$3.7 million to study quack medicine at a leading cancer center

Sometimes I'm not sure whether the best response to pseudoscience is to ignore it, or to patiently try to explain why it's wrong, or to get mad.

This week I'm mad.

My anger and frustration was triggered by a tweet from Memorial Sloan-Kettering's Integrative Medicine account, shown here:

For those who don't know, Memorial Sloan-Kettering Cancer Center is one of the world's leading cancer centers, both for treatment and research. If you are diagnosed with cancer, MSK is one of the best places to go.

But not everything at MSK is world class. Unfortunately, they have an "integrative medicine" center that offers a mixture of therapies ranging from helpful to benign to useless. One of their biggest activities is acupuncture, which they claim offers a wide range of benefits to cancer patients.

The MSK tweet shown here was boasting about a new, $3.7 million study funded by NIH to study the effect of acupuncture on pain that cancer patients experience from chemotherapy and bone-marrow transplants.

Here's why I'm mad: cancer patients are extremely vulnerable, often suffering the most frightening and difficult experience of their lives. They are completely dependent on medical experts to help them. When a place like MSK suggests a treatment, patients take it very seriously–as they should. But they really have no choice: a cancer patient cannot easily look for a second opinion, or switch hospitals or doctors. Even if they have the money (and cancer treatment is extremely expensive), switching hospitals might involve a long interruption with no treatment, during which they could die, and it might also involve traveling far from their home.

Offering these patients ineffective treatments based on pseudoscience–and make no mistake, that's what acupuncture is–is immoral. Now, I strongly suspect that the MSK's "integrative medicine" doctors sincerely believe that acupuncture works. Their director, Jun Mao, is clearly a true believer, as explained in this profile of him on the MSK website. But that doesn't make it okay.

I've written about acupuncture many times before (here, here, here, and here, for example), but let me explain afresh why it is nonsense.

Acupuncture is based on a pre-scientific notion, invented long before humans understood physiology, chemistry, neurology, or even basic physics, which posits that a mysterious life force, called "qi," flows through the body on energy lines called meridians. As explained in this article by MSK's Jun Mao:

"According to traditional Chinese medicine ... interruption or obstruction of qi was believed to make one vulnerable to illness. The insertion of needles at specific meridian acupoints was thought to regulate the flow of qi, thus producing therapeutic benefit."

Today we know that none of this exists. There is no qi, and there are no meridians. In that same article, Jun Mao continued by admitting that

"the ideas of qi and meridians are inconsistent with the modern understanding of human anatomy and physiology."

And yet this is what they offer to patients at MSK.

Just to be certain, I read one of the latest studies from MSK, published early this year, which claims to show that acupuncture relieves nausea, drowsiness, and lack of appetite in multiple myeloma patients who were going through stem cell transplants.

It's a mess: totally unconvincing, and a textbook case of p-hacking (or data dredging). The paper describes a very small study, with just 60 patients total, in which they measured literally dozens of possible outcomes: overall symptom score at 3 different time points, a different score at 3 time points, each of 13 symptoms individually, and more. I counted 24 different p-values, most of them not even close to significant, but they fixated on the 3 that reached statistical significance. The two groups of 30 patients weren't properly balanced: the sham acupuncture group started out with more severe symptoms according to their own scoring metric, and Figure 2 in the paper makes it pretty clear that there was no genuine difference in the effects of real versus sham acupuncture.

But they got it published (in a mediocre journal), so now they point to it as "proof" that acupuncture works for cancer patients. This study, bad as it is, appears to be the basis of the $3.7 million NIH grant that they're now going to use, they say, in "a larger study in 300 patients to confirm these previous findings."

And there you go: the goal of the new study, according to the scientists themselves, is not to see if the treatment works, but to confirm their pre-existing belief that acupuncture works. Or, as one scientist remarked on Twitter, "they already have a result in mind, the whole wording of this suggests that they EXPECT a positive outcome. How did this get funded exactly?"

Good question.

So I'm mad. I'm mad that NIH is spending millions of dollars on yet another study of a quack treatment (acupuncture) that should have been abandoned decades ago, but that persists because people make money off it. (And, as others have explained in detail, acupuncture is actually a huge scam that former Chinese dictator Mao Zedong foisted on his own people, because he couldn't afford to offer them real medicine. For a good exposé of Chairman Mao's scam, see this 2013 Slate piece.)

