Readers Sound Off on Possible FDA Limits on Painkillers

Readers Sound Off on Possible FDA Limits on Painkillers

“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.

bigstock-young-woman-shouting-with-a-me-33045809We 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

bigstock-Woman-Suicide-1396448Painkiller 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?”

Authored by: Pat Anson, Editor

There are 9 comments for this article
  1. SHF at 10:22 am

    My pain journey started when I was a teenager from the age of 19 until 42 no Dr’s would address my pain ,even when I lost a very unhealthy amount of weight from it in my 20’s. It still took until I was 42 before I was ever sent for my first MRI which showed at some point in my life my neck had been damaged and had tried to heal itself by growing a large piece of bone to protect the broken area which had been compressing my spinal cord or all those years. Permanent nerve damage ensued even after 2 corrective surgeries. Combine that with Fibromyalgia, Myofacial Pain Syndrome, Degenerative Disc Disease,Osteoarthritis,severe Bursitis of my shoulder, hips & knees plus all the radiculopathic pain from my neck and back gives one an idea of what I live with daily.
    It took years for diagnosis and then more years to even try opiates out of fear of addiction. When I tried everything I could to no avail I finally said yes to narcotic pain medications. They have made all the difference in my quality of life.I can live again instead of existing.
    Since 2011 I have had to fight every month to get my medications refilled. Had to travel to as many as 17 pharmacies only to be turned away. It.getting worse now as time passes. more shortages because the DEA is limiting what suppliers can send to pharmacies and now the FDA wants to get involved in my relationships with my Dr’s. It is clear Hippa does not matter to them or to certain chain pharmacies. The FDA & DEA alike need to stay out o Dr patient relationships. Doctors need to not have fear of prescribing opiates or other controlled medications in order to ensure that their patients living with Chronic Pain or end stage Cancer Pain can have their pain adequately controlled.
    If this doesn’t happen we are going to continue to see a rise in Heroin overdoses ,suicides, mercy killings and assisted deaths.
    The insanity needs to stop NOW!

  2. Julia at 9:22 am

    Why are those of us who are sentenced to LIFE with severe pain any less important than cancer patients? Nerve pain can be as bad as cancer pain. Shortly before my sister passed away from cancer, she told me that she was the lucky one since I have so many years of pain ahead of me.
    She could handle the cancer pain, until she got neuropathy from chemo. Nerve pain is brutal. I have severe peripheral neuropathy along with many other painful conditions. The only way I have any quality of life is from opiods and topical numbing agents. I have been on the same dose for two years. We are not addicts and should not be compared to them. Our care should be up to OUR own doctors, not a gang of anti-drug doctors who have no idea what we live through daily.

  3. Wendy at 5:40 pm

    Opioids have been around and working against pain for centuries; it is past time for the government to stay out of the middle between doctor – patient and doctor-pharmacy-patient.

    While some think there are solutions to pain beyond opioids, these solutions do not work for every type of pain in all regions of the body. Nor do they work for everyone experiencing severe pain or intractable pain.

    The government affords privacy protection (HIPPA) only as it pleases? Not right. Back off.

  4. gayle at 4:22 pm

    while reading the comments above I just want to cry I just finished burying my brother who was in intractable pain and bedridden after 3 to 4 major surgeries including a rod , plate screws along with the lines from the pain stimulator and morphine pump that the doctor did not remove that’s causing even more pain and when hospice came in from Western Reserve the doctor wanted him to get off muscle relaxers and use relaxation therapy and massage he was diagnosed with cancer of the lungs at this point how ridiculous can you get !!!!! I saw her with the same team

  5. dave at 11:26 am

    Opioids are suboptimal treatment for pain and people in pain deserve much more effective and more comprehensive care then silly opioids. Its remarkable that medicine is so addicted to ineffective treatments like opioids or NSAIDS or bone fusion surgery and continue to pass off McDonaldized medicine and antipathic biomedical care as the answer to any medical condition.

  6. Julie Osenton at 9:18 pm

    It bothers me greatly that the government or FDA is involved in my medical care. I have many issues but one is IC. It has been identified by Harvard University as painful as stage 4 cancer and yet they are planning on taking the opioid pain meds away from my pain care. I see a Board certified anesthesiologist who is also a Board certified pain management Dr. I see him once a month. How can the FDA decide what my pain level is or what is best for me? It is against my HIPPA Rights for big brother to be allowed to violate pt/Dr confidentiality. They are coming after chronic pain pts when alcohol and cigarettes kill more people than prescribed and overseen prescription meds do. When they take away the pain meds of chronic pain patients the suicide rate will rise as no one can live their life in this much pain. Many cannot tolerate it and have nothing left to live for but do they consider the collateral situations???? It is a sad day to take sick people’s meds away from them. It is like the big bully is in town beating up on the little guys.

  7. Eric at 8:06 pm

    I’m sorry, I have been thru 2 back surgeries, then 3 months later had my gallbladder removed, then found out I had crohns disease, 2 more surgeries colon resections, in 3 years, now you want to say here have a Tylenol? Which is poison in its own right, how many people have died from Tylenol? These 37 pencil pushers doctors because their not in the rank and file, they just don’t want to get sued. You might as well tell all the people to shoot themselves because the hospital can’t do anything unless you got cancer. I understand about the states like Florida, I live in Georgia and the laws were lax here too now their not and I applaud them. But I do not applaud these 37 doctors, ask ALL the doctors what they think? Like the back surgeons and pain doctors because you might as well close up shop because, not one person is going to go thru back surgery to be in dying pain. Ask all the doctors not what these doctors think. Because their not the ones that see the people in Pain every day.

  8. Cozette at 6:02 pm

    Chronic pain is not easy to deal with on a daily basis. There are days or times I just stay in pain knowing it is not the best thing to do. But when your own physician counts your pain medication you run the chance of not being able to get medicated appropiately either. I take the lowest dose of pain medication available. I try to keep my stressors low and at best that is a daily trial too. Pain is a subjective measured vital sign and those who are at risk for OD have given signs that have been missed by family/friends/physicians. Those who are intentional to harm themselves are going to succeed anyway with or without pain medications. No one should have to suffer because of lack of pain medication and or pain treatment alternatives!!!!!!!

  9. Wendy at 3:41 pm

    While the FDA and PROPS among others are motivated by alarming 2010 statistics, I read somewhere (perhaps the CDC?) that the 2012 statistics show improvement in every state! This improvement must have come prior to the draconian measures that are being put in place, or are attempting to be put in place. But this is not good enough or somehow does not say something else may be at play. The “pendulum” may be swinging and there may be “unintended consequences” . . . yet pendulums always swing too far and no-one need be an “unintended consequence” — there must be a middle ground to be found for the sake of all.