Chronic Pain Patients Rally At The White House For Opioid Access

By John Lavitt 10/25/16

The rally brought attention to the negative impact of the government's strict opioid regulations on chronic pain sufferers.

Chronic Pain Patients Rally At The White House For Opioid Access
#RallyAgainstPain Supporters Photo: via Jeffrey Fudin

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.

Pharmacist Jeffrey Fudin described the bravery he saw, writing in his blog, “Despite blistering cold winds, the #RALLYAGAINSTPAIN in Washington DC … was a success. The real heroes were the patients and their significant others that showed up from all corners of the US Map, from as far west as California all the way to Buffalo NY, Cincinnati OH, Richmond VI, and more. To think that these folks with daily severe chronic pain could even make this trek was an amazing feat.”

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 continued, "We have a big network of people that have been affected by this. We aren’t people with a back sprain. We don’t have anyone that we are working with directly that doesn’t have a pretty severe source of pain or a combination of different illnesses. Chronic pain patients are as stigmatized as substance users. We realize that addiction is another disease—it’s just a different disease. And we want to give all the respect that we can to people who have lost others to overdose. But from our perspective, millions of dollars are going to help the opiate users but there have been no funds for people who rely on opioids for quality of life. We’re the ones who are kind of being stigmatized even as much as the people who suffer from addiction." 

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. From my own observations, this assumption is contradicted by tens of thousands of patient reports in social media that the CDC made no effort to sample or to understand ... 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.”   

According to the DEA, production of hydrocodone, oxycodone and many other opioids will be reduced by 25% or more in 2017. As PNN has reported, if such drastic cuts are made, terminally ill hospice patients in palliative care might be the victims of the new policies. They could very well be unable to obtain the prescription painkillers needed for their ongoing treatment. 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."

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Growing up in Manhattan as a stutterer, John Lavitt discovered that writing was the best way to express himself when the words would not come. After graduating with honors from Brown University, he lived on the Greek island of Patmos, studying with his mentor, the late American poet Robert Lax. As a writer, John’s published work includes three articles in Chicken Soup For The Soul volumes and poems in multiple poetry journals and compilations. Active in recovery, John has been the Treatment Professional News Editor for The Fix. Since 2015, he has published over 500 articles on the addiction and recovery news website. Today, he lives in Los Angeles, trying his best to be happy and creative. Find John on Facebook, Twitter, and LinkedIn.