Time to Fight for Our Rights as Pain Patients

By Carol Levy, Columnist

Where exactly do the Drug Enforcement Administration and the Centers for Disease Control and Prevention stand on working with and helping those with chronic pain, as opposed to ignoring our voices and pleas?

At the Rally Against Pain in Washington, DC on October 22, the CDC was invited to come but no representatives attended.

The DEA notifies all that they will be banning kratom because it is “an imminent public health hazard.” But after a major hue and cry from the kratom community, a decision was made to conduct a new analysis of the herbal supplement and have a public comment period.

Why is it that kratom and medical marijuana, which many patients say are effective in relieving chronic pain, are poison to the powers that be in Washington?

Is it just the result of lobbying by the pharmaceutical industry in an effort to protect profits?

Is it another jab at us because they can't see our “invisible” illnesses and disorders?

Is it a result of the media and the public not knowing or caring about our plight?

October 7 was Trigeminal Neuralgia Awareness Day. Many of us tweeted and posted on Facebook about it, but the news media for the most part gave it a ho-hum. Do they have a policy of not reporting on a disorder if they don’t think enough people have it?  

Instead, the media seems content to repeat the hysteria laden stories and recycle articles about opioid medication abuse, while mostly ignoring those who may benefit from opioids or have them as their only treatment option.

While it is scary to see headlines about banning kratom and other substances many of us use for pain relief, it is worth remembering that an FDA advisory panel in 2009 voted to ban Vicodin and Percocet, because of their effects on the liver. No such ban was adopted, but they did change the amount permitted and how you can get them.

We need to be concerned about the “slippery slope” that comes with threatened bans. Instead of reacting with fear and wasting our emotional energy, we need to respond proactively. Better to get out paper and pen, and start sending letters and emails to your representatives in Congress and the FDA, DEA and CDC.

Kratom supporters won their battle, at least temporarily. Why can’t we?

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Chronic Pain Patients to Rally at White House

By Pat Anson, Editor

Only a few months are left in the Obama administration -- and much of the nation’s attention is focused on the bruising battle between Hillary Clinton and Donald Trump over who will be the next president.

But some activists in the pain community are determined to make some noise of their own. They’re planning to hold a Rally Against Pain on the Ellipse south of the White House on Saturday, October 22.

The goal is to draw attention to the millions of chronic pain sufferers who are losing access to opioid pain medication because of a series of actions by the Obama administration to restrict opioid prescribing as a way to fight the national epidemic of drug abuse and addiction.

“We kind of feel like it was this administration that made this mess,” says Lana Kirby, a Florida paralegal, chronic pain sufferer and patient advocate who organized the rally.

“I mean the harm that is happening every single day. For them to let it go and know that it’s going on, to let it go anyway and leave it for the next administration, that’s not the right thing to do.”

Since the Centers for Disease Control and Prevention released it opioid prescribing guidelines in March, Kirby says many patients she counsels in support groups have had their doses reduced or cutoff entirely. Some have been abandoned by physicians who are no longer willing to treat pain patients because they fear harassment or prosecution for prescribing opioids.   

“It’s just one story after another. You can’t really offer these people any hope or help,” says Kirby. “Just about everybody I know in at least 50 percent of the states have either had their medicine discontinued or cut back to minimal levels.

“The way things keep going with all these restrictions, you wonder where it is going to end and what their overall plan is.”

The biggest jolt to the pain community may be yet to come. The Drug Enforcement Administration recently announced plans to reduce the production of hydrocodone, oxycodone and many other opioids by 25 percent or more in 2017. As PNN has reported, some experts in hospice care are worried the cuts could be so severe that terminally ill patients may not be able to get the pain medication they need.

Publicly, the DEA claims the cuts are necessary because of declining demand for opioids. But patient advocates say the real decline is in opioid prescribing -- not in demand -- and the administration is ignoring the impact its policies are having on pain sufferers.

“They only tell you what they want the public to hear because they want the general public to be against opioids of any kind. And they’re doing it very successfully,” says Kirby.

“No other president in American history has done more to destroy the hopes, lives and natural rights of people in pain then President Obama and his administration,” says David Becker, a social worker and patient advocate who will be one of the speakers at the October 22 rally.

“The FDA, CDC, DEA, and DHHS have made it clear that we are not qualified to have an opinion about pain care or our own good. They are as tyrannical as any despot ever was,” adds Becker. “The people involved with the Rally Against Pain are feeling the moral shock that leads to social movements and social movement organizations. We stand with Lincoln in knowing that silence is sin when protest is needed.”

Kirby is expecting about 300 protestors to appear at the rally – a small number compared to the estimated 100 million Americans who suffer from chronic pain. She says many supporters who want to attend are disabled or in too much pain to make the trip.

The rally was organized by volunteers through Facebook and other social media without the participation of well-funded advocacy groups like the U.S. Pain Foundation and the American Chronic Pain Association. Even so, it could turn out to be largest protest ever held by pain patients.

Kirby says she didn’t want to hold the rally next year -- after the new administration takes office -- because too many pain patients are suffering or even suicidal.

“More people will be gone by then. More people will not be functioning. Things are only going to get worse. If we don’t do something and get some attention right away, things are going to be very bad,” she said.

For more information about the rally and how you can participate, click here.