Thirty-five years of medical practice have convinced me that all vaccines carry an important risk of chronic disease that is inherent in the vaccination process and indeed central to how they work. Yet the growing concerns of parents and legislators and media reports about them rarely if ever elicit anything beyond automatic denials by medical and public health authorities alike. Reflecting on this glaring discrepancy is the main focus of this essay. Writing these lines has also helped me appreciate how much the invisibility heightens the risk and how intimately these phenomena are connected, like mirror-images of the same reality, which makes it imperative to study them together.
Since I am mainly a clinician, I will begin with a story. It concerns a 12-year-old boy whom I know of solely from his mother’s letter, but her words are so heartfelt and so congruent with the rest of my experience that I cannot doubt their veracity:
My son Adam was healthy until his first MMR at 15 months. Within 2 weeks he had flu and cold symptoms, which persisted for 6 weeks, his eyes became puffy, and he was hospitalized with nephrotic syndrome. A renal biopsy showed “focal sclerosing glomerulonephritis,” but he didn’t respond to steroids. I asked if it could be related to the vaccine, but they told me it couldn’t, and we accepted that. Over the next 4 years he was hospitalized repeatedly but then went into remission, seeming normal and healthy and staying off all medications for 5 years.
When he turned 10, his pediatrician recommended a booster, saying that a rise in measles cases made it dangerous for him not to be protected. I checked the PDR and other sources but found no warning for kidney disease and no listing of it as an adverse reaction, so I agreed to it. In less than 2 weeks he relapsed, with 4+ proteinuria, swelling, and weight gain, signs that we recognized immediately. He was admitted in hypertensive crisis, with blood in the urine, fluid in the lungs, and massive weight gain. On Cytoxan, massive doses of Prednisone, and three other drugs he slowly improved, but missed another 7 months of school.
It’s been 2 years since that horrible episode, and he still needs Captopril for high blood pressure and spills 4+ protein every day. The doctor says he sustained major kidney damage, will always need medication to control his blood pressure, and will worsen as he grows, necessitating a transplant eventually. This time I was convinced that his condition was related to the vaccine, but still the doctors didn’t take me seriously and told me it was a coincidence.
I searched for information and even contacted the manufacturer of the vaccine. Finally they sent me two case reports of nephrotic syndrome following the MMR vaccine. It’s very difficult for lay people to get information or even ask questions, since we don’t use correct medical terms and feel stupid. Please tell me if my ideas are reasonable. I don’t think my son could tolerate another episode, and I think he’d have normal blood pressure and kidney function if not for that second shot.
I also have great concern for other children who develop nephrotic syndrome some weeks after receiving MMR and whose doctors never make the connection. They could all be at great risk if revaccinated. I realize that this letter has taken up a lot of your time, and I’d appreciate any help you can give me. Thank you.1
Like many others who seek my help, this woman honestly believed that her son had been crippled for life by the MMR vaccine, yet had no intention of suing the drug company who manufactured it, the doctors who administered it, or the Government’s Vaccine Injury Compensation program, as she was entitled to do. Whether she didn’t think she could win, a conclusion my experience would certainly justify, or simply was not a litigious person, as seems more relevant in her case, the absence of such motive only lends further credence to her story. She was writing to me simply to find a physician to hear and validate the truth of her experience, which neither the pediatrician who gave the shots, nor the specialists who treated Adam in the hospital, nor any of the other doctors she spoke to were willing to do. Although I had very little else to offer her, it was more than enough to earn her gratitude.
To those inclined to discredit such tales, I reply that the confidences our patients entrust to us represent the truth as they live it. Yet when vaccines are involved, such stories are routinely dismissed out of hand, as if they couldn’t possibly be true or worthy of serious consideration. That was the reaction of every doctor involved in Adam’s care, despite compelling evidence to the contrary, even after case reports were supplied by the drug company itself. Whether a canny strategy to defeat possible litigation or simply the instinctive shielding of a cherished world-view from threat of change, this defensive and hostile stance is so pervasive in the medical profession as to merit careful study in itself.
Richard Horton, Editor of The Lancet, felt the sting of censorship himself after publishing an article linking cases of infantile autism and colitis to the MMR vaccine:
Today vaccines are largely an untouchable subject, their benefits too obvious to be questioned. Any hint of dissent concerning their clinical effectiveness and overall social value is met with bitter rebuttal and resentment. A former President of the UK Academy of Medical Science actually threatened to get me sacked for publishing work that raised questions about the MMR vaccine, while at a dinner party years later, the partner of a government vaccine specialist asked, “Will you ever be forgiven?” Forgiven for what, I wondered?2
Dr. Horton himself neither believed in the research nor endorsed its conclusions. His only “mistake,” if mistake it was, lay in permitting the author, a well-known British gastroenterologist, to publish his findings without regard for their political correctness. Needless to say, the snubs and threats he faced for rocking the boat were less serious than the reprisals exacted against the author, whose work was officially repudiated without testing it, and whose career at a London teaching hospital was abruptly terminated.3
Finally, Adam’s misfortune obliges us to ask how “glomerulonephritis,” “autism,” “encephalopathy,” or any other disease gets to be identified as a bona fide complication of a vaccine, such that the victim becomes eligible to receive damages in court. In spite of two reports of MMR nephritis documented by the manufacturer, renal failure is still not recognized as an adverse effect of the vaccine, an omission that undoubtedly helped Adam’s doctors to frustrate his mother’s inquiries.
