People with cancer face many challenges, including the symptoms of the disease, the toxicity of the treatment, financial costs, and social expectations. Here’s a new threat: navigating their care in an ocean of hype.

Cancer drugs are all too often hailed as miracles, breakthroughs, game-changers, or even cures, even when they are no such thing. We recently reported in JAMA Oncology that these words were used 50 percent of the time to describe drugs not approved by the FDA, and 14 percent of the time to describe drugs that had only worked in mice. The leap from helping a mouse to saving a human is uncertain, long, and overwhelmingly unsuccessful.

Even when we do have drugs that work, hype may mislead us about how well they work and how many people they will benefit.

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Consider immunotherapy. This new form of cancer therapy, which uses the body’s own immune system to fight cancer, has captivated the public imagination, is a topic of the nightly news, and has been featured in at least one Super Bowl ad.

When immunotherapy works, the result is terrific, even life-changing. Today, though, only a tiny minority of patients expected to die from cancer will benefit from immunotherapy. As is often the case, hype sadly exceeds evidence, creating misunderstandings between patients and their doctors.

Although immunotherapies have been used for a hundred years, such as the deliberate injection of bacteria into the body to stimulate the immune system, 2011 marked the approval of the first immunotherapy for cancer, a so-called checkpoint inhibitor named ipilimumab (Yervoy). This class of drugs unleashes the body’s immune system against cancer, and is the subject of much enthusiasm.

Using US national cancer statistics and FDA approvals, we estimated the percent of cancer patients who might actually benefit from immunotherapy. The result was surprising, given the way these drugs are described.

To do this, we first calculated the percent of cancers for which immunotherapy has been approved as of February 2017. From that number we determined that two-thirds (68.8 percent) of Americans predicted to die of cancer will die of one that currently has no FDA-approved immunotherapy options. These include prostate cancer, colon cancer, and ovarian cancer, among others.

Talia Bronshtein/STAT Source: Nathan Gay and Vinay Prasad

We next determined the percentage of cancer patients that could expect to see their tumor shrink from immunotherapy. Tumor shrinkage is widely considered to be a prerequisite to benefitting from these drugs. Only 26 percent of patients had this happen.

Finally, we combined those two calculations and asked, of all patients dying of cancer in America this year, how many might benefit from a checkpoint inhibitor drug? We assumed the best-case scenario: that every patient with one of these cancers could afford the drug and get access to it.

The answer was just 8 percent. We also ran the numbers another way by setting a lower bar for success, and credited these drugs for any patient whose cancer did not grow substantially during follow-up. Even with that adjustment, the estimate was less than 10 percent.

Talia Bronshtein/STAT Source: Nathan Gay and Vinay Prasad

What do these results mean? When immunotherapy works, there is no argument — the results are terrific. Patients with otherwise life-threatening cancers live far longer than expected and some may even be cured. But at least today, few patients can expect to be among the lucky ones.

Some argue that these drugs will be approved for more cancers in the years to come, or that they may work better in combination with other drugs or one another. While we hope that comes true, it is not the reality today. And for several common cancers, like colon and breast cancer, we already know that these drugs work poorly — there is a reason why the first approvals were in cancers like melanoma — and we fear the percentage of people benefiting from cancer immunotherapy will not change greatly.

Who is to blame for the disconnect between reality and hype? All of us. Doctors, researchers, the pharmaceutical industry, reporters, patient advocates — all use sensational language to describe these drugs. To make matters worse, the United States is one of the only countries to permit direct-to-consumer advertising, resulting in an astonishing 80 drug ads airing every hour — some of which are misleading.

We owe it to people with cancer to do better. Navigating the waters of accurate information and reasonable hope is a big challenge for oncology. Deciding when and how to treat cancer is a sacred journey that patients and their doctors make together. Distorting the effectiveness of treatments in the public eye can tear the very fabric that unites patients and doctors. Misunderstanding ensues. Expectations become disappointments. A good death becomes a bad one.

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The intrusive nature of hype — without context, without nuance, and without limit — can be a huge challenge faced by cancer patients in America. For that reason, it should come as no surprise that many cancer patients have an inflated understanding of their prognosis compared to what their doctors understand. Too many patients and their families are inevitably let down when they find themselves among the 90 percent who don’t benefit from immunotherapy.

