TIME medicine

Whistleblower Claims CDC Covered Up Data Showing Vaccine-Autism Link

The claim, however, may just be more unsubstantiated fuel from the anti-vaccination movement

If you haven’t noticed, there’s a war going on between those who believe in the health benefits of vaccines – that they can prevent deadly infectious diseases such as measles and polio – and those that believe that the immunizations do more harm than good. Now one of the authors of a 2004 government study that found similar vaccination rates among children with and without autism says the study omitted some important data.

The vaccine war is being fought on social media, in social circles and increasingly in doctor’s offices, as physicians are faced with doubts and questions from parents who find themselves being recruited onto the side of skepticism. Skepticism is healthy, and the sign of curious minds, but not when it flies in the face of evidence. Especially gold standard, rigorous scientific evidence that has been accumulating for decades and shows that vaccines are not linked with an increased risk of the developmental disorder.

William Thompson, a senior scientist at the Centers for Disease Control (CDC) and one of the authors of a 2004 study published in the journal Pediatrics, spoke with Brain Hooker, who serves on the board of Focus Autism (which was founded to “put an end to the needless harm of children by vaccination and other environmental factors”), about the data that was not included in the final report. The study looked at both healthy children and those with autism, to see if there were any differences in their rates of being vaccinated against measles, mumps and rubella (MMR), and found none. That suggested that childhood immunizations likely were not contributing to an increased risk of autism. Hooker and Thompson, however, discussed a subset of the 624 children with autism and 1824 without the condition who were studied and Thompson admitted that among African-American boys, the incidence of autism was higher among those who were vaccinated than among those who weren’t. But that information was not part of the paper. Thompson claims he was not aware that the discussion was being recorded, and his statements appeared in a video released on YouTube on August 22 entitled “CDC Whistleblower Revealed.”

Did the CDC cover up the data, as Hooker claims? A couple of things to keep in mind, both about the people behind the video and about how epidemiological studies like the one published in Pediatrics work (and explained in more detail in this article from Science-Based Medicine). For starters, the video was narrated by Andrew Wakefield, the British researcher responsible for seeding the questions about vaccines and autism in the first place. In 2010, the General Medical Council in the UK revoked his license to practice medicine and a year later, the journal that published his paper concluded that his findings were fraudulent.

Next, any time scientists take the original population of participants in a study, however large, and drill down to analyze trends in a subgroup – in this case the African-American boys – the power of the associations they find dwindles. That’s because the numbers get smaller, and in order to be statistically relevant – something known as statistical significance to statisticians – certain threshold numbers and confidence intervals for the connection have to be reached. In the 2004 study, the scientists looked at a smaller set of 355 children with autism and 1020 without for whom they had Georgia state birth certificates, which included additional information that might be relevant for any associations, such as birth weight, gestational age, and mother’s age, race and education. “This information was not available for the children without birth certificates; hence the CDC study did not present data by race on black, white or other race children form the whole study sample. It presented the results on black and white/other race children from the group with birth certificates,” the CDC notes in a statement responding to the video. Thompson claims that the findings were statistically significant, but results from smaller numbers of subjects still don’t hold as much weight as correlations found in the larger group.

In addition, it’s important to note that the study simply correlated age at vaccination and reports of autism, which says nothing about the direction of the connection. For example, the authors of the 2004 study note that “Case children, especially those 3 to 5 years of age, were more likely than control children to have been vaccinated before 36 months of age.” The association between vaccination and symptoms, however, was more likely due to the fact that the children had to be immunized in order to register in preschool, and doesn’t necessarily indicate that the shots contributed to the autism.

In a statement issued through his attorneys, Thompson says “Reasonable scientists can and do differ in their interpretation of information.” He calls for transparency in the data collecting and reporting process, but says that the way that the 2004 study was presented does not negate the importance of vaccination. “I want to be absolutely clear that I believe vaccines have saved and continue to save countless lives. I would never suggest that any parent avoid vaccinating children of any race. Vaccines prevent serious diseases, and the risks associated with their administration are vastly outweighed by their individual and societal benefits.”

TIME medicine

When Will I Die? How I Decided Whether to Test for Early-Onset Alzheimer’s

The author bakes cookies with his 3-year-old twins
The author bakes cookies with his 3-year-old twins Courtesy Matthew Thomas

The disease killed my father. At 39, I had to choose how much I wanted to know about my own fate

People ask me all the time if I want to find out how and when I’m going to die. But that’s not exactly how they ask it. What they ask is whether I’m going to get tested for the gene associated with early-onset Alzheimer’s disease. It’s hard, though, to miss the subtext in the question: How morbidly curious are you? How much terror can you withstand?

