The story was peppered with sensational descriptions (“amazing,” “phenomenal,” “fantastic,” etc. ) that attest to the electrifying possibilities of the new treatment, which involves infusing patients with a virus that will reprogram their immune systems to fight cancer. But there was no independent voice to deliver any sober admonishment about a treatment that’s only been tested on a dozen people.
This story would have been much stronger without the drama and with more cautionary information. Without longer term follow up, we have no idea what the future holds for these patients.
The experimental treatment being reported on here, which recruits the patient’s own immune system to selectively target cancer cells, represents an interesting new area of research with exciting preliminary results in a few patients with untreatable cancers. Even scientists can get caught up in the excitement surrounding this kind of research, which makes it incredibly important for journalists to dispassionately present a balanced take on the findings, including strengths and weaknesses, benefits and harms. Stories that don’t take this responsibility seriously risk inspiring false hope in people desperate for positive news.
The study addresses costs nicely, noting that any commercial treatment resulting from this research will probably be very expensive. It notes that other targeted cancer treatments cost more than $5,000 a month. And it provides the estimate of experimental cost ($20K per patient).
We think the story leaves readers with an improbably rosy portrait of the experimental treatment’s benefits. Here’s why:
The story describes some of the adverse effects of treatment in great detail, and mentions that patients treated successfully have compromised immune systems and must undergo ongoing therapy with immunoglobulins. The story could have noted that we have little idea what kind of long-term challenges these patients might face as a result of the alterations made to their immune systems.
We acknowledge the detailed reporting on the science behind the treatment and the intricacies of this particular case–a fascinating account. However, we think the story was out of balance. The story’s few caveats (“The research is still in its early stages, and many questions remain.”) are overshadowed by the rampant enthusiasm described above in the BENEFITS criterion comment. There’s certainly plenty to get excited about, but success in a handful of research patients doesn’t necessarily portend success in the real world. We think health stories have an obligation to temper researchers’ excitement with some sober reality. Nonetheless, we’ll give the story the benefit of the doubt on this criterion, since we’ve already addressed the perceived imbalance elsewhere.
While certainly a terrible disease, acute lymphoblastic leukemia is a treatable cancer. The 5-year survival rate (percentage of patients who live at least 5 years after their cancer is diagnosed), is more than 85%, according to the American Cancer Society, and many patients who survive that long are considered cured because relapse is rare. This story focused on one of the worst case scenarios, and didn’t provide readers with this larger perspective.
The competing Philadelphia Inquirer story at least briefly referenced the 85% estimate.
Several independent experts are quoted in the story, although their input is used primarily to reinforce the “breakthrough” nature of the findings. The story could have gotten a lot more mileage from these sources had it probed more for limitations, caveats, and concerns about the research and its application to larger numbers of patients. The story also noted Novartis’ investment in the work, something not mentioned in the competing Philadelphia Inquirer story.
The story mentions chemotherapy and bone marrow transplants as other treatment options for leukemia.
It’s clear that this treatment is not widely available and won’t be any time soon. As a service to patients and parents who might be in desperate straits, the story could have provided some information about research plans for the experimental treatment and the possibility (or lack thereof) of enrolling in a study.
The story reports on the first use of the treament on a child with acute lymphoblastic leukemia–certainly a novel application. While focusing on the U Penn work, the story explains that “Similar approaches are also being tried at other centers, including the National Cancer Institute and Memorial Sloan-Kettering Cancer Center in New York.”
There is enough original reporting that we can be sure the story didn’t rely on press release.
Systematic, Criteria-Driven
Monday at #ADA2021, an infectious disease epidemiologist, a journalist, and a researcher shared perspectives on communication of risk in the era of COVID-19: http://ow.ly/ROfR30rMeE7 @AstleyCM @garyschwitzer @berthahidalgo @ADA_DiabetesPro
Shoutouts to @susan_bewley @drkevinknopf @MichaelBaum11 in this call for more than fawning coverage from press releases for these kinds of stories.
Also, linked history inside goes back 5 years just on Grail apparently trying to become Holy Grail. https://twitter.com/garyschwitzer/status/1408849696416841731
Comments (1)
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Bruce Levine
December 13, 2012 at 7:23 amThank you for your review. A few comments for the record.
1. On quantification of benefits bullet point 4
The patients who have been in remission for 2 years have no detectable cancer with the most sensitive assays available. This is also the case for the child reported on in the story. Of course, undetectable does not mean zero.
The treatment is composed of T cells carrying a chimeric receptor targeted against a marker on B cells and B cell leukemias. The T cells are dividing, which distinguishes this “drug” from any other drug. Data from NIH and European clinical trials of gene-modified T cells in Adenosine Deaminase Deficiency shows that T cells or their progeny can persist for decades. Our own work with gene modified T cells in HIV also shows that chimeric receptor modified T cells can persist for a decade or longer (Scholler, Science Translational Medicine 2012). So, it is correct to say that that the treatment MAY only need to be given once, MAYBE only once or twice or three times and that this can provide lasting immunity to cancer.
References
Muul, L. M et al. 2003. Persistence and expression of the adenosine deaminase gene for 12 years and immune reaction to gene transfer components: long-term results of the first clinical gene therapy trial. Blood. 101: 2563-2569 and L. Muul personal communication
Aiuti, A., et al. 2009. Gene therapy for immunodeficiency due to adenosine deaminase deficiency. N. Engl. J. Med. 360: 447-458.
Gaspar, H. B., et al. 2011. Hematopoietic stem cell gene therapy for adenosine deaminase-deficient severe combined immunodeficiency leads to long-term immunological recovery and metabolic correction. Sci. Transl. Med. 3: 97ra80
Scholler, J., et al. 2012. Decade-long safety and function of retroviral-modified chimeric antigen receptor T cells. Sci. Transl. Med. 4: 132ra53
2. On disease mongering
The investigational therapy is only open to patients with relapsed and refractory leukemia, the 15% who do not respond to conventional therapy. The child in the story has relapsed twice and had subsequently received a 3rd course of intensive chemotherapy to which she did not respond. Reference: clinicaltrials.gov NCT01626495
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