Exactly similar editing characterizes the Federal guidelines for compensation of vaccine-injured patients, which would never have been enacted in the first place without the repeated insistence of their parents, and which continue to be pared down even further by the determined opposition of the vaccine manufacturers, the American Academy of Pediatrics, and other authoritative and influential pro-vaccine groups. As reflected in the official compensation guidelines, research studies of vaccine-related injuries are limited to a few extreme reactions to particular vaccines, because these alone occur often enough to attain statistical significance in large populations. Such a policy automatically disquallifies two much larger and partly overlapping classes of phenomena that my own research has uncovered: 1) exacerbation of the ordinary chronic diseases of childhood, according to individual susceptibility, often representing 2) a nonspecific effect of the vaccination process in general, for which any vaccine will do. Restricting the issue of vaccine safety to specific effects of specific vaccines is a major reason why the true extent of vaccine-related illness has always been invisible and will likely remain so until the question is reframed in a more comprehensive way.
An equally troubling problem with the approved list of vaccine-related injuries is their restriction in time to acute events occurring within a few days afterward,4 i. e., soon enough for the vaccine to be regarded as the necessary and sufficient cause of the reaction, as if independently of any prior susceptibility. In Adam’s case as in many others, vague, nondescript symptoms appeared soon after vaccination, but the full picture of nephritis did not emerge and could not be diagnosed until six weeks after the first shot and two weeks after the second, by which time it was no longer an acute or fixed injury, but already a chronic, self-sustaining illness that has continued to develop and worsen over the years, so that a claim on his behalf would undoubtedly have been rejected even if it had been filed.
In what follows I will consider five aspects of the vaccine issue: 1) specific effects of specific vaccines, as described in the literature; 2) nonspecific effects of the vaccination process, based on cases from my own practice; 3) how vaccines actually work; 4) several individual vaccines; and 5) implications for vaccine and health policy.
The vaccination literature contains no mention of adverse effects of the process itself, but only a few documented effects of specific vaccines, such as encephalopathy, autism, anaphylaxis, and so forth, most still hotly contested by authorities in the field. Even those officially recognized as legitimate grounds for compensation under the Federal guidelines are actually vague, generic terms that are applicable to more than one vaccine. Anaphylaxis, for example, is compensable not only for DPT and its components but also for MMR, and will undoubtedly implicate some or all of the newer vaccines in the future.
This all-purpose diagnostic category was the first adverse reaction to be identified and made compensable under the Vaccine Injury Compensation Act of 1986, which it also helped bring about, and is by far the most extensively documented. Here is the story of a 3-year-old girl whose mother wrote to me for support of her mother’s pending litigation against the child’s doctors and the Canadian government:
Our daughter was damaged by her 18-month vaccination, which consisted of the DPT, HiB, and oral polio vaccines. One week later she had a bizarre screaming episode, and is now labeled “autistic.” An MRI showed brain inflammation and demyelination. She had 25 words at 18 months and was ahead in some developmental milestones as well as being quite social. After her screaming episode she stopped talking, ignored the neighborhood kids, made no eye contact, and developed hand-flapping and other repetitive behaviors. Her pediatrician agreed that she was autistic, and we told the specialist that she changed abruptly after the vaccine, and showed him a video of her as an infant and toddler, in which she seemed totally normal. From photos taken before and after, the damage is obvious: her eyes have lost their gleam, and she looks sad and alone, but the doctors dismissed it as a coincidence, and no mention of any vaccine was ever included in their reports.5
Leaving aside the extremity of her misfortune and the refusal of her doctors to accept any responsibility for it, I call attention to her diagnoses, chiefly “encephalopathy,” a synonym for “brain damage,” and the equally vague term “autism,” which today is linked more commonly with the MMR vaccine. Both her sad tale and the necessity of fixing a label to it indicate that these are merely broad, generic, and often interchangeable categories, referring to conditions that can result from several different vaccines, rather than being characteristic of any particular one.
