Reporting progress to a hopeful public

News articles underscore the ethical burden of balance shared by researchers, funders and the media

An Aug. 27 post on the New York Times blog “The New Old Age” reviews a book written for the increasing number of people who are finding out that they have Alzheimer’s disease, but years before the telltale signs of dementia are noticeable.

With knowledge about the basic biology of Alzheimer’s—as well as methods for detecting the disease—steadily improving, “there’s a push to diagnose at even earlier stages” and “to be more proactive,” said Murali Doraiswamy, a researcher on the aging brain at Duke University and co-author of The Alzheimer’s Action Plan.

36-Hour Day CoverBut the blog post begins by paying homage to The 36-Hour Day, the best-known guide to caring for someone with the disease, which was co-authored by geriatrician Peter Rabins, a core faculty member at the Johns Hopkins Berman Institute of Bioethics. Incidentally, Rabins had already been noticing an uptick in Alzheimer’s-related articles in the Times over the past two months.

A story on July 23 proclaimed that the activation of sirtuin, a protein found in human brains, may hold promise as a possible treatment. Another article attributed encouraging progress in the field of Alzheimer’s research to scientists, industry and the government working together—instead of seeking breakthroughs independently in the pursuit of profit or patents.

However, for all the hope signaled by recent headlines, there is still no cure. Indeed, a story in the Times that followed the succession of optimistic reports about Alzheimer’s served as a reality check: On Aug. 17, the newspaper reported that drug-maker Eli Lilly stopped late-stage clinical trials of an experimental treatment due to unexpected adverse effects. It quoted sources at the company and in the research community as being clearly disappointed by the significant setback.

“Most people in my field would probably say we’ve learned a tremendous amount about the basic biology of the disease. We know so much more now than we did five years ago. It’s amazing,” Rabins told the Berman Institute Bioethics Bulletin. “But at this point in time, that hasn’t benefited anybody.”

Beyond the headlines

For all the treatment strategies that researchers have identified to potentially stop the progress of Alzheimer’s disease, its precise cause remains unknown. The degenerative disease is the most common form of dementia and is the seventh leading cause of death in the United States, currently afflicting an estimated 5.3 million older Americans.

A diagnosis that someone has Alzheimer’s can only be confirmed by autopsy. The disease causes information transfer from one nerve cell in the brain to another—across the synapse—to fail. The number of synapses then decline and the cells decay, causing the brains of those with advanced Alzheimer’s to shrivel up and become littered with the debris of dead or dying neurons.

More than a century after the disease was first described by Alois Alzheimer, scientists still don’t know whether this debris—protein fragments called plaque and twisted strands known as tangles—causes the disorder or is the result of it.

The most common symptom at onset is a gradually increasing difficulty in remembering new information such as names or recent events. Other early signs include apathy and depression, followed later by impaired judgment, disorientation, confusion and irritability. Eventually, people with Alzheimer’s also lose the ability to speak, swallow and walk.

The vast majority of cases occur in those ages 65 and over, and women are more likely than men to be diagnosed with Alzheimer’s and other forms of dementia. It is thought that this gender gap is primarily because females live longer than men, increasing the time during which women can develop the disease. African-Americans and Hispanics are also more likely than whites to develop the disease.

Those with advanced Alzheimer’s need help with bathing, dressing, eating and using the bathroom. In the final stages, they lose the ability to communicate or recognize loved ones and require around-the-clock care. They become prone to infection, particularly pneumonia, and so most families reluctantly move them into a nursing home or other type of residence with professional care staff.

The Alzheimer’s Association estimates that Americans will spend a total of $172 billion this year to care for those with the disease, which includes the cost of regular, long-term and hospice care. An Aug. 26 report by National Public Radio says the disease threatens to bankrupt Medicare and Medicaid, as the number of Alzheimer’s patients multiplies to an estimated 16 million Americans by the year 2050.

Peter Rabins MD, MPH“Beyond human suffering, it’s a huge public health issue because it’s a very expensive disease,” says Rabins, a professor of psychiatry at the Johns Hopkins School of Medicine.

The U.S. Food and Drug Administration has approved five drugs that temporarily slow the worsening of symptoms, although the treatments tend be less effective after six months to a year. Currently, about 90 experimental therapies aimed at stalling or stopping the progression of Alzheimer’s are in clinical testing on human volunteers.

A shared ethical burden

Just as scientists, drug-makers and the government are coordinating the effort to advance findings that may one day lead to prevention or a cure, so do they all shoulder what Rabins considers to be one of the biggest ethical responsibilities owed to the public: presenting discoveries in proper perspective.

In that regard, the Times articles cited above repeatedly quote experts not involved with the research that was reported, alongside those who actually funded and carried out the work. With Alzheimer’s, a disease with an average life expectancy of seven years after diagnosis, it is especially important to inform but not overpromise.

“People are frightened of Alzheimer’s disease,” Rabins says. “You want to give people good news, and if you’re a researcher and you have a new finding, you want to trumpet it. And if you’re the National Institutes of Health, and you’re providing between $750 million and $1 billion a year in research support, you’d like the public and Congress to say, ‘Hey, we’re making progress with all that tax money.’”

Clearly communicating the caveats is even more important given that patients and families who live with—or in fear of—the disease are desperate for hope and will often gravitate towards the words “progress” and “treatment,” but gloss over phrases like “may represent” and “potentially significant.”

In Rabins’ opinion, journalists bear a burden in diseases like Alzheimer’s to provide balanced reports that convey both the promise and limitations of new findings. The dilemma, however, is that studies about negative findings are perceived as uninteresting and so are often not published, Rabins notes.

He adds that newspapers may need to be especially vigilant about reporting potentially promising news about Alzheimer’s research because raising false hopes has significant ethical and personal downsides.

For instance, in an Aug. 9 story in the Times titled “Spinal-Fluid Test Is Found to Predict Alzheimer’s,” a careful read of the article shows that the test actually detects signs of the disease. And while the first sentence of the story stated that the spinal tap was “100 percent accurate” at identifying patients who developed Alzheimer’s, Rabins says the article did not discuss how accurate the test is at predicting who won’t get the disease.

Rabins says the results of the actual study that the Times story was based on were reported in context. But the newspaper article didn’t necessarily present the wider context of uncertainty about the predictive value of the test.

“In my opinion, scientists have a greater burden than journalists, since they have a better understanding of the issues,” Rabins says. “They cannot dictate what journalists write, but they can make sure that they clearly state the limitations and negative findings every time they give an interview.”

~ Michael Pena

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Michael Pena
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