I don’t blame them. These friends know I’m 39 and that my father started showing symptoms of Alzheimer’s in his early fifties (and possibly earlier). They know that after a handful of difficult years my father was diagnosed when I was a freshman in college and that he died less than a decade later. They wonder if I’m going to take advantage of the remarkable opportunity science affords us to uncover our genetic destinies and plan accordingly.

Modern life is all about making us forget we’re capable of dying. We love to feel in control of our mortality, even if we understand that that control is only an illusion. Alzheimer’s disease is the opposite of modern life. It’s the ascendancy of entropy and chaos.

My father’s disease had a devastating effect on our family. It didn’t just take away our time with him and his with us. It also took away his time with the not yet conceived children who would populate the family in his absence. He would have been in his 70s now, surrounded by three grandchildren through my sister and two through my wife and me. It’s painful to know what a resource he would have been for them and how much they’ve lost. He will live, faintly grasped, if at all, only in stories.

When he was still living, we tried to make the best of the situation. When my sister got married, my mother brought my father’s tux to the nursing home and had the staff dress him in it. After the ceremony, while everyone else headed to the reception, two limos carrying my immediate family took a detour to the nursing home for photos.

When I look at the framed shot of us huddled around my father in his wheelchair, I see how hard my sister is trying to keep her emotions in. She’s smiling big, but tears are streaming down her face. We are all smiling hard, though there’s no driving off the pain and awkwardness of the moment. Everyone’s looking at the camera except my father, who is gazing vacantly the other way, his mouth hanging open. Moments later we drove to the reception, leaving him behind, feeling terrible for doing so. I wanted him not to understand a thing that was happening in that scene, but you never knew what he knew.

For most of my youth, my father seemed to know everything. A universe of information swirled around in his brain. I could hardly put a question to him that he couldn’t answer. The rare times he came up short, he pulled me into his study, took a book off the shelf, lay it on the desk and stood flipping through it with me. I think sometimes he pretended not to know things just so that we could look them up together.

Once, when I was about 10 and my sister about 14, we were walking with my father on the outskirts of his old neighborhood. He stopped in front of a town house and told us Winston Churchill’s mother was born there.

“The iconic English statesman of the century!” he said. “A mother from Brooklyn!” He gave us a look almost wild with the significance of what he was about to say. “The wit!” he said. “The chutzpah! That was the Brooklyn in him!”

Three decades later, I can still remember the moment, bathed in that ethereal light that we reserve for our happiest memories. Why do I remember it, though? How did such a quotidian moment burrow its way into my consciousness and survive? Was it the juxtaposition of incongruous worlds, England and Brooklyn? I don’t think so. I think it was the joy my father took in sharing his knowledge with us.

My father would have loved my twin children. They’re 3 years old and full of vitality and personality. My son is unusually strong for such a skinny kid, and remarkably agile. He climbs whatever is available, with a monkey’s speed. When he sits at the piano and pounds the keys, it sounds as if he’s playing a real song. My daughter is a sensitive cuddler who remembers everything. “Daddy, is this from the hotel we stayed at?” she asked the other day, handing me a pad from a Marriott where we stayed six months ago.

Recently my daughter came into our bed in the early morning, lying between my wife and me, and started in on iguanas. “Iguanas are baby alligators,” she said, and I chuckled at the powers of observation of a developing mind. “Can iguanas learn to open doors?” she asked, and after I offered the opinion that they couldn’t, I pulled her close, gave her kisses and began to choke up.

Maybe when my twins are older, science will have caught up to this disease. We have the best scientific minds working on the problem of Alzheimer’s. Much like the search for the cure for cancer, there is a massive payout at the end of the rainbow for anyone who comes up with a solution. If there’s anything to put one’s faith in in the health care system, it’s that the confluence of genius and capital will, in this case, produce the outcome if the outcome is producible. And I do believe it’s producible. But if it isn’t produced in time, no amount of awareness of my fate, if it is to be my fate, is going to forestall its unfolding on me.

My wife and I have little battles over my forgetfulness. She asked me to fix the kink in the hose that runs from the humidifier in our basement to the French drain. A few days later, she gave up and fixed it herself. We had a grill delivered for our backyard, and the flame kept going out on it as soon as we lit it. I was supposed to call about it the next morning, but I’d more or less forgotten that we’d bought a grill in the first place when I heard my wife on the phone with the store. These aren’t terrifying signs in themselves — everyone is a little forgetful occasionally — but they make me pause enough to wonder if the worst is coming.

