Seeing Pain

From left, Mark Frankel of AAAS, Cindy Steinberg, David Thomas, Edward Bilsky, and David Borsook.]

From left, Mark Frankel of AAAS, Cindy Steinberg, David Thomas, Edward Bilsky, and David Borsook.

Chronic pain affects more than 100 million people in the United States and is a leading cause of suicide as well as an economic drain of more than a half-trillion dollars a year, according to the Institute of Medicine. It’s also one of the “invisible” disorders, like depression, and people who have chronic pain can find themselves misunderstood, shunned, and locked out of the treatment they need. Worse, in many cases, there is no good treatment.

“We really need to accelerate research into the neuroscience and neurobiology of pain,” said activist and chronic-pain patient Cindy Steinberg during a panel discussion on the topic at the American Association for the Advancement of Science (AAAS) in Washington, DC, on Wednesday.

“It’s pretty awful to live an existence when you’re 24/7 in pain. It’s like being trapped in a prison where you’re being tortured 24/7,” said Steinberg, now national director of policy and advocacy for the US Pain Foundation. In her experience, as she spent five years looking for help, “Pain treatment was at the stage of the doctor being blindfolded and throwing darts and hoping to hit a target.”

We’re working on that, said David Thomas, chairman of the prescription opioids and pain workgroup at the National Institute on Drug Abuse. He described the work that went into the Institute of Medicine’s call to action, published as “Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research” (free PDF and online). He said a “national pain strategy” is in the works as well, due out within months.

Thomas highlighted the education part of the blueprint—especially physician and careworker education. “Healthcare providers systematically do not get a lot of training in how to treat pain,” he said. In four years of med school, on average, they get 9 hours of training; in comparison veterinary students in Canada get 87 hours of training in pain. “Something’s wrong here, and I don’t think it’s the vets who have got it wrong,” he said.

Even if you are a well-trained pain clinician, though, there are few good treatments out there, said David Borsook of the P.A.I.N. Research Group, Boston Children’s Hospital at Waltham. “There’s a disconnect between what neuroscience is doing today and what is happening in the clinic.” he said.  “Defining the pain phenotype” should be a goal, using what we are learning about brain plasticity, neurobiology, genetics, neurophysiology, pharmacology, epidemiology, and imaging, to start. Ideally, “We’d like to take every patient and be able to say, we know what to do for you.”

Borsook sees many children in pain in his practice, as does another panelist Edward Bilsky of the University of New England. Chronic pain in childhood has effects that last a lifetime, not only for the child but for family members. Bilsky, a member of the Dana Alliance for Brain Initiatives, told the story of one 13-year-old whose family doctor told her to “get over it” when she said she was in pain. The family went from doctor to doctor, and when they finally did find one who correctly diagnosed her problem, it was too late—even though there are treatments that could have worked earlier, now this young woman “is homebound 90 percent of the time,” he said. For another patient, Amelia, who was diagnosed faster, treatment did work, and that young woman is active in school and in sports.

Educating doctors on workable treatments, the potential of imaging, and other biomarkers for pain, would go a long way, Steinberg said. “Giving healthcare providers more confidence and knowledge, they won’t be as fearful as they are now,” and they won’t avoid or ignore these patients.

“We need to rise out of our [academic] silos,” said Bilsky, and find the breakthroughs patients need. And believe the kids when they say something hurts: “I wish everyone could see this 7-minute video” with Amelia and her family, and they would understand the issue and the level of care everyone needs, he said.

Here you go:

This event, at the American Association for the Advancement of Sciences (AAAS) in Washington, DC, was part of the Neuroscience and Society series, supported by AAAS and the Dana Foundation. See entire session video below. Previous sessions include The Science of Illusion (story, video); Stress and the Brain (storyvideo); Acquiring Taste and Smell (storyvideo); and The Science of Sleep (storyvideo). The next session, on infant development, will be in mid-June.

