Early results of T-cell therapy raised hopes for some leukemia patients, but immunotherapy for chronic lymphocytic leukemia is proving helpful only for a minority of those who receive it. In this story, an early pioneer patient shares the terrifying lows and ultimate high of his journey. While the use of a single patient anecdote in a news story is often a red flag for us, this patient’s perspective is uniquely engaging and informative. Even though he has benefited from the procedure, he details the significant side effects he faced and calls attention to the fact that most others with the disease have not fared as well. It’s not the cheerleading-type narrative that we often see with single-patient-focused stories. Overall the coverage provided a very human story interwoven with a bit of medical science.
This story about the emerging science of immunotherapy provides a vivid look inside the near-death complications for one man and the disappointment that only a minority of chronic lymphocytic leukemia patients go into remission after the experimental therapy in which each patient’s T-cells are engineered to attack their own disease. We would have liked more detail in places, but this story (and headline) helps the public understand the uncertain world of clinical research. “Thrilling, humbling and a bit of a let-down,” the patient called it – and that’s a great summary.
Although this therapy only exists for patients in clinical trials, we still think cost should have received more than a single word of attention. “The method is complex and costly,” the story stated. Our quick review identified a Wall Street Journal article suggesting that the cost could be as high as $500,000 per patient — roughly equivalent to a stem cell transplant.
The story’s focus on the anecdotal success story of one patient, Bill Ludwig, had the potential to confuse readers — since his experience was not typical. However, we think that the story managed to combine his real-life story along with some generalizable information on the treatment success in a straightforward fashion. The story includes these details:
Of the first 14 CLL patients given the T-cell therapy, four had their cancers disappear – including the first two, who are now about five years cancer-free. Four others got better but then their cancer progressed. And six had no response to the T-cell therapy.
In addition to those results, published last week in Science Translational Medicine, the Penn team has orally presented data for a total of 38 CLL patients. Cancer disappeared in nine (24 percent), and temporarily regressed in another nine.
We especially liked the last line, “They’ve never said ‘cured.’ But ‘cancer-free’ works for me.”
The patient, Ludwig, who was ultimately “cancer free,” suffered some serious complications. The story talks about these, but we would have preferred more discussion of the overall risks or harms and not just an anecdotal description.
Ludwig “suffered catastrophic side effects as his immune system went into overdrive,” the story stated. He had to spend time in intensive care with his organs failing. The story is silent on whether many or most patients who received the therapy suffered harms. Researcher Walter Urba says, “Everything we do in oncology is a risk-benefit balance.”
These clinical trials for T-cell therapy have enrolled a small number of patients nationally, so there is not the typical history of studies in thousands of people that might be available for other treatments. The story clearly describes the small number of subjects treated to date and provides absolute numbers in terms of success and failures of treatment. Researcher Walter Urba gives some context: “I suspect that over time we’ll have better T-cell therapies, maybe given with other immune therapies.”
There is no disease mongering.
The story quotes an expert who was not involved with the study. It contrasts statements the researcher made 4 years ago about the treatment with his thoughts following publication of the new findings — an interesting comparison.
However, we must rate the story Not Satisfactory here for its lack of discussion of funding for the study, which came in part from the pharmaceutical company Novartis. In addition, one of the study authors is a Novartis employee, and the expert mentioned above is a paid consultant to Bristol Myers Squibb, which is also developing immunotherapies.
The story does note that “pharmaceutical giant Novartis partnered with Penn, aiming to commercialize the breakthrough,” but the extent of commercial involvement in the study that’s discussed isn’t clear.
The story provides a bit of insight into the tough road that many patients with leukemia travel:
“The retired corrections officer from Bridgeton, N.J., was losing his decadelong battle with CLL when he agreed to try the novel therapy in August 2010. “I didn’t hesitate because I had no options left,” he recalled last week. “And also, these people at Penn had been so wonderful to me and my family for 10 years.”…..“CLL typically progresses more slowly than other types of leukemia, and may be held in check for years with chemotherapy.”
Since the story does at least mention one alternative approach — chemotherapy — we’ll give the benefit of the doubt. However, we would have preferred to see just a bit more information on alternative strategies. Single and combination drug therapies are available along with stem cell transplantation; these are all existing alternative to T-cell therapies.
The story is clearly about clinical trials only open to select patients.
The story explains how the T-cell therapy is novel.
The story shows independent reporting beyond any news release.