By Pat Anson, Editor
We received a lot of feedback from this month’s PNN newsletter, which looked at the impact the CDC’s opioid prescribing guidelines are having on pain patients.
The guidelines – which discourage the use of opioids to treat chronic pain -- are voluntary and recommended only for primary care providers, yet pain patients say they are being widely implemented by physicians regardless of specialty. Many wrote to tell us they were being cutoff or weaned off opioids. Some were having trouble just finding a doctor willing to treat them.
I thought I’d share some of the comments with you, as well as some tips on what to do if your doctor drops you from their practice.
"My pain medications were reduced the very first appointment I had with my doctor after the CDC guidelines came down,” said Kathleen, who suffers from neck and shoulder pain.
“I have not had an increase in my pain medications in over 4 years and yet I was told that I may have hyperalgesia. I was told that the guidelines are going to cause insurance companies to reject payment for pain meds and that I was going to be weaned off, slowly, but weaned off.”
“Do I believe suicide rates will increase due to these new guidelines? Absolutely. ABSOLUTELY!” wrote Karen, who suffers from Chronic Regional Pain Syndrome and other chronic conditions.
“For myself, I'd choose quality of life over quantity. And I think that's true for most people in chronic pain. When the pain becomes too great, goes untreated and there's no hope in sight, I imagine death would be a welcome end.”
“All I know is they are trying to take my wife’s pain meds away because of a bunch of junkies is insane,” said one man. “They are forcing a lot of people in pain to turn to the streets. If we had an animal that we allowed to live in pain we would be fined or jailed for cruelty to an animal but according to our government it’s ok to do it to people. My wife said she won’t live like that. Wrong. So wrong.”
“I too have been told from my doctor that I'll no longer be receiving Rx narcotics from him. He said as a group they've decided not to prescribe to anyone but cancer patients,” wrote Peggy, who’s been taking opioids for almost 20 years. “There will come a time when I'm bed bound once again, not able to even cook, shower, care for myself because opioids are the only thing that work for me.”
Even some cancer patients are being weaned off opioids, as we learned from 64-year old Dan Hartsgrove, who was diagnosed with throat cancer last year.
“I suffer every day. Cannot eat or sleep due to the pain,” Dan wrote. “I have enough to deal with and no way in the world should be suffering in this manner. No one should. This whole opioid war is a failure and aimed at the wrong people.”
Dan’s pain management doctor said he was taking “too much medication” and discharged him after Dan refused to have a pain pump installed. Even his chemotherapy doctor has lowered his dosage.
“It was fine for me to be allowed the poison of chemo and radiation, however I am allowed no relief from suffering daily,” said Dan. “Where is the compassion? My wife had a friend who was 49 and had throat cancer, he was in so much pain he would put his head through his wall at night when he was trying to sleep. The doctors would not help control his pain and he committed suicide 2 years ago. This is barbaric. I am slowly slipping away from this pain. I need to eat and just can't. Everybody thinks cancer patients are excluded from this war on opioids. NOT TRUE.”
A Florida woman who has been taking opioids for years for an autoimmune disease also says her doctor is trying to talk her into a pain pump.
“I currently have a kind and understanding pain management doctor who knows this is helping me but his office was raided last year by DEA agents and ever since then he has been afraid to prescribe,” she wrote. “I feel I have been given a choice to get the pump or else. I shouldn't have to get something I don't want just to please the DEA and CDC. My doctor feels that by years end opioids will become less available at the pharmacy.”
“Now every snake oil salesman is pushing something to take the pain away. It’s all garbage. Opioids as a whole have been the gold standard for thousands of years when it comes to pain relief,” said Michael. “Take away the only thing that legitimately reduces our pain, then just kill us now, put us in jail or a psychiatric hospital. This is where we will ALL end up if this continues.”
“The last thing chronic pain patients need is to take less medication than they should because they're afraid of either being labelled addicts or even worse, having their medicine taken away without any notice,” said Doreen, who suffers from fibromyalgia and autoimmune diseases.
“My rheumatologist has told me I cannot ever stop taking the pain patches I'm on. I don't enjoy taking them, but it scares the hell out of me wondering what will happen when I get to that point! Please consider chronic pain patients when talking about cancelling the prescribing of opioids!! Where does this leave us?”
Tips for Dealing with Patient Abandonment
Patient advocate and fibromyalgia sufferer Celeste Cooper says she’s been “deluged” with complaints from patients who have been abandoned by their doctors.
“It’s important to understand what is happening. Physicians are caught in a quagmire of discontent. They are put in harm’s way by the DEA and other government agencies if they do prescribe opioids, and yet they run the risk of losing their license if they don’t treat their patient’s pain and it causes harm,” Celeste wrote on her website.
“When a patient is fired, the physician has an ethical obligation to ensure a patient’s care is uninterrupted or they are subject to the repercussions of patient abandonment. If a patient is harmed because they are abandoned, there may be grounds for a lawsuit.”
Celeste says it’s important to gather factual evidence to protect your legal rights, such as getting a written letter from the doctor stating their reasons for stopping your pain care. The physician is also obligated to provide copies of all relevant medical records.
If you have been harmed due to patient abandonment or changes in pain care, you could file a complaint against your doctor under the Ensuring Patient Access and Effective Drug Enforcement Act of 2016, which was signed into law in April.
Flood Congress with Phone Calls
Connie Raterink suggests another way pain patients can get their voices heard. In 1994 she was homeschooling her children when Congress was considering legislation that would have basically made home schools illegal. When attempts to amend the bill failed, home school advocates flooded their congressional representatives with phone calls.
“We literally shut down Congress that day. They couldn't make outgoing calls, and the only ones getting through were home schoolers. They couldn't even call their own staff within Congress!” Connie said. “They got the message, and immediately amended the bill. Over the few days involved with this, there were over one million phone calls made.”
Connie, who suffers from a severe form of osteoporosis, thinks the same approach could be used by pain patients.
“So, pick a date... get the message out.... there are 600 people in my Church alone that would call just on MY behalf,” she wrote. “Congress again needs to hear from us individually, but en masse. We need to tell them to get their noses out of our medical records, and let our doctors make the decisions for their patients, not Congress.”
To learn more about the home schoolers’ campaign, click here.
To sign up for our free monthly newsletter, click here.