“Please don’t let them do this.”
“I am so tired of being told which medicines I can take.”
“Patients shouldn’t be made to feel like criminals because they are in pain.”
That’s how many National Pain Report readers responded to our story about a top federal health official suggesting that opioid painkillers be limited to people in severe pain.
“These are dangerous medications. They should be reserved for situations like severe cancer pain,” said Thomas Frieden, MD, director of the Centers for Disease Control and Prevention.
Frieden made the comment during a press briefing on a CDC report on the growing number of women dying from painkiller overdoses. He is the latest federal health official to suggest that prescription guidelines for opioids be changed so that painkillers are no longer routinely prescribed to treat “moderate” pain.
The Physicians for Responsible Opioid Prescribing (PROP), has petitioned the Food and Drug Administration to do just that, by changing the labeling requirements for prescription painkillers. The FDA has yet to decide on the nearly year old petition, but many chronic pain sufferers are fearful the agency will make changes that will limit their access to opioids — or even cut them off entirely.
We heard from many of those worried pain patients.
“Quite frankly as I chronic pain patient with degenerative disc disease, fibromyalgia, migraine and peripheral neuropathy I can’t understand why anyone would want to limit our access to adequate pain management,” wrote Jessica M.
“Telling people that we have to have cancer in order to get pain meds is crazy. I normally wouldn’t wish my pain on anyone, but I sure do wish this guy would feel the pain I do for just one day.”
Another reader didn’t mince words about CDC director Frieden.
“Dr. Frieden needs a hit alongside the head with a 2×4 so he can correctly label migraines as severe pain!!! How DARE he attempt to judge how much pain a person is in,” wrote Michelle.
“What makes you think a cancer patient has more pain than what a migraine patient has or any other patient with pain? Pain is pain. A migraine and a ‘headache’ are NOT the same thing. A migraine causes very intense, severe pain along with many other symptoms,” said another reader.
Several readers pointed out that the difference between moderate pain and severe pain can only be decided by the patient.
“I no longer need opioid medication for my pain, but when I did I was so grateful to have access to it. Who decides when something subjective, like pain, can be labeled severe? The determination can only be part of the communication between the physician and patient,” wrote Joy Selak, who suffers from Interstitial Cystitis and trigeminal neuralgia.
“To change and redefine the entire treatment regime because some overprescribe, abuse, or sadly, become addicted, is just crazy and extreme,” she said
Painkiller abuse and overdoses are what’s driving the movement to limit access to opioids. A widely cited statistic is that over 16,000 Americans died in 2010 from overdoses associated with opioid painkillers.
“I have NEVER abused my medications and never will. I can only guess that many of the 16,000 who overdosed and died in 2010, must have most likely been abusers. They obviously over medicated themselves and did not take their medications as prescribed, or possibly drank alcohol with them,” wrote Tommie Jones, who says he’s been taking OxyContin, oxycodone and other prescription pain medications for 16 years.
“I am so tired of pain sufferers having to see and hear constantly all over the media that they are addicts, they don’t need pain medications. I’m sick of the DEA and other organizations speaking about these opioids as if they have no place in society,” said Donna Ratliff, a patient advocate in Florida.
During the press briefing, Dr. Frieden said there were better alternatives to opioid painkillers.
“These are risky drugs and there are often other medications and other therapies, like physical therapy, exercise, cognitive therapy, that can be very important in addressing chronic pain,” he said.
The trouble with many of those alternative treatments, according to one doctor, is that many are not covered by health insurers.
“Insurance companies are reluctant to cover non-pharmacologic therapies including acupuncture, chiropractic, TENS (with a recent determination that it will no longer covered by Medicare for low back pain). The co-pays for these services including physical therapy and psychotherapy are high with pre-authorizations, caps and limitations that can be stifling,” wrote Howard Hoffberg, MD.
Another CDC official said during the press briefing that there was little evidence opioids should be used to treat common pain conditions such as migraine and fibromyalgia. That too triggered an emotional response.
“All chronic pain patients, including those who suffer from fibromyalgia, should have medications available to them that they know work for them,” said Celeste Cooper, RN, a patient advocate and fibromyalgia sufferer.
“When a patient tells their physician an opioid improves their level of functioning, they should have to right to use them. Suspending the availability of opioids will leave a grave number of patients to suffer needlessly, which is unethical, immoral, and an interference in the physician’s responsibility to do no harm.”
Many Florida residents already know what it’s like when opioid painkillers are hard to get.
“I am 55, a homeowner, tax paying, voting citizen of Florida. I have debilitating RA (rheumatoid arthritis), without opioid meds, I cannot work to support my family,” wrote Kimberley.
“It is nearly impossible to get my oxycodone filled as it is. Last month alone in Pinellas County I had to go to 26 pharmacies to fill my prescription! That is just plain insane! What do you suggest as an alternative? Should I quit my job, blow through my retirement, and then apply for welfare for the rest of my life?”