I’m built like my father, I sound like him, and if I have a genetic mutation in one of three genes that are all variations of the apolipoprotein E gene, then I will likely develop early-onset Alzheimer’s like him. These genes are rare, accounting for only 1% to 5% of all Alzheimer’s cases. But if I inherited the mutation from my father, then I will probably get the disease.

My grandfather — my father’s father — died relatively young of other causes, so there’s no saying whether he would have gotten early-onset Alzheimer’s. No one else in the family had it that we know of. I have as good a chance of getting familial Alzheimer’s as I have of avoiding it. Genetic testing would settle the question for good.

But what would I gain by knowing I was getting Alzheimer’s? I wouldn’t gain another day with my family. I wouldn’t gain a leg up on planning. My wife and I have taken care of practical considerations. We have wills. My wife has a durable power of attorney that enables her to make decisions on my behalf. Every policy, every asset, is in both our names. We opened college savings accounts for the kids. I’m working hard on my next book. How much more could I prepare?

After some deliberation, I’ve decided not to get genetic testing done. Instead, I’m going to try to live every day as if I know that I’m dying. The fact is, we are all dying. If I try to wring the most I can out of every moment, if I set aside time every day that my wife and I keep as inviolate as possible, if I give my wife and children quality interactions whenever we’re in the same room, if I leave the smartphone on the counter and realize there is no information more important than the information I get in my interactions with my loved ones, then how different is any of that from what I’d do if I knew I was getting Alzheimer’s?

Scientific studies suggest that my children are at just the age when they can begin to form lasting memories of their experiences. If I’m aware that I’m going to be gone someday and I consider it possible that that day will come far sooner than I’d like, then I want them to grow up not only knowing their father well but also knowing that they are well loved. I want to get in better shape for them, because I’d like them to see what a truly vital father looks like. And I’ve decided to read to them whenever they ask, if I possibly can. I don’t have any memory of my father telling me, “No more books” at bedtime. I will forever picture him with an arm around me, holding a book out before me, showing me the world.

Thomas is the author of the debut novel, We Are Not Ourselves, out today.

TIME Healthcare

One Patient, Too Many Doctors: The Terrible Expense of Overspecialization

Doctored, by Sandeep Jauhar
Doctored, by Sandeep Jauhar Courtesy Farrar, Straus and Giroux

As physicians become more specialized, our health care system becomes increasingly costly, sloppy and disorganized

Not long ago, a primary-care physician called me about a patient with a right-lung “consolidation” — probably pneumonia, though a tumor could not be excluded — that a lung specialist had decided to biopsy. My colleague wanted me to provide “cardiac clearance” for the procedure.

“Sure, I’ll see him,” I said, sitting in my office. “How old is he?”

“Ninety-two.”

I stopped what I was doing. “Ninety-two? And they want to do a biopsy?”

My colleague, who is from Nigeria, started laughing. “What can I tell you? In my country we would leave him alone, but this is America, my friend.”

Though accurate data is lacking, the overuse of health care services in this country probably costs hundreds of billions of dollars each year out of the $3 trillion that Americans spend on health. This overuse is driven by many forces: “defensive” medicine by doctors trying to avoid lawsuits, a reluctance on the part of doctors and patients to accept diagnostic uncertainty (thus leading to more tests), lack of consensus about which treatments are effective, and the pervading belief that newer, more expensive drugs and technology are better. However, perhaps the most important factor is the overspecialization of the American physician workforce and the high frequency with which these specialists are called by primary-care physicians for help.

The past half-century has witnessed great changes in American medicine. One of the biggest shifts is the rise of specialists. In 1940, three-quarters of America’s physicians were general practitioners. By 1960 specialists outnumbered generalists, and by 1970 only a quarter of doctors counted themselves general practitioners. This increase paralleled an equally dramatic rise in medical expenses, from $3 billion in 1940 to $75 billion in 1970.

Specialist-driven care has now become a fact of medical practice. In the past decade, the probability that a visit to a physician resulted in a referral to a specialist has nearly doubled, from 5% to more than 9%. Referral rates to specialists are estimated to be at least twice as high in the U.S. as in Britain.

