By Janet R. Gilsdorf
Every April, when the robins sing and the trees erupt in leaves, I think of Brad — of the curtain wafting through his open window, of the sounds of his iron lung from within, of the heartache of his family. Brad and I grew up at a time when worried mothers barred their children from swimming pools, the circus, and the Fourth of July parade for fear of paralysis. It was constantly on everyone’s minds, cast a shadow over all summertime activities. In spite of the caution, Brad got polio — bad polio, which further terrorized our mothers. It still haunts me. If, somehow, he had managed to avoid the virus for a couple years until the Salk vaccine arrived, none of that — the iron lung, the shriveled limbs, the sling to hold up his head — would have happened.
In 1954, many children in my town, myself included, became “Polio Pioneers” because our parents made us participate in the massive clinical trial of the Salk vaccine. Some of us received the shot of killed virus, others received a placebo. We were proud, albeit scared, to get those jabs, to be part of a big, important experiment. Our moms and dads would have done anything to rid the country of that dreaded disease.
Because the vaccine is so effective, mothers today aren’t terrified of polio. Children in our neighborhoods aren’t growing up in iron lungs or shuffling to school in leg braces. We seem so safe. But our world is smaller than it used to be. The oceans along our coasts can’t stop a pestilence from reaching us from abroad. A polio virus infecting a child in Pakistan, Nigeria, or Afghanistan can hop a plane to New York or Los Angeles or Frankfurt or London, find an unimmunized child, and spread to other unimmunized people. Our earth is not yet free of polio.
Germs are like things that go bump in the night. They can’t been seen, they lurk in familiar places, they are sometimes very harmful, and they instill great fear—some justified, some not.
Fear of measles, like fear of polio, is justified. In the old days, one in twenty children with measles developed pneumonia, one or two in a thousand died. The vaccine changed all that in the developed world. But, measles continues to rage in underdeveloped countries. In a race for very high contagiousness, the measles virus ties the chickenpox virus (which causes another vaccine-preventable childhood infection). Both viruses can catch a breeze and fly. Or they may linger in still air for over an hour. They, too, ride airplanes. This year alone, outbreaks of measles started by imported cases have occurred in New York, California, Massachusetts, Washington, Texas, British Columbia, Italy, Germany, and Netherlands.
Fear of whooping cough (aka pertussis) is also justified. In the pediatric hospital where I work, two young children have died of this infection in the past several years and many others have suffered from the disease, which used to be called “the one-hundred day cough.” It lasts a long time and antibiotic treatment does nothing to shorten the course. Young children with pertussis may quit breathing, have seizures, or bleed into their eyes. It spreads like invisible smoke around high schools and places where people gather … and cough on each other.
On the other hand, fear of vaccines — immunizations against measles, polio, chickenpox, or whooping cough — is hard to understand. In the grand scheme of things, any of these serious infections is a much greater threat than the minimal side effects of a vaccine to prevent them. Just ask the mothers of the children who died of pertussis in my hospital. It’s true that the absolute risk of these infections in resource rich areas is small. But, for even rare infections, a 0.01% risk of disease translates into hundreds of healthy children who don’t have to be sick, or worse yet die, of a preventable infection.
In spite of the great success of vaccines, they aren’t perfect. Perfection is a tall order. Still we can do better. Fortunately, because of the work of my medical and scientific colleagues, new vaccines under development hold promise to be more effective with fewer doses, to provide increased durability of vaccine-induced immunity, and to be even freer of their already rare side effects. And, we’re creating vaccines against respiratory syncytial virus, Staphylococcus aureus, group A Streptococcus, herpes virus, and HIV, to name a few.
Brad would be proud of how far we have come in protecting our children from the horrible affliction that crippled him. He’d also be furious at our failure to vaccinate all our children. Every single one of them. He’d tell us that no child should ever be sacrificed to the ravages of polio or measles or chicken pox or whooping cough.
Janet R. Gilsdorf, MD is the Robert P. Kelch Research Professor of Pediatrics at the University of Michigan Medical School and pediatric infectious diseases physician at C. S. Mott Children’s Hospital, Ann Arbor. She is also professor of epidemiology at the University of Michigan and President-elect of the Pediatric Infectious Diseases Society. Her research focuses on developing new vaccines against Haemophilus influenzae, a bacterium that causes ear infections in children and bronchitis in older adults. She is the author of Inside/Outside: A Physician’s Journey with Breast Cancer and the novel Ten Days.
