination rates are up where they should be. All but two states have religious exemptions (Mississippi and West Virginia are the exceptions).


And that brings us to some less covered but still significant news about one state’s ruling on a particular case involving religious exemption. Last week, the U.S. district court in Ohio ruled that one woman’s claim of religious objection was insufficient for her children to be exempted from being vaccinated. Read the whole story here. To be fair, this is a complex case involving far more than vaccines; the mother is clearly neglectful and the overall situation is pretty crappy. However, the fact that the court found “the mere assertion of a religious belief … does not automatically trigger First Amendment protections,” and that “it has long been recognized that local authorities may constitutionally mandate vaccinations” is significant in a state that offers both religious and personal belief exemptions.


Because of the danger to public health when clusters of kids are not vaccinated, my personal opinion on this issue is that “personal belief” exemptions should not be offered in any state, and religious exemptions should be extremely difficult to get, if they are offered at all (which may be the best overall route). Some cite the Amish, Mennonite and Christian Scientists, though actually the majority of Amish children, at least, are vaccinated, and it doesn’t appear that any Amish objections to vaccines are for religious reasons. Christian Scientists have successfully been convicted of neglect in other incidents where their children died from inadequate medical care, though their religion is the only one I’m aware of that vaccination actually, explicitly violates. 

The constitutionality of religious exemptions is dubious as well. At the very least, however, anyone seeking any exemption should certainly to see a doctor first to be sure they have accurate information and not simply what they have seen online or heard at the playground. Those who absolutely will not vaccinate in states without exemptions may also opt to home school or send their children to private schools that don’t have requirements. But considering the increasing rates of measles and the increasing epidemics of pertussis, the need for high vaccination coverage in communities is more important than ever.

It is true that the pertussis vaccine is not as effective as the old one used to be, something I wrote about a few weeks ago.  It’s also true that pertussis peaks every five years or so, but even taking into account the peaks, the overall rate of cases has been steadily on the move upward. Dr. Offit, the chief of the Division of Infectious Disease at Children’s Hospital of Philadelphia and a very vocal advocate of vaccines, said he believes that parents’ refusals to vaccinate are playing their own small part in the increase.


“The major contributor is waning immunity. The minor contributor is the choice not vaccinate,” he said. He noted that there are researchers working on the problem, as this Nature article notes (paywall), including attempts to make a better vaccine with more adjuvants, the additives that enhance the body’s immune response to a vaccine. While vaccinated children and adults have been high among the numbers of those getting whooping cough, getting the vaccine remains among the best ways to reduce your risk of contracting it — or of having less rough of a time with it if you do get it. Dr. Offit also pointed out that pregnant women in particular should be sure they get their booster.


Which brings us to the study published last week that relates to the most important reason to get vaccinated, at least from the perspective of preventing deaths — to protect the babies who are too young for the vaccine but most likely to contract it and die from it.

The study, published in the journal Epidemiology last week, looked at how frequently pertussis was transmitted to others within the same household and how effective “cocooning” is. Cocooning is vaccinating all the household members who can get the vaccine for the purpose of protecting young babies who can’t yet be vaccinated for the disease.


They found that transmission rates within the home are high, especially for mothers passing the illness on to their children. Therefore, making sure all pregnant women are vaccinated before their baby arrives would, according to their calculations, cut the risk in half that a baby would contract pertussis. The evidence for sibling vaccination, though weaker, still points to the value of overall cocooning: “Vaccination of siblings is less effective in preventing transmission within the household, but may be as effective overall because siblings more often introduce an infection in the household.”


Indeed, this year, siblings’ bringing home the disease appears more likely than ever in the states experiencing big outbreaks this year. Just how bad are the numbers? Well, 2010 was the last five-year peak, which totaled 27,550 cases. It’s currently September of 2012, and the numbers last reported to the CDC were at 29,834, and that doesn’t even include over 3,700 cases in Minnesota that haven’t been officially reported to the CDC yet. These numbers, which include 14 deaths (primarily of babies under 3 months), may very well end up doubling the 2011 total of 18,719 if they continue at the current rate through the end of the year. It’s the biggest pertussis outbreak since 1959.


Not surprisingly, the majority of the states leading in pertussis cases are also among those that offer personal belief exemptions. Washington, despite their new law, is sitting at 4,190 cases, quadrupling their 2011 count of 965. This is the state where 7.6 percent of parents opted for exemptions (among all grade levels, not just kindergarten) in 2008-09, more than four times the national rate of about 1.5 percent. Minnesota and Wisconsin have similarly high rates and both have personal belief exemptions. The most recent numbers out of Minnesota are 3,748 — they had just 661 cases last year. Wisconsin is leading the nation with 4,640 cases, up from 1,192 in 2011, at last report in the Sept. 28 Morbidity and Mortality Weekly Report (pdf) at the CDC.