But I'm even more upset that doctors at one of the world's leading cancer centers are telling desperately ill patients, who trust them with their lives, that sticking needles into their bodies at bogus "acupuncture points" will relieve the pain and nausea of chemotherapy, or help them with other symptoms of cancer. I'm willing to bet that most MSK doctors don't believe any of this, but they don't want to invest the time or energy to try to stop it.

(I am somewhat reassured by the fact that MSK's Twitter account has nearly 75,000 followers, while it's integrative medicine Twitter account has just 110.)

Or perhaps they are "shruggies": doctors who don't believe in nonsense, but figure it's probably harmless so they don't really object. To them I suggest this: read Dr. Val Jones's account of how she too was a shruggie, until she realized that pseudoscience causes real harm.

And finally, let me point to this study in JAMA Oncology from last year, by doctors from Yale, which looked at the use of so-called complementary therapies among cancer patients. They found that

"Patients who received complementary medicine were more likely to refuse other conventional cancer treatment, and had a higher risk of death than no complementary medicine."

And also see this 2017 study from the Journal of the National Cancer Institute, which found that patients who used alternative medicine were 2.5 times more likely to die than patients who stuck to modern medical treatments.

That's right, Memorial Sloan-Kettering: patients who use non-traditional therapies are twice as likely to die. That's why I'm mad. This is not okay.

Bad news flash: scientists did not cure autism, cancer, or Alzheimer's

This week I'm calling out some recent headlines about medical "breakthroughs" that were wildly misleading. Even when the science itself is good, bad reporting raises false hopes and eventually undermines the public's confidence. At some point, people will just no longer believe the headlines claiming that someone has once again cured cancer.

My first example of bad news is from a couple of weeks ago. I was struck by a headline that showed up in one of my news feeds that read

"Neuroscientists reverse autism symptoms"

Wow, I thought. This would be a real breakthrough if it were true. I traced the headline back to the MIT press office, where I then saw the subheading: "turning on a gene later in life can restore typical behavior in mice." Uh oh: extrapolating any treatment from mice to humans is fraught with problems, and studying a complex behavioral disorder like autism is even more difficult.

The HuffPo fell for it, though. Their headline read "Some Autism Symptoms May Be Reversed By Gene Editing, Scientists Suggest". So did the Daily Mail, which went with this headline:

"Reversing autism 'at the flick of a switch': 'Turning on' a single gene in mice has been found to reduce autistic behaviours"

At least they mentioned mice in the headline. But then they wrote that “scientists have announced a major breakthrough in treating the genetic cause of the spectral condition." Sorry, but there's no new treatment available. (Never mind the poor writing that used "spectral condition" to describe autism spectrum disorder.)

What did the researchers actually do? They studied a gene (see the paper here) that is already known to be associated with autism in humans–though only about 1% of cases–and that has already been shown to affect the behavior of mice as well. They created a means of "fixing" this gene in mice, and showed that it can restore some of the mouse behaviors to normal. My assessment: this is nice incremental work on a gene that seems to affect behavior in both mice and humans. I don't see it leading to any advances in the treatment of human autism for at least a decade, if ever.

So where are we on reversing autism? Probably no closer than we were before this report appeared. I give the science a B, but the science news gets an F.

A second, more recent bit of "bad news" appeared just a few days ago, when CNN reported that

"Breakthrough in cancer research could spawn new treatments"

Sigh. I can't count the number of times I've read that cancer is about to be cured, only to learn that no new treatment exists, and nothing is even close. So what is this new breakthrough?

CNN reported that

"Researchers discovered that even though cancer cells mutate wildly within a person's body, the cancer cells within each patient also have common mutations–ones that could be isolated and fought off by certain immune cells."

This didn't sound like news to me. Genome scientists have sequenced the DNA of cancer cells in exquisite detail in recent years, and we already know that cancer cells share common mutations. The paper itself, which appeared in Science on March 3, revealed a far less dramatic story.

First of all, the new research applies only to lung cancer. It's a highly technical result that showed that certain immune cells in the body could–just maybe–fight off a particular type of lung cancer. There's no new treatment here, and there won't be for many years, if ever. The science here is pretty good, so I'm giving it an A-, but the reporting over-hyped its impact. Because they included the cautionary "could spawn new treatments", I'll give CNN a C.

