Living with Pain: Patients Fight Back in Florida

Living with Pain: Patients Fight Back in Florida

Pain patients in Florida are taking their well-being into their own hands by fighting back against the state and federal governments, which are obstructing and, in some cases, denying opioid treatment for chronic pain.

In the last few months I’ve written about the crackdown on pill mills in Florida and the consequent massive disruptions in treatment for people with pain. I wrote about a pain patient who took her own life after a medical practice refused to treat her. I wrote about the difficulties patients have in finding physicians to treat their pain. Even when they do see a doctor and get a legitimate prescription, many patients have to travel great distances to find a pharmacy willing to fill their opioid prescriptions.

I have continued to hear from people with pain in Florida and, as far as I can tell, the situation has worsened there.

My suspicions were confirmed by Donna Ratliff, a former state leader for the American Pain Foundation (APF) and the founder of Fight for Pain Care Action Network, a non-profit group fighting for adequate pain care in Florida. Ratliff started a a Facebook group for people with pain about the time the APF folded. The group has grown as more and more patients find themselves without proper pain care.

Ms. Ratliff gets calls from all over the state from people with pain, who’ve gone through frustrating searches to find physicians and pharmacists willing to treat them. Many of those calls come from patients going through withdrawal symptoms and horrible pain because they cannot get the treatment they need.

Ratliff cites the crackdown by the Drug Enforcement Administration (DEA) on Florida’s infamous pill mills as the genesis of the war on pain patients. Not only did the authorities have good success in shutting down the mills, they also cracked down on physicians and pharmacies they believe were providing too many opioid analgesics to the public. All of this has had a chilling effect on the relationship between pain patients and their doctors. Fewer opioid prescriptions are being written and, as a result, thousands of people in pain are suffering needlessly.

Until recently, I was of the opinion that the fallout from such actions was unintended and accidental. I no longer believe that. It looks to me like there is a concerted effort in Florida and in other states to limit, by legislation and policy, the legitimate prescribing of opioid analgesics. These combined efforts have led to fear, anxiety and ruthless pain.

Protest by Pain Patients

The Fight for Pain Care Action Network is an inspiration for pain patients throughout the country. And they are indeed fighting back. Ratliff and others are organizing a rally on September 12th at the Florida state capitol in Tallahassee to protest the behavior of pharmacies refusing to fill legitimate prescriptions. The protesters will carry signs and banners, and share their stories of under-treatment or non-treatment of pain with the media.

Organizers are also collecting signatures on a petition they hope to present to the governor, asking that pharmacies stop denying legitimate prescriptions for opioid analgesics. They have an online funding effort underway to help them rent buses to transport protestors to Tallahassee. Ratliff has commitments from a few physicians to participate. Though she was reluctant to speculate, she thinks there will be well over a hundred protesters in Tallahassee on the 12th.

This rally is only the first step in a long battle to stop the discrimination against people with pain. The main goal of the rally is to rouse the attention of the public and the media. Public pressure should focus on the Florida Pharmacy Board, which sets policy for pharmacies.

Ratliff believes the policies are too broad and open to wide, indiscriminate interpretation. Pharmacies fear, and have every right to, that the DEA will investigate and close them for selling too many opioid analgesics; a two-headed hydra that the government has unleashed in its war on people with pain.

Ms. Ratliff and a growing chorus of pain care advocates believe this isn’t just a social justice issue, but a burgeoning human rights issue. The pain community is going to need to reach out to human rights organizations to educate them about the staggering numbers of people living with pain in the U.S.

Maybe this rally will be the first stone tossed in the political pond. Let’s hope the ripples spread to every state.