We are not pessimists in our quest to improve survival and quality of life for cancer patients. Instead, we are optimists that we can all do better in communicating the reality of cancer care to patients, to the public, and even to physicians. That way, we may all make more honest choices if and when we must cope with cancer.

Nathan Gay, MD, is an oncology fellow at Oregon Health and Science University. Vinay Prasad, MD, is assistant professor in the Division of Hematology Oncology at Oregon Health and Science University and the author of “Ending Medical Reversal.” The views expressed in this article are the authors’ personal opinions and do not represent those of OHSU.

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  • http://www.seattlechildrens.org/clinics/cancer/research-and-clinical-trials/t-cell-therapy/

    My daughter has an Astrocytoma Glioblastoma grade 4 brain tumor in the CNS of her brain. A very life threatening and agressive tumor. She was diagnosed at 36 hours old. Her survival rate was supposed to be 2%. Her father & I were told she would pass in 7-10 days. We were offer treatment options for her back then. Radiation and Chemotherapy. Unfortunately if we chose to do that, there was not a guarantee she would : A; Survive & B; because at the time of diagnosis she was a newborn, Radiation & Chemo, would not only kill the cancerous cells, but her formable brain cells also. Disabling our child into retardation. She has made it to be 17 yro with no treatment other than what l introduce with a strict diet that helps fight cancer. Unfortunately my child is beginning to have cerebullar dysfunction symptoms. After 17 yrs. Thus, affecting all the involuntarily response we take for granted by not thinking about. Like temperature, heart rate, breathing, swallowing, and having balance. And petite mall seizures has started for her. I live in Seattle. We have on of the best childrens hospital in the Nation. To help fight childhood cancers. Specializing for those who cannot do surgery, or chemo or radiation. I saw this June of 2018 the FDA has approved clinical trial treatment. And l have to say, for my child, l am willing to do the CAR T CELL Treatment. To kill the HER2 cells affecting her. Now l read what this oncologist had to say. But when l had my child l was taking her to Portland’s OHSU cuz she was born in Vancouver, WA. An oncologist there, named Janis Olson, kept being pushy to have us to do radiation and chemo on our child. After we made the decision firmly to not. Then later l find out, these “Oncologist” at OHSU get a bonus….For every new patient, and long standing patient they treat with chemo or radiation. I was appalled. My child will be going to Seattle Children’s Hospital. She will receiving treatment. And l feel deep in my soul that it will work for her. And she will be well. I have the exact same feeling, when she was diagnosed to begin with and they said she would die. I never believed them then. I knew she would live. I carried her, felt her grow, l knew how strong my child was. And now that have can do a not as evasive treatment, intravenously and using her own immune cells with recumbinant DNA. We are willing to try and so is she. We have been waiting a long for something like this, and l hope it cures her brain tumor. Seattle Children’s Hospital is one of the top in the nation, and there survival rate is 5 yrs longer than any other hospital. They have held this record for over 20 yrs. And when l was taking my daughter to OHSU this is exactly the attitude l received. “Oh, your not going to do radiation or chemo, well there’s no other way.” Then please explain, cuz they even dubbed her a “miracle”, with healthy diet we were able to keep the tumor at bay for 17 yrs. And relatively speaking, for the most part my child has been pretty healthy. Until this recent year. I have posted Seattle’s website above.

    ~☆)●(☆~
    Blessed Be

  • My husband just passed away in June of non-small cell lung cancer. 14raditons,3 chemo treatments some had shank most stayed the same. I wish he had not moved to immunotherapy. Two of these treatments, in 3 weeks he was laying on life support. Which the lung specialist told me was from complications from immunotherapy. Would really like more info on research on deaths it causing. Thanks jennifer

  • In the year since this report, have there been any changes in success statistics for immunotherapy provided to patients with intransit recurring metastatic melanoma? Thanks.