But the increases are being seen across the nation, as this CDC map shows. Texas (1,287 cases to date this year), Pennsylvania (1,428 cases) and Colorado (897 cases, though they averaged 158 over the past four years) are among other states with personal belief exemptions (though the Texas one has significant restrictions and hoops to jump through). But it’s clear the decreased effectiveness of the vaccine is playing the biggest role, especially in places like Iowa (1,168 cases) and New York (2,107), neither of which offer personal belief exemptions.


Again, though, a less effective vaccine does not mean a worthless vaccine. It still offers 85 percent protection when you get the shot or the booster, and even as it loses some effectiveness as the years go by, you’re far less likely to have a severe case if you do get the disease. And you’re protecting those around you, including the babies who have only been here a few months and are the most susceptible to catching and dying from the disease.


Bottom line — it’s worth it to get the shot, and to make sure your kids do too.


Opinions expressed in this article do not either necessarily reflect or conflict with those of the DXS editorial team or contributors.
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[Tara Haelle (www.tarahaelle.com) is a health and science writer and a photojournalist based in Peoria, IL after years as a Texan, where she earned her undergraduate degrees and MA in journalism at UT-Austin. She’s the mental health editor for dailyRx.com in addition to reporting on pediatrics, vaccines, sleep, parenting, prenatal care and obesity. Her blog, Red Wine & Apple Sauce, focuses on health and science news for moms, and you can follow her on Twitter at @health_reporter and @tarasue. She’s also swum with 9 different species of sharks, climbed Kilimanjaro and backpacked in over 40 countries, but that was in the years of B.C. (Before Children). She finds that two-year-olds are tougher to tussle with than tiger sharks.]

Leah Gerber, conservation biologist and lover of sushi


Leah Gerber and her little lovelies!
Leah Gerber is an Associate Professor of ecology at Arizona State University.  Her research is motivated by a desire to connect academic pursuits in conservation science to decision tools and effective conservation solutions. This approach includes a solid grounding in natural history and primary data collection, quantitative methods and an appreciation for the interactions between humans and the environment. She is keenly aware of the need for the communication of scientific results to the public and to government and non-governmental agencies.  This communication is essential for the translation of scientific results into tenable conservation solutions.  
DXS: First, can you give me a quick overview of what your scientific background is and your current connection to science?

LG: I learned about ecology and environmental conservation as an undergraduate and quickly became  motivated to do science that impacted the real world of conservation.  Learning about the impacts of humans on nature was a wake-up call for me, and inspired me to channel my feeling of concern for the demise of nature in a positive way.

From there, I have walked the tightrope between science and policy.  After getting my undergraduate degree in environmental biology, I wanted to do more than just the science.  So I enrolled in a masters program at the University of Washington – an interdisciplinary program called Marine Affairs.  It was a great experience, but I wanted to have more substance to my science background – I wanted to know how to do the science in addition to how to apply the science. 

This compelled me to enter a PhD at the University of Washington, which was largely funded by NOAA.  My thesis involved trying to figure out how to make decisions about endangered species – how to determine which were endangered and which were threatened.  This was a perfect project given my interest in developing tools to solve problems.  After finishing my PhD, I did a postdoc at the National Center for Ecological Analysis and Synthesis (NCEAS) and developed approaches for marine reserve design and endangered species recovery.  I was at NCEAS for three years before starting on the tenure track at Arizona State University.  I’ve been at ASU for about 10 years now.   

A major theme in my work has remained constant – that is, how to use the information we are generating in the natural and social sciences to better manage our natural world.  Pre-tenure I focused a lot more on doing the science, publishing in good journals, and hoping that it made its way into good policy.  Now that I am midcareer, meaning that I have a good amount of papers and tenure, I am enjoying the opportunity to work with practitioners outside of academia.  For instance, I just got off the phone with someone from National Geographic regarding my recent publicationon seafood health and sustainability.  In that study, we performed an analysis regarding seafood in the context of health and sustainability, to answer simple questions like, what to order when out to sushi?  How do we educate about health benefits and risks?  We will be organizing a workshop to help restaurant chains, grocery stores, as well as environmental NGOs identify a path forward in informing consumers about healthy and sustainable seafood choices.  As a tenured professor, I feel fortunate to have the opportunity to work at the science-policy interface and to give society some science that is truly applicable. 

DXS: It is too bad that you have to wait until you are more established and have tenure to go out and engage with the public, because this type of thing is just so important!