The third bit of news is older, but it's still making the rounds on social media. The headline is a real attention grabber:

"New Alzheimer’s treatment fully restores memory function"

If this is true, we're talking Nobel Prize material. Alzheimer's is a devastating condition that affects a large percentage of elderly people, and there's no known treatment. But when I looked up the paper itself, from March 2015, I discovered that it's a study in mice, not humans. The scientists here used a mouse that's been genetically modified to have brain defects that resemble some signs of Alzheimer's. They showed that they could use ultrasound–actually this part is pretty cool and quite exciting–to reduce some of the brain defects in the mice.

Will this lead to any human treatments? Maybe, but there are numerous problems and caveats, as neuroscientist Matthew Zabel pointed out soon after the study appeared. And the effect, even in mice, was rather small: it's wildly inaccurate to claim that it "fully restores memory function." I give the science an A, but sciencealert.com gets an F for that headline.

In all of these cases, the scientists involved are at least a little bit (if not a lot) complicit in the over-exuberant headlines. I understand their eagerness to call attention to their work, but by promising too much, they risk disappointing the public when no cures emerge one, two, five, or even ten years later. Journalists and scientists need to work harder to come up with headlines that excite people about the potential of science without making it seem that we've already cured humankind's most devastating diseases.

NEJM editorial calls data scientists "research parasites." Can Joe Biden fix this?

Vice President Joe Biden recently called for a "moonshot" to cure cancer, which President Obama announced in his State of the Union address last week. Motivated by the tragic death of his son Beau, who died last year of brain cancer, Biden says he will devote his remaining time in office, and many years after, to helping fight cancer. On his VP blog, he writes that he wants to do two things:

1. Increase resources — both private and public — to fight cancer.
2. Break down silos and bring all the cancer fighters together — to work together, share information, and end cancer as we know it.

I'm 100% behind the Vice President on these efforts, and I hope he succeeds beyond his wildest ambitions. But he might discover, paradoxically, that raising money–his first goal–is easy compared to the challenge of getting scientists to share data.

Exhibit A is an editorial titled "Data Sharing" that appeared in last week's New England Journal of Medicine, written by Dan Longo and Jeffrey Drazen, the deputy editor and editor-in-chief of the journal. Drazen and Longo wrote that scientists who wish to use other people's data to make new discoveries are "research parasites." Or, to be more precise, they wrote that "some front-line researchers" (none of whom are named) have this view. They also argued that "someone not involved in the generation and collection of the data may not understand the choices made in defining the parameters" and thus have no business re-analyzing the data.

The condescension implicit in this statement is deeply troubling. Drazen and Longo are saying, essentially, that only the people who originally collect a data set can truly understand it, and anyone else who wants to take a look is a parasite.

The editorial has led to a firestorm on social media. For example, Nobel Laureate Barry Marshall tweeted that

"Plenty of Nobel prizes came from a new look at other people’s data."

UC Davis professor Jonathan Eisen tweeted that the "editorial by @nejm is simply deranged," and a new Twitter account under the name ResearchParasite quickly drew many followers.

I asked Dr. Drazen if he really meant to imply that scientists who use other people's data are parasites. He and I spoke on the phone, and he emphasized that he's a strong supporter of data sharing, and that's he been traveling the country promoting a new policy to share the information from clinical trials (something that rarely happens). Just a few days ago, he and other medical journal editors proposed a new policy on clinical trial data sharing, a policy that (while not perfect) would be a big step forward.

So why, I asked him, did he use the harshly negative phrase "research parasites"? Dr. Drazen pointed out that he had heard this term from others, and that's why he enclosed the phrase in quotation marks in his editorial (true). He shared with me an update that will appear in NEJM this week, in which he and Longo will explain further; however the journal asked that I not quote from that.

I was relieved to hear that Dr. Drazen and his NEJM colleagues are supportive of data sharing, and that are implementing new, more open policies on clinical trial data sharing for the journal. I asked him if he would also state directly that he did not believe the phrase "research parasites" was accurate or appropriate. He declined to comment, though he reiterated the point that this phrase came from others, not from him or Dr. Longo.