Mark Maginn

Mark Maginn lives in the east bay of San Francisco where he is a poet, writer and social justice activist. Mark suffers from chronic pain and was a longtime volunteer with the American Pain Foundation. His blog can be found here

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There are 12 comments for this article
  1. jo santiago at 10:46 am

    i too been suffering from pain for 23years & right now the meds that am taking are not working anymore due to the fact that i been taking them for so long that i need an increase but i don’t know how tell my doctor for fear ,iam chronicly ill .these reports that am hearing about the DEA putting fear into our doctors & pharmacys in our country is givin me panic attacks & i also have an angnurisim in my head this is complicatings our daily lives & our families too,we as ain sufferers must get together & start campaining calling our representatives in congress & the senate,they the DEA is labeling us as drug user & abusers which we are not i am so angry at my goverment for letting the DEA terrorize us in this important matter that is our health & we must stand up to these bullies an organize us in every state,they have spent the goverment billions of dollars in fighting drugs & there more drugs than ever,people are dying becouse they don’t have their meds it is crazy to thik that every doctor is corrup or that everybody is abusing these pain medications,folks we are fighting for our lives our quality of life old people can not be looking for pharmacys or doctors it is an abuse of authority on their part.we have the right to better life WE ARE NOT CRIMINLAS FOLKS & THEY TREATING US THE DEA LIKE WE ARE.LETS GET THIS TRAIN MOVING

  2. krissy at 3:29 pm

    I lost my job and will soon be homeless because of this. Now about 2 b sick because I. can’t afford to go to my dr or get my meds now it will b even more impossible for me to ever have any kind of normal life again. Thanks dea.!!!enjoy your nice lives homes food and cars I hope karma comes back to all of you. Ur going after wrong people and places as my ex and his loser friends still have no problem getting their drugs on the streets. Which I have reported to crimestoppers for YEARS yet thesepeople continue to deal drugs daily and do them as well. Good job!!!!

  3. Lynne at 4:18 pm

    Thank you for writing for us. We appreciate your support. Not every patient is a druggie. Some are…but mostly we are a collection of severe pain patients who are having trouble getting treatment. Doctors are scared, pharmacists are afraid. Why? The dea needs to clearly say the requirements so the fear can stop. Other laws are not enforced by harrassement and intimidation and this should be no different. All I can say is no one is immune to pain. When it happens to these haters, they will want help too….just like us. No one should commit suicide over not getting medical treatment in the United States. That is horrible and should be embarrassing to the powers that be. Throwing the baby out with the bathwater is not the answer. I believe we can do better than that. Aren’t we the greatest nation? So we can’t solve this problem? Can’t stop druggies without hurting pain patients? If not, why not? We deserve answers.

  4. Donna Ratliff at 11:00 pm

    Thanks Mark for the fabulous write up. We’ll keep you up to date on how it all turns out. This is absolutely a HUMAN RIGHTS violation. What is going on here should not happen in this country or anywhere. I find it very odd that all politicians are going on with their political party rallies without a care in the world and have not said one word about the situation here Florida. There have been some articles and segments in the news about patients living with this situation. Carole Nelson a chronic pain patient and news anchor for CBS for 25 years in Orlando has brought light to this subject and still no reaction from the state. Hundreds, possibly thousands of people have written letters to ALL the state officials about this problem over the past several months but still nothing, just a form letter that doesn’t pertain to the problem gets returned. There hasn’t been one comment from any candidate running for office. It’s as if this is the plague and they don’t want to mention it because it may ruin their chances of winning the office seat. Who cares about winning a seat if they don’t care about the people living in the state? We’re all not a bunch addicts looking for medications. I am hoping that those politicians are driven out to make a statement on what they will do about this? We need answers and we want them now! What’s happening here is inhumane and cruel! This is not only happening to the middle age patients. This is happening to the elderly and the younger patients too. It started out as profiling and has turned into not carrying the medications at all so they don’t have to lie or discriminate. I have been told by a pharmacist who was very nice and she said,” the medications are just NOT coming over the state line and that it’s time that consumers complain”, so that’s what we are doing. She said, they order the medications but they do not come. This has caused forced, needless withdraw or under treatment onto innocent patients and that is not right, it’s terrorism within our own country. I don’t know any other way to put it. Americans have rights; they have a right to pain relief. The medications should be their decision on how they choose to treat their pain. Many have already had surgeries, procedures and everything else. The least invasive way to treat pain is with medications. Intractable pain means there is no cure. I don’t know why oxycodone has to be the big deal? It’s very effective for pain and yes it does allow patients to remain functional without falling asleep on the job. I have had so many elderly tell me they have been falling asleep at work and they are going to get fired if this doesn’t stop. They said this never happened until their medications got changed from oxycodone to something else. Does our state want all these people to end up on disability? The country is already broke. I just don’t see that making any sense but this is where it’s going. Patients have lost jobs in the worst recession in history because they can’t get the medications needed to be able to continue working. Their families will have no home or food if they can’t work. This has already been happening. This situation is horrible, I could sit here and write a book about it but instead we will just go to the capital and have a rally and push the politicians to ease up on the medications. I hope they realize they have gone completely overboard, but then again many of those people don’t understand what chronic pain feels like. This is just a real tragedy. This has got to change. I hope that other patients in other states get the hint here. Start fighting back. Don’t be ashamed because you need pain medications to have any quality of life. Start fighting back. The govt can’t have everything and now is the time to stop this.

