Chronic Pain Patients Rally At The White House For Opioid Access | The Fix | By John Lavitt 10/25/16
Though this happened over a week ago, it’s important to notice what a small group of dedicated people can accomplish. Just a handful of advocates worked to create and publicize this successful rally,
No central authority, no affiliations, no money, no strings, just pain patients gathered to demand their rights.
This event was NOT sponsored by any big advocacy group, so it had no ties to any funding by “outside interests”, like pharma, and thus escapes all the “you’re just speaking for drug companies” accusations so often thrown at pain patients who are members of large pain groups.
These large pain advocacy groups, like US Pain and AAPM take significant funding from pharma, leaving them open to accusations of collusion with drug companies.
On Saturday, Oct. 22, chronic pain sufferers and activists held a Rally Against Pain at the White House to draw attention to the millions of chronic pain sufferers, and raise a red flag and say “Enough is enough.” People in actual need of opioid pain medications are losing access to those medications.
According to the Pain News Network, the rally was organized by volunteers through Facebook and other social media, but not supported by either the U.S. Pain Foundation or the American Chronic Pain Association, the largest chronic pain advocacy groups.
The Fix spoke to Lana Kirby, the Florida paralegal, chronic pain sufferer and patient advocate, who organized the event.
About the rally, Kirby explains, “It was a wonderful experience. The people that were there came all the way from Florida, California, Ohio, and even Texas, from all over America. I spoke to all of them and I’ve never met a more deserving group of people. The story was the same with all of them. They were here because they felt like a change had to be made and they were thrilled at the prospect of the rally
Kirby and her community raise a serious question that needs to be addressed. Although opioid medications are not considered to be effective answers for long-term chronic pain management, they definitely relieve the symptoms of people suffering from chronic pain.
Without any clear alternative, it seems cruel not to allow these people to have the medications they need to stay out of pain.
Unfortunately, when the Centers for Disease Control and Prevention released the new opioid prescribing guidelines in March, chronic pain patients and their needs were not addressed.
According to the chronic pain advocates, many patients have had their doses drastically reduced or cut off entirely.
An additional issue that these patients face is a sudden reluctance among many doctors to prescribe opioid medications and prescription painkillers. Many chronic pain sufferers have had the uncomfortable experience of having their old doctors suddenly refuse to continue to prescribe painkillers on a regular basis.
Richard Lawhern Ph.D spoke about the CDC at the White House rally, saying, “The CDC claims that there is no evidence that people who have pain get benefits from opioids that are used for many months or years. The problem with this assertion is that long-term studies simply haven’t been done. So the CDC doesn’t actually know that opioids don’t provide benefit. They simply assume that it doesn’t.
The CDC, in telling patients that ‘the benefits are transient and generally unproven,’ is essentially telling patients they are wrong about their pain and function.”
The public claims of the DEA are very different from the private reality faced by chronic pain patients. The DEA has publicly stated that the cuts are the direct result of a declining demand for opioid painkillers. Though the truth hangs somewhere in the balance.
Kirby tells The Fix, “The government has to stop telling doctors to stop prescribing medicines with opioids. There are patients that need it and to take away their only means is abuse.
This is forcing people to spend more time in the house, in bed. What happens is as people lose that functioning they once had, they become depressed and anxiety sets in. There’s a mental component as well as physical.”
This rally was extremely effective, as the media had never heard many of the points made (the same ones I’ve been posting here). This story in TheFix is the first of what I hope will be more frequent articles pointing out all the flaws in the treatment of pain in this country.