By Pat Anson, Editor
Human Rights Watch is well-known internationally for its groundbreaking reports on human rights violations around the world. The organization has recently reported on the torture of prisoners in Sri Lanka, forced labor in Thailand, and corruption and mass arrests in Saudi Arabia.
Pain News Network has learned the New York-based non-profit is turning its attention closer to home – by launching an investigation into the treatment of chronic pain patients in the United States. The impetus for the investigation began when researchers were studying the treatment of cancer and palliative care patients – and began to see poorly treated pain as a human rights issue.
“People we interviewed who didn’t have access to appropriate medications for their pain were essentially giving testimony that was almost exactly the same as the testimony we were getting from the victims of police torture,” says Diederik Lohman, Director of Health and Human Rights for Human Rights Watch.
“And we realized this was actually one of those issues that almost no one was paying attention to. People were facing tremendous suffering that actually could be relieved pretty easily through very inexpensive palliative care and pain management.”
In many third world countries, Lohman says opioid pain medications like morphine are difficult to obtain, even for patients dying of cancer.
“They would say the pain was just unbearable, that they would do anything to make it stop, and many of them would tell us that they asked their doctors to give them something to put them out of their misery,” he told PNN.
Recently those same stories have been coming from pain patients in the United States.
“As we started looking at this issue more closely, we started hearing more and more stories of chronic pain patients in the U.S. who had been on opioids, who were being told by their physicians that 'We have to take you off.' And we started hearing stories of patients who were having a lot of trouble finding a doctor who’s willing to accept them as a patient,” said Lohman.
Lohman says Human Rights Watch is well aware of the addiction and overdose crisis in the U.S. But he says the “right balance” needs to be found between keeping opioids off the street and making sure medications are still available to legitimate patients.
‘CDC Clearly Knows What’s Going On’
Part of the investigation will focus on the role played by the opioid guidelines released by the Centers for Disease Control and Prevention in 2016, which discourage doctors from prescribing opioids for chronic pain. Although voluntary and intended only for family practice physicians, the CDC guidelines have been widely adopted as mandatory rules by other federal agencies, states and insurers.
The impact of the guidelines was sudden and powerful. Within a year of their release, a PNN survey of over 3,100 pain patients found that 71 percent had their opioid medication stopped or reduced. Nearly 85% said their pain and quality of life were worse.
“The CDC clearly knows what's going on and they haven’t taken any real action to say, ‘That is not appropriate, involuntarily forcing people off their medications. That’s not what we recommended,'" Lohman said. “When a government puts in place regulations that make it almost impossible for a physician to prescribe an essential medication, or for a pharmacist to stock the medication, or for a patient to fill their prescriptions, that becomes a human rights issue.”
Human Rights Watch is looking for testimonials from chronic pain patients who have been forced or encouraged to stop their opioid medication by physicians or pharmacists. They’d also like to hear from patients who have been forced or encouraged to seek alternative forms of treatment, but who then found those treatments financially or geographically inaccessible.
Input from doctors affected by the opioid guidelines, regulations and anti-opioid climate is also welcome.
Investigators are particularly interested in hearing from patients and doctors in West Virginia, Massachusetts, Maine, Washington, North Carolina, Florida and Montana.
“Our work is heavily reliant on the testimonies of people who are directly affected. That’s been our methodology of work for many years,” says Lohman. “We would like for our work to actually help move things in the right direction. But it’s important to document what’s going on.”
(Update: Human Rights Watch has been flooded with responses to this story. At this time, they do not need any additional stories from pain patients. They plan to complete their investigation and release their findings by the end of the year.)