P

eople 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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  • This is my fifth year on immunotherapy, after being written off twice, and a fight for treatment.Please be cautious.Would you just give up?I didn’t, and I have been able to raise my young children,and contribute to society as a health care professional. I continue to live a very productive life. What you are saying,won’t make sense anymore if you get sick.I was not obese,inactive etc….mammogram couldn’t help me.please be thoughtful.

    • DJ – Keep up the fight! I am so happy immunotherapy is working for you. Your personal clinical trial is why cancer research continues despite the naysayers out there.

  • So I guess we should just give up? I understand and support the need for honest and open dialogue between patient and physician. (I don’t think this happens often enough.) However, everyone thinks they are going to be “the one” that has the miracle response. Without that belief, why would anyone seek treatment for a terminal illness? Let’s not rain on the parade of those that are seeking new and better treatments for cancer. Let’s also agree to not over-hype treatment expectations. Evidence is the key! The open sharing of real-world evidence. Lab and clinical trial results only get a new therapy to the market. The capture and sharing of real world evidence will be the key to honest dialogue. The only clinical trial that will truly matter to a patient is their own.

  • Agreed, but is it not true that the majority of cancer patients today die as a result of chemotherapy? And is this hype around chemo not fed by the pharma industries who pay oncologists commission to subscribe? Beware each cancer is different from the next, so 8% response across all cancers is an oversimplification. And at least around immunotherapies we are learning more every day in contrast to chemo and radio therapies.

    • Thank you.. my mother was recently diagnosed with cancer and as I am navigating info from so many places, I’ve noticed that there are more and more articles like this that shoot down immunotherapies and prop up chemo and radiation as the only ways. I always look behind the statement at the messengers motivations. Having taken a close look at the statistics, I agree that chemo and radiation appear to cause more death than they do help. It makes one wonder, especially when facing cancer with a loved one or ones self, why do doctors keep pushing chemo and radiation as the only options. They are both FDA approved but they don’t really work. The way its been explained to me by multiple doctors is that these techniques basically poison the host in hopes the poison kills the cancer before the host. I’ve read figures that suggest that chemo/radiation therapy have an over 80% failure rate. I’m terrified enough about possibly losing my mother and reading articles like this one doesn’t help because it sounds like the author is attempting to dissuade people from exploring these other methods and only offering the same old “poison the body and hope the cancer dies first’ option.

  • “For several common cancers, like colon and breast cancer, we already know that these drugs work poorly”. Immunotherapy drugs are real candidates for high microsatellite instability colorectal cancer. Yes, this is about 5% of patients, but this means 100.000s people every year worldwide.

    While I strongly agree with the hype in cancer industry, from mammography screening to misleading survival rates, and they are overhyping a biomedicine bubble to attract investors and money, immunotherapy is a vast field to explore. There are more checkpoints to come, oncovirus, vaccines, bacteria, citokines, immune editing via CART/CRISPR. In the next few years, we will have better management of drugs combinations and sequencing (learning to use chemotherapy took years in leukemia with great survival benefit every year), bioinformatics, side effects management, etc. There is investigation on every immune cell, from T cells to NK, dendritic cells, TAMs… Lets see where we are in the next 5-10 years.

  • Few? In the US, there are 600,000 deaths from cancer a year. If 10% benefit, that’s 60,000 people a year. “Few” ?

  • That’s a great analysis underscoring that we should be “humble” on the efficacy of any newly applied treatment. Certainly, the need to find bona fide biomarkers is imperative.

    However, most of the trials involving immunotherapy pertained to heavily pretreated stage IV patients; that equals to death sentence literally. Hence 8% is still an amazing number.

    Let’s wait for the current trials checking immunotherapy efficacy in less advanced stages.

    • About half of the 8% benefit comes from untreated patients with high PDL-1 NSCLC and Melanoma, so it was not only those refractory to other therapies.

  • You have to factor in the progress that’s been made since the 60’s, survival rates have been improving every decade and they continue to increase with the release of new therapies… Nobody is looking for a silver bullet in cancer research, it’s a slow process that takes decades but over that time, survival can be extended with research…

  • Shockingly poor statistics. ” we first calculated the percent of cancers for which immunotherapy has been approved as of February 2017″. Right off the bat they consider only “approved” indications. What about the indications that will be approved? Why does junk like this get published?

    • Good question. Immunotherapy is just beginning. Things like Checkpoint Inhibitors will work best in combo treatments with viruses IMO.

    • Unapproved indications are unapproved, but happy to indulge the experiment.
      If we include MSI-H CRC, the percent is still less than 10%.

    • Only 26% of patients saw their tumor shrink… those 26% were mostly highly refractory to existing therapies… these were people who were literally on their death beds… so I think it’s a very positive step for researchers.

    • To FR’s comment. About half of the 8% benefit comes from untreated patients with high PDL-1 NSCLC and Melanoma, so it was not only those refractory to other therapies.

      Agree, 8% is moving forward.

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