So the attitude is clearly out there. Indeed, it's not that unusual: I have encountered similar attitudes many times in my own career, although I should quickly add that it is far from universal.

It's a simple fact today that biomedical researchers (take note, Mr. Vice President) rarely share their data with others. Unless a funding agency or a journal in which they wish to publish requires them to share, they will sit on their data forever. I've personally been involved in projects where the various participants–funded by NIH or other federal agencies–refuse to share data even with other groups in the same consortium. For example (and this is just one of thousands I could point to), the raw data behind this clinical exome sequencing study, led by Baylor College of Medicine and published in 2013 in NEJM, is not available. The data collected by the famous Framingham Heart Study, running since 1948, has been locked up by Boston University scientists for half a century, and only recently (after considerable pressure from their funders) have they agreed to let others take a look at small pieces of the data, if they beg hard enough.

Let's go back to Vice President Biden's blog, where he wrote:

"We’ll encourage leading cancer centers to reach unprecedented levels of cooperation, so we can learn more about this terrible disease and how to stop it in its tracks.... Data and technology innovators can play a role in revolutionizing how medical and research data is shared and used to reach new breakthroughs."

Again, I'm 100% behind the VP here. Biden is already meeting with cancer researchers to see what he can do to accomplish these goals, and I'm sure they will tell him what he wants to hear. In contrast, let's see what Drazen and Longo wrote in their NEJM editorial:

"...a new class of research person will emerge — people who use another group’s data for their own ends, possibly stealing from the research productivity planned by the data gatherers, or even use the data to try to disprove what the original investigators had posited. There is concern among some front-line researchers that the system will be taken over by what some researchers have characterized as “research parasites.”"

Shocking! If you share your data, someone might try to disprove your results! Could it be that a published result relies on misinterpreted data and is wrong? It took me less than a minute on Retraction Watch to find multiple articles retracted by the NEJM itself, including some that were retracted because the original data could not be found.

Disproving a claim using the same data is what reproducibility is all about, and this is one of the most important reasons that data needs to be shared. After all, if someone has distorted their data in order to reach a conclusion that isn't really justified, we need someone else–someone not invested in proving the same result–to re-analyze the data using independent methods. This is how science corrects itself.

These sentiments of the unnamed "front-line researchers" quoted by Drazen and Longo reveal the dangerously arrogant assumption that only they understand the data, and that no one should question their findings. And there's also that concern that another scientist might discover something that was missed by the original group. In what view of reality is this "stealing from the research productivity" of that group?

The phrase "research parasites" also reflects the view of some scientists that the data they collect is their property, despite the fact that their research is (frequently) funded by the public. It's time for the funding agencies to set some new ground rules: if the government funds a study, then we all own the data. Scientists who don't like the rule can find another source of funding (and believe me, they might grumble and complain, but they will do what their funders demand).

One final note: a quick scan of recent articles in the NEJM reveals that, not surprisingly, many of them rely on the human genome sequence. Did any of those authors contact the "data gatherers" to get permission to use the genome in their work? Did they offer to include the human genome sequencers as co-authors on their papers, a step that Drazen and Longo recommend? Of course not–and they shouldn't. When we publish papers, we cite the sources of our data, but we don't ask their permission nor do we include them as co-authors. Citations are the currency of modern science.

So here's some advice to Vice President Biden: don't just talk to scientists and urge them to collaborate. They'll all agree, and tell you wonderful things about their numerous collaborations, but once you leave the room, they'll go back to business as usual. If you really want to change the culture, Mr. Vice President, change the rules.

Which is more urgent: military drones or a cure for cancer?

A Global Hawk drone

The U.S. government has an answer: drones. Drones and other weapons of destruction are vastly more important than healing people - or at least that’s what one might think, based on our government’s spending priorities. In the most recent federal budget, we spent $821.6 billion on defense, which includes $636.2 billion for the Defense Department, $138.9 billion for veterans, and another $46 billion on foreign military aid. We spent just $29.1 billion for the National Institutes of Health, the epicenter of all our research on new cures for disease. That’s a decline of $1.7 billion from 2012 (thanks to the sequester). In the big picture, then, we spent 28 times as much on defense as we spent on curing disease.