  • I am a 14 year survivor of Stage IV kidney cancer, thanks to high dose interleukin 2, which is truly a foundation to much of the current immune therapies being used. The stats which led to its approval in 1991 for kidney cancer were promising for the time, and despite a mix of trial design issues that have limited its acceptance. Kidney cancer is resistant to stand radiation and the older chemotherapies, but the initial trial studies used the measures and standard of chemotherapies. For example, a tumor had to shrink 50% to be deemed a Partial Response. Current trials consider a 30% shrinkage to be a Partial Response, and there was no thought of the tumor neither growing nor shrinking, although that is no considered to be Stable Disease. As a patient who had 100s of tiny tumor in my lungs, I was desperate for them to stop growing, at least for some time. The idea of them shrinking away to nothing and never to return in these last 14 years is a miracle. That is the Holy Grail of immune therapy–to shrink or stabilize tumors that have endangered the basic functioning of the body, and to do for a long and durable period.
    The hype that accompanies these current reports comes from the unwillingness of the reporters and the readers–doctors and patients alike–to study the information given, and to understand the context of the studies. From there, the informed patient-physician team can make some reasonable guess about the best way to continue.

    Looking for a single magic elixer to stop the many disease processes we lump together as ‘cancer’ is futile. As a minimum, we need to stop framing these discussion about cancer as if it is one disease. It will take ongoing and intensive analysis of the many studies to give guidance, and a willingness to counter the hype that is far too welcome in the press and in medical journals.

  • Although I agree with the authors that using overly exciting terms to describe the success of cancer therapies is misleading, I take issues with some aspects of the analysis they present here.
    Diluting the success rate of immunotherapy over the total of cancer deaths is like making accountable an army for the losses recorded in a battle they didn’t have a chance to fight.
    A more accurate analysis (that clinicians often do), would be presenting the clinical outcomes of immunooncology drugs as compared to the standard of care. And this should be done for each disease individually. That would show that yes, most of the 42 phase 3 trials completed so far, have been conducted in lung cancer and melanoma, where improvements have been achieved.

  • My metastatic to the lungs cervical Adenocarcinoma cancer DOUBLED in size after a regimen of Opdivo!
    It is not all it’s cracked up to be!

    Did not see any information in contraindications to this possibility.

    • I feel for you! If you read my other replies, you will realize that you are not alone. Maybe Keytruda is possible. I am no oncologist, but most of the info on the internet shows Keytruda to be more succesful on most terrible cancers like we both have. I don’t pray, but I will continue to hope for you! Steve

  • This is not by any stretch of the imagination an accurate and balanced view of the benefits of immunotherapies. Especially in the case that there are no or limited alternatives to treatment, immunotherapies are showing to be extremely beneficial to patients, and in some cases have been proven to have higher efficacy than first line chemotherapeutic options.

  • I remember when they 1st started hyping the new AIDS drugs. I also remember reading articles almost exactly like this one. Just exchange the word cancer for AIDS and checkpoint for protease and the article reads almost the same. Today, almost everyone can expect to live a full life with the AIDS virus. The same will soon be true for many cancers. Even if we are only able to increase the percentage of people treatable by 1% per year, which does not sound like a lot, will be a lot when my son gets to the age where he is at high risk for cancer.

  • This article is a little unfair. Hype is something that happens often with new therapies for cancer. But immunotherapy holds enormous promise to improve the care of patients with cancer. Proof of concept has now been established. It is reasonable to think that these treatments will get better over time. Immunotherapy for cancer may well be revolutionary.

  • I am one of the 10 percent. Alive 10 months after completing the Juno CAR 17 T cell trial, the Chemo Induced Peripheral Neuropathy I suffered from when I began the trial has worsened to the point where I question whether the decision to participate in the trial was the right one. I agree the hype about immunotherapy helped to lure me to do the trial. My cancer had relapsed 3 times and and I had run out of options. Little did I know how much suffering would come from finally being in remission. I caution these researchers and drug companys to slow down and make sure their procedures are really ready before they use them on human beings. In my case the treatment destroyed the cancer cells so far, but also is in the process of destroying my sensory nerves making my pain at times unbearable.

    • No longer one of the 10 per cent. Relapsed right after my post. Waiting to start Keytruda. Big question for these new CAR T cells-how long do they work? In my case 10 months or less for new tumors to surface.

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