Immunotherapy researcher Jim Allison. Credit: MD Anderson Cancer Center
The story provides an overview of researcher Jim Allison and his role in developing the cancer immunotherapy treatment drug ipilimumab (also referred to as “Ippy”) that is used in treating some melanoma cases.
It is an interesting story, and holds the reader’s attention. However, while the story plays up the significant benefits ipilimumab can provide for some people (drawn heavily from one patient’s heartwarming success story), it also gives readers an unrealistic set of expectations. Ipilimumab doesn’t have the same benefits for all patients, and it can be both extremely expensive and cause significant adverse side effects. That doesn’t take anything away from Allison’s accomplishments, but it may mislead readers who are either battling with melanoma or who have loved ones facing a melanoma diagnosis.
We applaud Jim Allison’s work, and think it’s worthwhile to draw attention to what he has accomplished through his development of ipilimumab. However, we think it’s important to clarify the limitations of ipilimumab, as well as its potential. When many readers (or listeners) may be people who are desperate for treatment options that can give them hope, it’s critical that they receive a clear picture of what that hope may look like–and that it isn’t a cure-all.
The National Cancer Institute estimates that 76,380 people will be diagnosed with melanoma this year — that’s 4.5 percent of all new cancer cases. Overall, melanoma patients have a 91.5 percent survival rate — but that survival rate varies significantly depending on how far the cancer has developed before treatment begins: while 98.4 percent of patients with localized melanoma survive for at least five years, that number dips to 17.9 percent for patients whose melanoma has metastasized, or spread. In short, melanoma is both fairly common and very scary for both patients and their loved ones.
The story doesn’t address cost. Given that ipilimumab treatment can cost $120,000 (according to this 2012 paper in the journal Pharmacy & Therapeutics), and is not necessarily covered by insurance, that’s a significant oversight. A quick acknowledgement of the steep price tag would have made helped readers more fully understand what this treatment involves.
Benefits aren’t quantified. The story relates the experiences of one patient who went into full remission, and notes that “Each case is different, and using a patient’s own cells to destroy tumors won’t work in every patient or in every type of cancer.”
But it offers no information on how often ipilimumab results in complete remission, how often it causes tumors to shrink, how long it prolongs survival in patients, or how often it fails to work at all. For one patient, at least, it worked amazingly well — which is great. Without offering broader information about how well it works in larger populations, this could easily mislead readers into thinking it works for almost everybody. Yet, it doesn’t work for everybody — and even for patients that see benefits, it doesn’t always mean long-term remission (as the FDA noted in a news release about ipilimumab last year).
Harms are not mentioned, which is a significant oversight. We understand that this is a story about a man and his accomplishments in developing a tool to fight cancer. But to paint a full picture, you have to describe the tool. And it’s impossible to discuss ipilimumab without discussing either its cost or its potential harms. The manufacturer’s own website states that ipilimumab “can cause serious side effects in many parts of your body which can lead to death. These serious side effects may include: intestinal problems (colitis) that can cause tears or holes (perforation) in the intestines; liver problems (hepatitis) that can lead to liver failure; skin problems that can lead to severe skin reaction; nerve problems that can lead to paralysis; hormone gland problems (especially the pituitary, adrenal, and thyroid glands); and eye problems.”
Just as with costs of the drug, we don’t expect a story to offer a thorough inventory of potential adverse health effects, but failure to acknowledge them in any way is a significant oversight — particularly when they can be this severe.
The story mentions a clinical trial, but doesn’t describe it. Similarly, the story mentions that ipilimumab is currently on the market, but doesn’t address how or whether it has been successful in wider clinical use.
Again, we appreciate that this is as much a profile of a researcher as it is a conventional health story, but a little information would have gone a long way here. The story refers to the drug as a “lifesaver” and a “fourth treatment option” without backing that up.
The story quotes a former director of the National Cancer Institute, which is good. And the story clearly outlines Allison’s search for pharmaceutical industry partners to develop ipilimumab into a drug that can be used in clinical practice.
The story refers to other treatment options, including surgery, radiation and chemotherapy.
The story makes clear that ipilimumab is currently available for clinical use, marketed under the name Yervoy.
In a sense, the entire story revolves around the novelty of ipilimumab — particularly on the (then-novel) mode of action it uses to fight cancer in melanoma patients.
The story does not appear to rely on a news release at all.
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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John Galbraith Simmons
June 20, 2016 at 7:24 amNot sure this story deserved its “Satisfactory” label. My reading agrees that there was no disease-mongering. But a useful up-front disclaimer would have admitted that stories for a general audience enjoy conveying positive “news” about cancer, and that this story was not so much “news” as a story based on coincidence concerning hopeful developments in oncology.
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