Does anyone in the federal government ever step back and think seriously about what our overall priorities are? Or do they just think about whether to adjust a particular agency’s budget a few percent up or down? Congress returns from recess next week, and they’ll make lots of noise about the budget decisions, and then they'll pass something that makes at most a few incremental changes.

A big problem with our short-term approach to governing is that the forces that want to keep everything the same are always more powerful than the forces for change. The people and institutions that benefit from the current budget are already in place, and always at the ready to lobby against change. We desperately need to review our priorities, at least once in a while, and make a rational decision about how much to invest in the things that government does. Do I expect this to happen? No. But that doesn’t mean we shouldn’t try to make the argument.

Here are just a couple of examples of how current spending plans just can’t be stopped, even if they have gone wildly out of control. First let’s consider the Global Hawk drone program, which the Defense Department itself would like to terminate: the Air Force says it has better equipment for the same job. Ending the program would save $2.5 billion over four years. (That’s $2,500,000,000. It helps to write these numbers out.) How did Congress respond to the Air Force proposal? The head of the Armed Services Committee, Howard McKeon (R-Calif.) rejected the proposal and added $443 million to purchase three more Global Hawks. Not coincidentally, the manufacturer of these drones, Northrop, builds them in the district represented by McKeon.

A bigger example is the Joint Strike Fighter program, the most expensive plane in history, which is now estimated to cost $400 billion by the time it starts flying in 2018 - if it’s not delayed further. This is more than triple its estimated cost in 2001, when it was first approved for $119 billion. Just recently, the Pentagon itself reported 147 “major” quality issues with the program. 

We won’t even have these planes for another 5 years, so obviously this hasn’t improved our security yet. And once it starts flying, the Pentagon estimates this fighter plane will cost another $850 billion to keep going. Who decided this was worth it? Is anyone seriously considering scrapping the whole project, before we spend another trillion dollars on it?

There are many more examples, such as the $436,000,000 we’ve spent building new Abrams tanks that the Army does not want. The Army may not want it, but it’s built in Ohio, and the Ohio members of Congress (both Democrats and Republicans) have fiercely defended it. 

It’s not just Defense, of course - we are still funding the 1925 federal helium program, which Congress seems unable to kill. The helium program was started after World War I, when the U.S. was worried that it wouldn’t have enough blimps. Lobbyists are keeping the program alive.

Let’s go back to the big picture. The leading causes of death in the U.S., according to the CDC’s latest figures, are:

1. Heart disease (597,689 deaths)
2. Cancer (574,743 deaths)
3. Chronic lower respiratory disease (129,476 deaths)
4. Stroke (120,859 deaths)

You might expect that we would be pouring money into research on the biggest causes of death in the country - at least as much as, say, a new fighter plane. But you’d be sorely disappointed: the entire U.S. budget for cancer research at NIH's National Cancer Institute is $4.78 billion. That’s for every type of cancer (and there are hundreds). This budget covers clinical research on new treatments, long-term research on understanding cancer, and everything in between. The budget for heart, lung and blood disease (the number 1 and 4 causes of death) is even smaller, just $2.90 billion. 

These numbers are little more than round-off errors when compared to the entire U.S. budget, which for 2013 is $3,454 billion.  The NCI budget is just 0.14% of the total.

How much should we invest in cures for all disease each year? How about 5% of our budget? Or maybe just 2%? That doesn’t seem like too much. Ask anyone who has cancer, or who knows someone with cancer, if 2% of the budget is too much to invest in cures. I suspect that most of them will say it’s not nearly enough. 

2% of the federal budget is $69 billion. Let’s put that on the table as next year’s budget for NIH. Rather than building weapons, let's use our tax dollars to build new things and make new discoveries. Rather than destroying infrastructure in other countries, let’s invest in our future, and create new treatments that make our lives longer and healthier. 

In the current issue of The Atlantic, James Fallows interviewed Eric Lander, one of the world's leading genome scientists, and asked him when genomics would lead to a cure for cancer. Lander responded:

“If we invest vigorously in this and we attract the best young people into this field, we get it done in a generation. If we don’t, it takes two generations. That’s a very big difference.”

Think about it. If we invest more now, you might see a cure for most forms of cancer in your lifetime. Two generations, though, will be far too late for most of us. How many more people need to die from cancers that we’ll eventually be able to cure?