7 Things You Should Tell Congress About Pain

By Janice Reynolds, Guest Columnist

With all the shock, discussion, and fear the CDC’s so-called “guidelines” have raised, another threat has slipped past us.  That threat is legislative involvement in pain medication, as well as the belief that addiction to prescription medication is out of control and the Food and Drug Administration is derelict in its duties.

For some politicians, pain is not bad enough to need opioids unless you are dying of terminal cancer.

A group of U.S. Senators wants to investigate the FDA for approving OxyContin for children. Recently, presidential candidate Hillary Clinton was quoted as saying, “We have got to take another look at the ease with which the opioids are being prescribed.  I am very concerned that the FDA has approved a form of opioids for children. And I find that absolutely incomprehensible." 

I gather they would rather sick children be left to suffer.

What is going on?  Addiction to prescription medications is declining due to costs and abuse deterrent formulas.  The approval of OxyContin for children should not have raised concerns.  Remember all the panic and hysteria with the approval of Zohydro?  It has been over a year without problems, not that anyone who cried “wolf” about Zohydro has followed up on that.

I believe it is imperative that providers who understand good pain management join with pain sufferers and write to our Senators, Representatives, and Hillary Clinton -- not only to dispute the CDC, but to tell our stories.  We are a significant number and understand the truth.

People in pain are millions strong and should be having a bigger impact.   Everyone needs to recognize that chronic pain covers hundreds of pain syndromes, and one treatment does not work for everyone.

There has been quite a lot in the last year belittling people with pain and spreading misinformation – including one horrible article with the headline “Commentary: Exaggerating our pain.”

The myth that there is no evidence to support the safe use of opioids is being constantly reinforced. It is so very important we speak up and educate those in government who could potentially make our lives even worse.  I believe it is imperative that people with pain and providers (who haven’t sipped the Kool-Aid) write and tell our Congressmen and women what the truth actually is.

Here are seven talking points: 

1) Children recovering from surgery were already being prescribed OxyContin off label.   There is no evidence to support claims that the FDA’s approval for pediatric use increases addiction.  Do they believe that children should suffer with pain?

2) With abuse deterrent opioids and higher costs, a rapid shift to heroin and other street drugs is taking place. So where does the prescription drug “epidemic” come from and where is the evidence?

3). The CDC’s alarmist attitude and claims that addiction is caused by prescription opioids is based on the opinions of addiction treatment experts and others with no experience in pain management.

4) 100 million people living with pain should have evoked some type of compassion from the CDC. After all, addiction and obesity are treated as “epidemics.”  One would have to believe the CDC is reacting with prejudice. I can’t recall the CDC ever saying anything about people with pain except in regards to addiction.

5) Those in leadership as well as others need to hear the stories of people with pain; what has caused your pain, what has happened to you individually, and how it affects  your family.  They need to know how hard it is get medication, difficulties with pharmacies, problems finding a provider, the harmful consequences of failed urine drugs tests that are often inaccurate, and the providers who stop caring for patients because they’re worried about the DEA and prosecution. 

6) They need to understand that financial issues are frequently a block to good pain management. Insurance often doesn’t pay or pays inadequately for medication and non-pharmacological therapies that actually work for patients.

7) They need to be asked why they are listening only to the CDC and advocacy groups like Physicians for Responsible Opioid Prescribing (PROP) instead of experts in pain management.

Please take the time to write. We need for these stories to be told – not by getting angry – but by presenting the facts of how living with pain affects you and how the myths about taking opioids for pain affects you.

When you write an aide may call you, so have a brief list of talking points handy. It drives them crazy when you know what you are talking about and can refute their point of view.

As a pain management nurse, it infuriates me that wrong information is being given priority. As someone who has persistent pain and has a good pain plan that includes opioids, I am frightened every day that politicians and regulators will destroy my life.  Without opioids my pain would be unbearable.

Janice Reynolds is a retired nurse who specialized in pain management, oncology, and palliative care. She has lectured across the country at medical conferences on different aspects of pain and pain management, and is co-author of several articles in peer reviewed journals. 

Janice has lived with persistent post craniotomy pain since 2009.  She is active with The Pain Community and writes several blogs for them, including a regular one on cooking with pain. 

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