To raise awareness of World Immunization Week, the editors of Clinical Infectious Diseases, The Journal of Infectious Diseases, Open Forum Infectious Diseases, and Journal of the Pediatric Infectious Diseases Society have highlighted recent, topical articles, which have been made freely available throughout the observance week in a World Immunization Week Virtual Issue. Oxford University Press publishes The Journal of Infectious Diseases, Clinical Infectious Diseases, and Open Forum Infectious Diseases on behalf of the HIV Medicine Association and the Infectious Diseases Society of America (IDSA), and Journal of the Pediatric Infectious Diseases Society on behalf of the Pediatric Infectious Diseases Society (PIDS).
The Journal of the Pediatric Infectious Diseases Society (JPIDS), the official journal of the Pediatric Infectious Diseases Society, is dedicated to perinatal, childhood, and adolescent infectious diseases. The journal is a high-quality source of original research articles, clinical trial reports, guidelines, and topical reviews, with particular attention to the interests and needs of the global pediatric infectious diseases communities.
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By Rochelle Caplan, MD
Surely the time has finally come to put our heads together and focus on three seldom connected variables regarding mass murders in the United States: the lack of comprehensive psychiatric care for individuals with mental illness, poor public recognition of the red flags that an individual might harm others, and easy access to firearms.
How should we address the first problem? The fiscal problems this country has faced during the past decade, combined with skewed budget priorities, have lead to a significant reduction in public health care, in particular for mental illness. Insurance companies have limited the time providers have for mental health assessments, the duration and frequency of treatment, and the types of intervention they cover. These cutbacks have forced psychiatrists to do abbreviated and superficial psychiatric evaluations and to prescribe medications as stopgap treatment in lieu of more effective evidence-based therapies. Furthermore, the number of individuals without mental health coverage who also face unemployment, homelessness, or insufficient money to feed and clothe their families — all significant mental health stressors — is steadily rising.
How then can mental health professionals conduct the comprehensive, time consuming evaluations needed to determine if an individual might be dangerous towards others? Self-report questionnaires, another quick method professionals use to conduct psychiatric evaluations, are clearly not the answer. Few people with homicidal or suicidal thoughts acknowledge these “socially unacceptable” intentions or plans on paper. Expert clinical acumen is needed to carefully and sensitively help patients talk about these “taboo” topics and their triggers. A five-to-ten minute psychiatric appointment clearly doesn’t do the job!
The lack of comprehensive mental health care is most sorely evident for such conditions as schizophrenia, as well as psychosis associated with substance abuse, depression, bipolar disorder, neurological disorders, or medical illnesses. In these conditions individuals can be plagued by and act in response to hallucinations that include voices commanding them to kill or visions that incite their aggressive response. Delusions (rigid, pervasive, and unreasonable thoughts) that people threaten them can also cause an aggressive response. Mass murderers might act out their hallucinations and delusions, as in the attempted assassination of congresswoman Gabrielle Gifford and murder of five bystanders, and in the Columbine, Batman, and Virginia Tech massacres.
Lack of time often precludes pediatric professionals from seeing children without their parents and detecting early warning signs of homicidal or suicidal plans. Similarly, physicians might have time to talk to adolescents but not to their parents. As a result, they might miss hearing about red flags of possible aggression by the youth and/or his peers.
The Affordable Care Act (Obamacare) will provide health insurance for more people, but what about quality mental health care? Few mentally ill patients are able to fight for their sorely needed unmet mental health care needs. Due to the stigma of mental illness and the related financial and heavy emotional burden, their families seldom have the power and resources needed to lobby elected officials or use the Internet and other media to publicize their plight.
How can we recognize the red flags of a potential mass murderer? In addition to well-trained mental health professionals with expertise, clinical acumen, and sufficient time with their patients, there is a need to educate the public about severe mental illness. Parents, family members, teachers, community groups, and religious leaders all need instruction to recognize possible early signs of mental illness. This knowledge will help them understand the plight and suffering of individuals with severe mental illness. And, most importantly, this awareness can lead to early referral, treatment, and prevention of violence due to mental illness.