–Nicky Penttila

6 responses

  1. I greatly worry that while doctors are working so hard to provide more Chronic Pain Patients with paths to “Reduction of Suffering” quote by ME, that at the same time the DEA, certain Pharmacy Chains, those who make protocols and Standards of Care, certain divisions of Big Pharma, and the DEA causing great worry to those doctors who truly care about “Reduction of Suffering” quote by ME suddenly become misguided by STIGMA, that in the mass race to the Power Teet, that those of us who truly suffer, are NOT addicts, get benefits from Long Term Opiate Therapy, will be trampled and left in the dust to fend for ourselves. This is very bad!!! It will cause many people to either run to the street as their Pharmacy (I would rather die than put myself in that position), cause the Suicide Rates to go up, cause the PTSD incidences to greatly rise, cause those with Intractable Pain to die, and many more awful things I cannot specifically think of right now because I have “Pain Brain” to happen as a result of the Healthcare Community and the DEA, FDA, Protocol Makers ( which greatly drives up the costs of healthcare), and anyone else involved in the Bureaucracy against the safest ways to treat chronic pain, just because they do not like the properties of what relieves, and treats the Chronic Pain, to cause Rates of Suffering, to increase it’s speed that will be a “Warp Speed”, than the melting of the Glaciers of Antartica. All of those who are biased by Stigma, doing all they can to protect their own interests, saying one thing is black, because another side says it is white, the way all of you who are causing the innocent to suffer, after this great sufferage, you will have a certain finger pointed at you. After all of this wasted, immense amount of energy, there will be a Reckoning. So instead of doing all you can to keep lining your pockets, how about you just stop NOW, and LOVINGLY compromise, on the side of those who are TRULY suffering, and those who want to help them who are not guided by Stigma?? A day like that would be absolutely BEAUTIFUL!!

  2. We as chronic pain patients are suffering because of the actions of the drug-seekers, addicts and pill sellers. The DEA has so many regulations that the urgent care centers and/or ER’S don’t want to treat break-through intractable pain. I have fibromyalgia, chronic migraine, Behcets disease, cervical disk fusion and arthritis, myofasicial pain, etc. Sometimes my meds don’t work and I can’t cope anymore. Where does that leave us when we get kicked out of an urgent care center because they are “afraid of losing their medical license” so they refuse to treat our pain? Why aren’t alternate therapies covered by insurance? I receive 2 massages a month to try to help with my pain. I was told by my PCP that aqua therapy would help but insurance wouldn’t pay…only $120 a session. Why are prescription pain meds so cheap compared to alternate therapy? Is this so-called panel looking into this???? Some of us have no choice but to work a full time job. How productive do you think we can be if we are living with these chronic illnesses without proper treatment and/or treated like drug seekers when we seek help because we can’t get a migraine under control? Or td that we had been seen too many times in the last 6 months for migraine….who can determine how many migraines they will have? Why is it the doctors right and the people in governments and insurance comapnies right to have a functional life but not us??? I didn’t ask to have these issues…I didn’t ask to inherit these diseases so why should I be punished? Why should I have a less fulfilling life because I have chronic disease? Because the government, the DEA, the doctors or the insurance companies refuse the treatments I need? What is right or moral or fair about that.

    • No, you are being punished by the DEA for possible actions of drug seekers. This is called collective punishment. Collective Punishment is a war crime and is outlawed in the Geneva Conventions. Collective Punishment is also outlawed by the Universal Declaration of Human Rights.

      The DEA are failed Drug Warriors who want to keep their jobs and they don’t care how much you hurt. There is much more to this but I’m in too much pain to write anymore at the moment.

  3. Thank you for speaking up and bringing our battle to the public. I am a 59 year old disabled R.N.with post laminectomy syndrome,peripheral neuropathy,interstitial cystitis ,sciatica,dysautonomia and with narcotics my pain is bearable but never stops. I would not be able to live without the help of narcotics. I am so embarrassed about the discrimination that I have along with the disabled. I am not a criminal but treated as one. I so appreciate your advocacy and information. I pray that death will relieve the pain. I know of 5 suicides this year from untreated and under treated pain. Pain kills in many ways.

  4. Helen Keller wrote it is a terrible thing to see and have no vision-the NPS and the CPATF lack vision for people in pain. THey also dont see the terrible burden of treatment and problems with multimorbidity. They wish to profit off the suffering of people in pain by supporting the NPS- despite the fact the NPS failed to allow all Americans to participate in creating a national plan to address pain. And so the CPATF and NPS will repeat the mistakes of the past by failing to hear any and all concerns of Americans regarding pain. People in pain will remain an underclass- the lonely abandoned folks that Aptrick Wall wrote of over a decade ago.

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