The Time to Stop Chronic Pain Is Now

At dawn on May 17, 2009, I was woken up by a phone call that informed me that my mother had passed away. I hung up and fell asleep. I've had these nightmares before.

The phone kept ringing: this was not a bad dream. My mother, Tatiana Kislukhina, took her life. After decades of struggling with pain connected to a climbing accident in her youth, she could not take it anymore.

In her moments of grace and despair, I sometimes downplayed her experience. Eventually, I came to think she was special, in a way I did not understand. But she was not alone. Recent study led by CDC and NIH found that 20% of US adults had chronic pain and 8% had high-impact chronic pain—meaning pain that limited at least one major life activity. The societal cost of chronic pain exceeds $500B (3% of US GDP). Across the world, the statistics are similarly frightening, although a large body of evidence supports the notion that Americans experience, perceive, and report pain more than people in other countries. About one-third of Americans said they had experienced bodily aches or pains "often" or "very often" during the past four weeks.

It is very important to emphasize what "chronic" means.  Millions of people are in pain *every single second of every single day*, with no end in sight.  This type of pain affects every aspect of life, easily spiraling further and further out of control.  Loss of productivity and employment, strained relationships, comorbidities like depression, anxiety, and addiction eventually lead to hopelessness.  At this point, the quality of life is "worse than death".  Thousands of people every year cross the line.

The society has failed chronic pain sufferers in many ways. There is no specialized medical training in pain management. Chronic pain is not recognized as a disability. There is very little government and private funding for pain research, compared to other disease areas. The dedicated work of many of our colleagues brought about tremendous progress in cardiology and oncology, relentlessly pushing the life expectancy higher and higher. Meanwhile, chronic pain most often strikes people in their prime, under 45 years old, some 5-fold more women than men—the people who should otherwise be happy, healthy, and productive. In a shocking omen of the severity of the problem, the life expectancy in US declined for two years in a row. Unprecedented in modern times, this reversal is driven by increased deaths from opioid overdoses and suicides.

We are facing this crisis because opioid narcotics is all we have for treating acute pain, and it is extremely difficult to use these drugs safely. The instinctive, knee-jerk response of cutting off the supply of narcotics is harming people who are already suffering from pain. A particularly striking example of misguided policies turned into a major crisis is playing out in Russia. While bakers are prosecuted for adding poppy seed to bagels, people in pain live without legal access to narcotics, and illicit injection drug use has rekindled the HIV epidemic. Across the world, many countries are struggling with same issues.

The dueling efforts of attempting to curb addiction while continuing to provide necessary care for people in pain both have validity, and both suffer from the same fundamental problem: we do not know how to measure pain objectively. What is 5 on a 0-to-10 smiley face scale to one person is 8 to another. The same painkiller gets someone from 7 to 6, and someone else from 9 to 4. Clinical research is hampered by lack of objective pain metric as well.  It is often deemed too risky to fund the development of promising drug candidates because of very high (and intensifying year over year!) placebo effect observed in clinical trials of painful conditions. The mere hope of relief makes people feel better, but the standards of evidence-based medicine require that the investigational drug beats placebo. Nonetheless, a major success story unfolded around anti-CGRP medications, yielding, back-to-back, three independently developed medications for migraines approved by FDA in 2018.

Although the problems could not be any more urgent, there are no easy wins in this arena. One notable obstacle I faced while working on my ideas on measuring pain was the absence of dedicated repository of raw and processed data from the published studies. I believe that a number of people might want to be able to re-trace the authors' logic, verify their conclusions, or throw the latest and greatest deep learning model at the data. And one thing I learned along my transition from lab work to a data scientist was that crowdsourcing works very well to tackle complex projects. The power of collective intelligence, which fueled the explosive growth of digital economy, must be applied to chronic pain. We owe it to our loved ones, our friends, and the humanity to give this problem much more attention and effort than we do now.

On this day, I announce the founding of Aumics, a non-profit with the goal of building the infrastructure for sharing data and ideas necessary to create an objective measurement of pain. As a first step, we would like to encourage the researchers who work on various tools to measure pain to deposit their data and its analysis on publicly accessible platforms such as Github. So far, there hasn't been much incentive for researchers to invest effort into doing so, and it is time to change this. We are establishing the Tatiana Prize, dedicated to my mother's memory. The Tatiana Prize will recognize outstanding contributions to quantitative understanding of pain and the commitment to openly sharing the primary data and scripts used for the data analysis.

We would like to hear from anyone who is involved in pain research: we need your data. We would like to hear from anyone who loves working with data: we need your skills. Do you know a data scientist with interests in healthcare? Please share this post with them. Do you know a researcher in pain-related field? Please tell them about the Tatiana Prize. Do you have skills or any other resources you would like to contribute to the cause? We would love to hear from you!

Pain relief is a fundamental human right. I hope you join us in our journey towards the world free of chronic pain.