LG: Yes, I agree.  There isn’t a clear path in academia when it comes to public engagement.  But in recent years I have felt optimistic – the landscape within academia is starting to change, and at ASU this change is noticeable.  We have a fabulous president, Michael Crow, who has really transformed ASU from just another state institution to a leader in sustainability.  Part of this is the establishment of the Global Institute for Sustainability, and one of Michael Crow’s mantras is “community embeddedness.”  He is really on board with this type of thing and I have seen evidence of his commitment trickle down throughout the University.  For instance, when I first arrived, I had to justify and explain why I was serving on these federal recovery teams for endangered species.  Now I feel that there is no justification needed.  Developing solutions is not only so important for society, but should also be a key aspect of what we do at Universities.

DXS: We were introduced by another fantastic science communicator, Liz Neeley, who you met at a communications workshop.  Why is it important to take part in this type of training? 

LG: I met the Fantastic and Fashionable Liz through the Leopold Leadership Program, offered through the Woods Institute for the Environment at Stanford University.  The Leopold Leadership training was the best professional development experience of my career, and has made me a better translator and communicator of science to policy.  Pre-Leopold, I had little training in communications, and there I was, in a teaching position where I taught hundreds students. I thought to myself, well, how do I do this?  The Leopold experience has solidified my commitment to teaching students about communication and engaging in policy.

One development emerging from this training is a science communication symposium at the AAAS meeting.  Elena Bennett and I are giving a talk on overcoming institutional barriers for community engagement, and we will address the issues head on.  We put out a survey asking others if they faced institutional barriers, and how they might work to engage more. 

DXS: What ways do you express yourself creatively that may not have a single thing to do with science?

LG: I have 2 young kids, a 3yo and a 7yo.  Being a mom helps me keep it real -  I love that I get to enjoy the awe of discovering the world with my girls.  We just got a puppy this weekend and we are having fun dressing her up and painting her nails (only partly joking).  Other things that I do that are creative – truthfully, I am uninteresting – I don’t bake bread or go to the opera.  I just work and take care of my kids.  I practice yoga for my own sanity and also love to work in the garden.  Doing these things gives me a reason to pause and step off the treadmill of keeping up with everything. 


DXS: Do you find that your scientific background informs the creativity you have with your kids or your yoga practice, even though what you do may not specifically be scientific?

LG: I think there is synergy with my science and my kids and my yoga practice in helping me to accept things and be mindful – but not in any conscious way.  For instance, when doing my science, the type A person that I am, I have an inclination to keep pushing, pushing, pushing.  My kids and my yoga help me to shift gears and accept that things are going to happen when they happen.  I try to let the kids be kids, including the associated chaos, and accept that this is a snapshot in time that they will be little.  Now I find joy in that chaos.  Having kids and yoga gives me a little more perspective, and the knowledge that things aren’t lined up and neatly placed in a box.  It rounds me out.

DXS: Are your kids are major influencers in your career?

LG: My first child, Gabriella, was born just after I submitted my application  for tenure – so it was good timing.  And I was able to slow down.  I quickly realized that I wasn’t able to work a 60+hour week.  Before kids, I lived to work.  Now, I work to live.  I absolutely love my job and I feel so lucky that I have a career that I believe in and that I am actually paid to do it – it’s not just a hobby.  But having kids made me chill out a little.  If I get a paper rejected, I can let it go instead of lamenting about it for weeks.  It has made me healthier.  I don’t necessarily know if it has had positive impact on my career – time will tell.  While my publication rate may be slightly smaller, I think my work now has different dimensions, and greater depth. 

I am still pretty passionate about my work, and my kids know what I do and are proud of it.  They share it with their classmates, and take every opportunity to wax poetic about how their mom saves animals in the ocean.  They also have a built in conservation effort – my 7YO gets irritated when she can’t find a compost bin, and her new thing is to only fill her cup half way because she will only drink a little bit of water.

DXS: When you decided to have children, did your colleagues view you differently?  Did they consider that you were sending your career down the tubes or was it a supportive environment?

LG: I honestly had a really positive experience.  I can’t think of any negative sentiments from my colleagues, and they were actually really supportive.  For instance, when I was pregnant with my first daughter, ASU did not have a maternity leave policy.  Before that, you would have to take sick leave.  So my colleague worked within the parameters of the unit to give me maternity leave.  And then with my second daughter, our new president had established a maternity policy. 

The support of my colleagues at ASU has made me feel loyal to my institution.  Normally, I am loyal to people and not institutions, but overall, the support has been fabulous.  Of course, with having the kids in each case, I did decline a lot of invitations – some pretty significant ones – but I did not have a desire to drag a newborn to give a talk, especially when I was nursing.  And it was hard for me to do this at times, especially given my career driven nature, and I had to learn to accept that there would be other opportunities.