The consequences for patients are troubling. Besides high costs, having too many consultants leads to sloppiness and disorganization. As Drs. Donald Berwick and Allan Detsky recently wrote in the Journal of the American Medical Association, inpatient care at hospitals has become a relay race for physicians and consultants, and patients are the batons.

I remember a 50-year-old patient of my Nigerian colleague who was admitted to the hospital with shortness of breath. During his monthlong stay, which probably cost upward of $100,000, he was seen by a hematologist; an endocrinologist; a kidney specialist; a podiatrist; two cardiologists; a cardiac electrophysiologist; an infectious-disease specialist; a pulmonologist; an ear, nose and throat specialist; a urologist; a gastroenterologist; a neurologist; a nutritionist; a general surgeon; a thoracic surgeon; and a pain specialist. The man underwent 12 procedures, including cardiac catheterization, a pacemaker implant and a bone-marrow biopsy (to investigate only mild anemia). Every day he was in the hospital, his insurance company probably got billed nearly $1,000 for doctor visits alone. When he was discharged (with only minimal improvement in his shortness of breath), follow-up visits were scheduled for him with seven specialists.

This case — in which expert consultations sprouted with little rhyme, reason or coordination — reinforced a lesson I learned many times in my first year as an attending physician: in our health care system, if you have a slew of specialists and a willing patient, almost any sort of terrible excess can occur.

What to do about this overspecialization? One option is accountable-care organizations, an idea put forward by the Affordable Care Act, in which teams of doctors would be responsible (and paid accordingly) for their patients’ clinical outcomes. This would force specialists to coordinate care. Unfortunately, most doctors, notoriously independent and already smothered in paperwork, have generally performed poorly in this regard.

Reforms will also have to focus on patient education. Medical specialty societies recently released lists of tests and procedures that are not beneficial to patients. By using these lists, cardiologists have been able to decrease their use of imaging tests by 20%. Better-informed patients might be the most potent restraint on overspecialized care. A large percentage of health care costs is a consequence of induced demand — that is, physicians persuading patients to consume services they would not have chosen had they been better educated. If patients were more involved in medical decisionmaking, there would be more constraints on doctors’ behavior, decreasing the possibility of unnecessary testing. This could serve as a potent check on what the doctor ordered.

Today roughly 1 of 6 dollars spent in America goes toward health care. If we do not succeed in controlling these costs, they will gradually crowd out other necessary societal expenditures. Improving health literacy will be critical to these efforts. Without a better understanding of what doctors are actually doing, one may end up like the patient who had 17 consultants and 12 procedures and who reinforced a further lesson I have learned many times since entering practice: when too many specialists are involved in a case, the result too often is waste, disorganization and overload.

Jauhar is a cardiologist and the author of Intern: A Doctor’s Initiation and the new memoir, out today, Doctored: The Disillusionment of an American Physician

TIME medicine

These Mummified Cadavers Helped Teach Medical Students in the 1800s

The Burns Collection consists of human cadavers from the early 1800s that were anatomically dissected and preserved to teach anatomy and surgery to medical students. For the first time this portion of the collection is on display to the public as a part of traveling exhibit "Mummies of the World: The Exhibition."

TIME Infectious Disease

Second American Infected With Ebola En Route to U.S.

Emory Hospital To Receive American Ebola Patients From Liberia
Dr. Bruce Ribner, an epidemiologist and professor in the School of Medicine's Infectious Diseases Division, confirms that Emory University Hospital will be receiving two American patients diagnosed with Ebola virus on Aug. 1, 2014, in Atlanta. Jessica McGowan—Getty Images

Although hospital officials haven't released the patient's identity, the aid group she was working with has identified her as 59-year-old Nancy Writebol

(ATLANTA) — The second American aid worker recently diagnosed with Ebola in west Africa is en route to Atlanta.

A chartered plane specially equipped to contain infectious diseases took off at 1:12 a.m. local time (9:12 p.m. EDT Monday) from the airport in Liberia’s capital, Monrovia. An Associated Press reporter saw the four-vehicle convoy arrive at the airport.

Although hospital officials haven’t released the patient’s identity, the aid group she was working with has identified her as 59-year-old Nancy Writebol.

Writebol will be treated at a special isolation unit at Emory University Hospital in Atlanta. Dr. Kent Brantly was taken to the unit Saturday after arriving from Liberia aboard the same aircraft.

Brantly and Writebol contracted Ebola while treating patients at a missionary clinic in Liberia.

Both are being treated with an experimental drug never tested for safety in humans.

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