Here is another case, from the lawyer who represented him, a 3-year-old boy who reacted badly to his first DPT and suffered permanent brain damage after the second:
Our firm represents a child who was born normal and healthy in every way. After the first DPT at 6 weeks, he began falling off growth charts, exhhibited multiple developmental delays, and was diagnosed as “failure to thrive,” but then slowly began to recover. At 5 months he received a second DPT, and his delays became much more extreme. He has never recovered. He is now 3 years old, with the mental capacity of an infant of a year and a half. I am convinced that his problems came about as a result of the DPT. In view of what happened after the first shot, he should not have had the second, or at least the pertussis component of it.6
This tragic pattern of a warning ignored, of a lesser version of the same illness with eventual recovery, followed by death or irreversible brain damage after a repeat vaccination, formed a major subtext of the exposé DPT: A Shot in the Dark, in which medical historian Harris Coulter and Barbara Loe Fisher, the mother of such a child, collected the stories of over 100 little victims.7 The outcry over DPT encouraged Ms. Fisher and a friend to found the National Vaccine Information Center, a support and advocacy group for families and friends of vaccine-injured children.
NVIC still hosts conferences, provides educational materials, and maintains a data-base and network of local chapters all over the country. It has kept vaccine issues in the public eye, lobbied and testified before Congress, and helped to write the Vaccine Injury Compensation Act of 1986, which created a program for no-fault compensation of vaccine injuries as an alternative to litigation. Yet Coulter and Fisher’s book was withdrawn by the publisher soon after its release, while an influential group of pediatricians still refuses to accept even these most egregious cases as having any connection with the vaccine. In 1990, Dr. Edward Mortimer et al. published a review in the Journal of the AMA which claimed that
No child who was previously normal without a prior history of seizures had a seizure in the three days following a DPT vaccine that marked the onset of epilepsy or other neurological or developmental abnormality. Our negative findings reinforce those of previous investigators that serious neurological events are rarely if ever caused by DPT.8
In the lead editorial of the same issue, Dr. James Cherry, another leading advocate, cited these data as conclusive proof that DPT encephalopathy is a “myth,” or coincidence, which should be erased once and for all from the ever-shrinking list of “genuine” adverse reactions providing an acceptable basis for compensation:
In recent months three controlled studies examine the risk of seizures and other acute neurological illnesses after DPT, involving 230,000 children and 713,000 vaccinations, These studies found no evidence of a causal link between the DPT and permanent neurological illness. It is not surprising that physicians tended to blame the vaccine for these events. But these recent studies show that the major problem has been our failure to separate sequences from consequences. It is late in the 20th century, and it’s time for the myth of “DPT encephalopathy” to end.9
His words also tally closely with the official report of the Advisory Committee on Immunization Practices, which acknowledged the opposing claims of parents but then tied them up in a skein of evasions, equivocations, and government bureaucratese:
Rare but serious acute neurological illnesses, including encephalitis, encephalopathy, and convulsions, have been reported following the whole-cell DPT. The National Childhood Encephalopathy Study provides evidence that DPT can cause encephalopathy. This occurs rarely, but detailed follow-up indicates that children who had a serious neurological illness after DPT were significantly more likely than children in the control group to have chronic CNS dysfunction 10 years later and to have been given the DPT within 7 days of its onset.
ACIP proposed 3 possible explanations for this association: 1) the dysfunction could have been caused by DPT; 2) the DPT could trigger events in children with brain or metabolic abnormalities who might also experience them if other stimuli such as fever or infection are present; and 3) the DPT might cause the event in children with underlying abnormalities that would have become dysfunctional even without it. The data do not support any one explanation over the others. The evidence was consistent with a causal relationship, but insufficient to determine whether DPT increases the overall risk 10 years later.10
But even an innate predisposition to develop such complications by no means ex-cludes the possibility of a vaccine reaction, since all illness requires both external morbid influences and an individual receptive to them. This is the ultimate riddle of all medical practice, which the emphasis on specific effects for specific vaccines blithely glosses over.
It is obvious to me and to most parents that a family history of serious adverse reactions, especially in parents or siblings, places children in a much higher risk pool and therefore provides valid grounds for exempting them from vaccinations. Yet even affidavits from Board-certified pediatricians don’t always suffice:
I am writing about our 3-year-old son, for whom we seek medical exemption from the DPT, MMR, and HiB. Two older siblings had severe reactions to these shots, with fever of 105,° sleeplessness, and swelling at the injection site. Until age 6 both kids had recurrent ear infections, for which tonsillectomy was proposed, while our youngest has not been immunized, and has no ear infections. We tried oral polio vaccine as an infant, which was followed by extreme irritability and insomnia that lasted for weeks. 6 months ago we repeated it, with the same result. Our pediatrician has written that he is at high risk for reacting adversely, but the judge ignored her. By State law, a letter from a licensed doctor stating medical reasons why he should not be vaccinated is sufficient. But the city guidelines give the Health Department final say, so we’ve ended up in court.11
Before their hearing, the mother obtained a second letter from another pediatrician, which the City Health Department similarly rejected:
The family history indicates epilepsy in the father and extensive allergies in the mother. The child displays a pattern of nervous system hyperactivity in response to foods, and was also sick for weeks after oral polio both as an infant and again recently. I strongly recommend against any further immunizations for this child, the risks of which outweigh any potential benefits for him or the general public.12