I had to shift it down a notch and realize that the world wasn’t going to freeze over, and that I could shift it back to high gear later.  With “mommy brain”, I knew I wasn’t going to be at the top of my game at that point in my life.  But I have incredible role models.  Most notable is Jane Lubchenco, currently the Director of the National Oceanic and Atmospheric Administration.  During the first part of her career, she shared a position with her husband – each did 50% – and they did that on purpose so they’d be able to enjoy having children and effectively take care of them.  Now, she is in the National Academy, is having major scientific impacts, and she did it all despite having kids.  If she can do it, why cant the rest of us?

DXS: Given your experiences as a researcher, as a mother, and now as a major science communicator, do you feel that your ability to talk to people has evolved?

LG: Absolutely.  I think that the Leopold Training Program, which selects 20 academics from North America to participate in retreats to learn how to be better communicate and lead, has re-inspired all who attended.  It has recharged our batteries and allowed us to make realizations that doing good science and putting it out there via scientific publication is just not enough.  We also have to push it out there and make it available to a broader, more diverse population.  As part of the training, we also learned about different thinking styles – super analytical or super emotional – and after I returned, I had my lab group participate in this type of exercise.  And now I feel like I can better assess a persons thinking style and adjust the way I communicate accordingly.

DXS: Did you always have the ability to talk to the general public or does having kids help you to better understand some of the nuances associated with science communication?

LG: I think so. In fact, I am thinking back to when I had a paper in Sciencecome out around the time that I had my first child.  It got a lot of news coverage and was featured in Time magazine. I thought it was so cool at the time, but looking back on it I realized that have come a long way.  I said something to a journalist, who then asked me to translate it into “plain English.”  It was a little bit of a jab. 

Now, with kids, I can tell you a lot more about my research and can better see the broader impact.  Talking to them helps me to do that. Here is a conversation about my research with my daughter:

L: Mama is working on figuring out how to help the whales that people like to eat.  It’s a big problem because some people like to eat whales and some like to see them swimming in the ocean.

G: What we have to do is let the people eat the whales in the ocean, and buy some whales from the pet store to put back in the ocean.  How much do whales cost?

L: Good idea. But you can’t buy whales at the store. They are too big. And if we take them all out of the ocean there will be none left.

G: Well instead we should ask the people to eat bad things like sharks.

L: Another good idea. But if we take sharks out there will be no predators to eat the big fish. And the whole ecosystem would collapse.=

G: Well then the people should eat other things like fish instead of whales. They should buy a fishing pole and catch a fish and eat those instead of whales.

L: What about chicken, shouldn’t people just eat chicken?

G: Mama, we can’t kill chickens. Chickens are nicer than fish, so that’s why we have to eat fish.

L: What about just eating vegetables?

G: Oh mama, some people are meat-eaters.  And there are no more dinosaurs.  They all got extinct.  They should have saved some of the dinosaur meat in the freezer for the meat-eaters.  When the dinosaurs come back, there will be enough meat to eat and people won’t want to eat whales.

The simplicity of taking myself out of my research bubble and engaging with a creative (and nonlinear?) 7YO has taught me how to be a better communicator – with the media, with my students, and with the general population.

DXS: Do you think these efforts in science communication are helping to shift other peoples perspectives about who a scientist actually is?  For instance, are we changing the old crazy haired white guy stereotype?

LG: Well, I hope so.  A couple of examples – again, as a mom, one of my daughters a Girl Scout and I get to help with the troop.  One of the themes was to teach about environmental and conservations awareness.  We did this Crayola molding experiment where we put our fingers into cold water.  We then did the same thing except we put modeling clay over our fingers before putting them into the cold water and to learn about adaptations to extreme environments.  Also, we play games where they simulate fishing – what if there is plastic?  What happens to you if you eat that?  My hope is that this shows these young girls that science is both interesting and fun. 

Another thing that just happened today is that I was contacted by Martha Stewart’s office, and it seems that some of my research results will be featured in the October issue of Martha Stewart Living.  The message here is that I happen to care about the ocean, but I also love sushi.  I also I care about health. I am not just a nerd in a lab coat. I am a mom, I do yoga, I have wonderful friends, and here is the kind of science that I do.  It seems to me that it is better to connect with others when I can give them something that is relevant to their lives instead of a more abstract ecological theory. 

DXS: If you had something you could say to the younger you about getting on your chosen career path, what would you say?

LG: I feel like I have been very effective at figuring out how to get from point A to point B, but less successful at savoring the process.  I think that I’d tell myself to make time to celebrate the small victories. I have also learned to identify what kind of research is most exciting, and I would tell myself to say “no” to everything that is only moderately interesting.  I tell my grad students that if you don’t dive in head first, you won’t ever know. So why just not give it a try!  And if it doesn’t work, move on.  Also, if something isn’t making you happy, change!  Academia isn’t for everyone, and there is a lot more to life than science.