Prompt recognition and early treatment of these symptoms are essential because firearms are so easily obtained in the United States. To get a driver’s license, individuals complete a Driver’s Ed course, pass a knowledge test, take driving lessons, drive a car with an adult for a fixed period, and then take a driving test. The underlying assumption is that irresponsible driving can physically harm others, the driver, and property. For this reason, individuals with epilepsy who experienced a seizure within the past year are barred from driving. Shouldn’t the same principles apply to guns? Yet, individuals can obtain guns without prior psychiatric evaluations, and there are no laws and regulations to safeguard these weapons in homes to prevent children and individuals with severe mental illness from gaining access to them. Reports on accidents caused by children and suicide by adolescents with their parents’ guns are common. According to a Center for Disease Control study, 1.6 million homes have loaded and unlocked firearms (Okoro et al., 2005).
As a child psychiatrist and parent, I regard the Newtown horrific mass murder of elementary age children as a final wake up call so that we will never again ask, “How many more children have to die?” Nothing can justify this preventable tragedy to the parents and families of their murdered beloved ones. The time has come to halt the unrelentless chipping away of our mental health care services and quality of care for mental illness, to educate the community about severe mental illness, and to implement strict controls on access to firearms.
Rochelle Caplan, M.D. is UCLA Professor Emeritus of Psychiatry and past Director the UCLA Pediatric Neuropsychiatry Program. She is co-author of “How many more questions?” : Techniques for Clinical interviews of Young Medically Ill Children (Oxford University Press) and author of Manual for Parents of Children with Epilepsy (Epilepsy Foundation). She studies thinking and behavior in pediatric neurobehavioral disorders (schizophrenia, epilepsy, attention-deficit hyperactivity disorder, high functioning autism) and related brain structure and function; unmet mental health need in pediatric epilepsy; and pediatric non-epileptic seizures.
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David S. Wendler is Head, Unit on Vulnerable Populations, in the Department of Bioethics at the NIH Clinical Center. His work focuses on the ethics of research with individuals who cannot give informed consent. In his book, The Ethics of Pediatric Research, he looks at what appears to be an irresolvable dilemma: either we can protect pediatric subjects from exploitation, or we can protect pediatric patients from dangerous medicines, but not both. Wendler offers an original justification for pediatric research based on an in-depth analysis of when it is in our interests to help others. In the excerpt below we learn the history of pediatric research constraints.
The early history of pediatric research includes far too many examples of abusive research. One account maintains that: “The history of pediatric experimentation is largely one of child abuse.” In addition, many of the abuses cited by Henry Beecher in his famous 1966 article listing research abuses at prominent institutions in the United States included children, and a number of these studies focused on children specifically. Pappworth also cites many abusive studies involving children. There is inevitable debate over whether one or another of the cited examples in fact involved abusive research. What options did the children have? How are those options relevant to the appropriateness of the study in question? What impact did the study in fact have on the participating children?
Bracketing these questions, which largely are of historic interest, it is clear that many instances of unethical and abusive studies have occurred in the history of pediatric research. One of the earliest recorded cases of abuse occurred in 1892 when Albert Niesser, a medical professor at Breslau, gave serum taken from syphilis patients to unwitting individuals. Several of the recipients contracted syphilis, leading to public outcry and a government ruling, promulgated in 1900 and codified in the 1931 German guidelines, resulting in perhaps the first systematic regulations governing clinical research. These guidelines explicitly prohibit nonbeneficial research with children, as well as pediatric research that “in any way endangers the child.” It is difficult to imagine a research study that does not pose some risks to participating children. Seemingly innocuous surveys of health behavior, for instance, pose some chance of upsetting children. Even widely accepted pediatric research that offers a compensating potential for clinical benefit poses some chance of harm. In practice, then, these guidelines may prohibit essentially all pediatric research.
The German ruling of 1900 is one instance among many in which research guidelines were developed in response to a specific scandal. Most famously, in response to the horrific experiments perpetrated by the Nazis, the Nuremberg Code stipulates that participants’ consent is “essential” to ethical research. This approach, even more so than the German guidelines of 1931, appears to prohibit essentially all research with children. There is an obvious and very important virtue to this approach. If children are prohibited from being enrolled in clinical research, it will be difficult for investigators to exploit them in that context.
By the 1960s, increasing sentiment indicated that the Nuremberg Code needed to be modified in several important respects, especially to address the fact that it did not include a requirement that clinical research studies should be reviewed and approv
