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 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.”
Researchers hope to complete the investigation by the end of the year.
If you want to share your story with Human Rights Watch, email researcher Laura Mills at millsl@hrw.org.
Filed under: General Problems
Are you still taking stories from Chronic Pain Patients? There is a rumor that you say have enough, and I doubt that seriously.
I have heard no such thing from human rights watch,,that they got too many,,,never ever heard that at all,,,If it was me,,I would submit and keep submitting,,,In this corrupt climate about our medicine,,I would think the more the better,,eh??jmo,,maryw
Myself and another chronic pain patient have tried many times to contact the woman at her email address, and haven’t gotten any response. Has Anyone else had this problem?
same here. I am trying to find out if they are still taking our stories. I was told from an outside source that they “had enough” and that is just NOT so, if they have only been doing this since March 26th. I appreciate the fact that they have showed interest, but they say they will have a report ready by the end of the year, and that is NOT soon enough, since Medicare’s new policies go into effect 1/1/2019. Time is of the essence here. Lots of people are lawyering up now.
When the US armed forces see what is happening to their veteran brothers with the lack of pain management there will be no more re-enlistments. People will realize that if they are injured, they are as worthless as the enemy. Any injury will be ignored and if they ask for help, they will be labeled as a drug seeker. If they turn to someone for a second opinion they will be doctor shopping. Without anybody to protect America, it will be taken and divided by other countries. But as least we won’t have an opioid problem.
7,000 short enrollments last year alone,,,GOOD,,,marywy
I saw an article that says the CDC admitted inflating the number of overdoses in the US. Maybe that is a first step for them to do what is right to help instead of hurting helpless pain patients. We know it won’t happen overnight, but maybe a step in that direction. I didn’t know about the shortage of people enlisting last year. That should get their attention, hopefully. Thanks for the info, take care.
Inhumane and Cruel is putting it lightly, what the DEA and the doctors that bow down to them to do their jobs. Quality of life use to mean something, when doctors were allowed to practice their trade to alleviate pain and suffering. Now people are expected to suffer in silence and shut up about it while the DEA pats themselves on the back for solving a national problem with direct threats to all doctors who help their patients with documented, proven problems. We all paid for the advancements that have been achieved for a healthier America. Some of us even died so others could enjoy a full life. The DEA has taken all of that away because it is easier to attack documented patients than go after the people causing the problem. Our rights are under attack and we should all have a place where we can stand up and demand them back and a reasonable expectancy of quality health care and quality doctors, not the DEA doctor police department.