Critics are alarmed about a news article published on the front page of the New York Times and headlined: A Cure for Type 1 Diabetes? For One Man, It Seems to Have Worked.
Really? We all fervently wish for a cure for the devastation of diabetes, especially type 1 which starts in childhood. But the problem, savvy readers found, is that the report falls far short of reasonable standards for a global news organization to trumpet the “c” word — cure.
Dig into the 2,000-word piece and skepticism should be the watch word. That’s because reporter Gina Kolata focused on the earliest outcomes of a stem-cell treatment for type 1 diabetes undergoing clinical trials. So far, 17 patients have been treated. One patient, so far, has experienced positive results that have sustained for six months. The New York Times gave no clue about the outcomes for the 16 others.
The data on the study, though, has not been peer reviewed and published — it’s not close, because, as Kolata reported deep in her article, the research is expected to take at least five years more. Indeed, the patient she focused on was part of an early, safety study — not the major, more final clinical trial that leads up to data submission to regulators.
By the way, if the results of this clinical trial were truly boffo (a Hollywood promotional term that may be fitting for this approach to news reporting), wouldn’t the independent advisors overseeing the research be ethically obligated to recommend the study be stopped and the therapy be submitted for swift regulator review to maximize its medical benefit for all patients?
Further, as Gary Schwitzer — the expert founder and publisher of the watchdog HealthNewsReview — has observed, Kolata also skates over a major component of the diabetes stem-cell therapy she enthuses about. The patients who will rely on it also must take powerful prescription drugs to suppress their immune systems so they will not reject (attack) the injected stem-cells that help to produce life-changing insulin.
As Schwitzer emphasized, taking immunosuppressive drugs is a costly, invasive, and risky matter. The drugs, which patients would be required to take long-term, can leave patients vulnerable to a range of infections.
These medications, along with the stem-cell therapy, will be expensive — how much so is unknown because this treatment approach is in such an early phase.
But look closely at the Kolata story and there is a consistent element to it: It reports in glowing fashion on the dogged, admirable quest by Doug Melton, an eminent biology professor at Harvard, to battle type 1 diabetes. Kolata emphasizes his science pioneering and gives less emphasis to the reality that Melton started a company to advance his costly study.
The firm since was acquired for $950 million by Vertex Pharmaceuticals. Patients may wish to pay attention to this throwaway reference by Kolata to this drug maker:
“Like other companies, Vertex has enraged patients with high prices for drugs that are difficult and expensive to make.”
Does a singular news article merit critics’ rips? Yes, Schwitzer answers, because the New York Times occupies such a significant role in the news media establishment, with its reports circulated so widely. The dubious focus on such thin information, however, also is symptomatic of serious challenges for the medical establishment and journalists to provide credible reports to the public. As Schwitzer wrote:
“Kolata sometimes seems like the Times’ science journalism version of the Times’ former weapons-of-mass-destruction storyteller Judith Miller. In the diabetes story, as in other Kolata stories, there is a suggestion of an imminent weapon of mass destruction against a widespread disease. She wrote that the first subject in a small 17-person five-year trial ‘may be the first person cured of the disease with a new treatment that has experts daring to hope that help may be coming for many of the 1.5 million Americans suffering from Type 1 diabetes.’ Before one should project from an early result in one person to the hopes of 1.5 million Americans, it would help to learn something about what has been observed in the other 16 people in the trial. There was no such detail in the story, nor will there be reviewable details for others to scrutinize for some time since the touted result has not been published in a peer-reviewed journal.”
He also says, correctly, this:
“[I]t is the framing and the emphasis of the journalism by a leading science journalist at a leading newspaper that demands scrutiny. It has an impact on readers and on sick people that may cause harm by promoting false hope about extremely preliminary research.”
He also noted that Kolata has, among other things, promoted the wrong idea that a cancer “cure” was imminent — an assertion she was blasted for, and which was false then, and more than two decades later is still untrue. Kolata, according to her New York Times biography, has twice been involved in Pulitzer Prize-winning reporting, is the author of six best-sellers, and “studied molecular biology on the graduate level at M.I.T. for a year and a half and has a master’s degree in applied mathematics from the University of Maryland.”
In my practice, I see not only the harms that patients suffer while seeking medical services, but also the damages that can be inflicted on them by disinformation, misinformation, falsehoods, and the cruel practices by some in and out of the medical profession of providing false hopes to the seriously ill and injured.
As a nation, we have seen the destructive results when individuals with prominence spread inaccurate or not fully accurate information about the coronavirus pandemic. Hundreds of thousands of Americans, experts estimate, may have died or suffered grievous illness due to bad information disseminated during the pandemic and that kept them from taking up preventative steps, including face covering, distancing, and vaccination. Those who are willing to advance evidence-light ideas that are anti-science and counterfactual have become legion — causing huge harms to health care in this country.
The New York Times can and should do better — and we can push news outlets, public officials, and people we have influence with to do so, too. We can do this by becoming skeptical and savvy about medical and scientific information and insisting that public policy be driven by facts and evidence, in as complete and persuasive fashion as possible at a given moment.
Here’s another unacceptable and tragic aspect about Kolata’s article: Its awful timing. Congress is in throes of dealing with a major package pushed by Democrats and President Biden. Among its important elements would be curbs on Big Pharma’s price-gouging on insulin — a life changing and saving drug that has changed little but for which profit-hungry companies have made prices soar. Please, let no one have false hopes for fast resolution of type 1 or type 2 diabetes and a sudden drop in the huge need for affordable insulin. We need to do far better in treating this damaging illness that federal officials say 34.2 million Americans suffer with and is the seventh leading cause of death in this country