  5. Terry Bonomo at 8:54 pm

    What they are doing is just wrong.with out the pain meds all I have left is day after day in pain. Even just laying on the couch is painful. I have had 5 much better years with my wife of 50 years and my grand children. Why they would want to take that away and have me finish my life in pain I just can’t understand that. I am 67 worked and payed taxes all my life.I am not a drug addict or a dealer. Just a grandfather and husband who was hurt on the job and after many surgeries that couldn’t fix the problem pain meds was the only thing that helped. I don’t like taking them. But without them death is a much better option. So please help me and others like me. We just want to be allowed to finish what time we have left with friends and family. I ask you all to Please Please help us. Some day you could be walking in our shoes. Thank You Terry Bonomo Port Richey FL

  6. Shannon Howey at 5:47 pm

    Thank you Mark is all i can say, you wrote it so perfectly. I hope we can see you at the Rally. God bless you and guide you. Thanks again Ms. Shannon

  7. Millie Andreasen at 4:21 pm

    I live in Florida, and I am one of those intractable pain patient’s that couldn’t find a pharmacy to fill my very legal scripts. I have been in intractable pain now for 9 years, and I lived in Fort Lauderdale, Miami and Haines City, and I was always able to filled my scripts, 4 weeks ago I moved back to Miami from Haines City and this is when I experienced what I have only heard of second hand. I took my scripts to the same pharmacy chain that I have use for the last 9 years, but this time in Miami, and the pharmacist said to me; “I do not have those medications”, when I asked if she could order them for me, she proceeded to tell me, that the pharmacy manager was the only one allowed to order narcotics, and that she was on vacation, when I asked when she was coming back, they told me two weeks…. you mean to tell me that this pharmacy was going to be without ANY narcotics for two weeks???!!! Yeah right!

    Well, I took my scripts and proceeded to go to 6 different pharmacies, they all had some kind of excuse for me. We don’t carry those medications, you are not a regular customer, the pharmacy manager is on vacation (one of the favorites), etc. I was frustrated and in tears, because I knew that without my medications I would not be able to walk or function, and of course without them, I will also go into physical withdrawals, so I got really scare. Then I remember this small chain of pharmacies that have been in Miami for ever, went there and what a difference! The pharmacist was pleasant, knowledgeable and able to help, she didn’t have the medications in stock, but she offer to order them for me, and have them there in three days, problem solve!

    How many times am I going to have to do this? Or I should say; why do I have to go through this at all?? I am not a drug addict, I follow all of the rules, the only issue that I have is that an accident left me disabled, with a spine that has titanium, rods and pins. I suffer from pain 24/7-365, why do I have to go through the pain of not been able to find my medications, why?! Is time for the DEA and other groups that are against narcotic medications to start looking at us, us chronic pain patients that can not enjoy a day at the beach, a walk in the park or a simple cup of coffee because our pain rules our bodies. There is a war against us people in pain, and this war needs to stop!! No one should have to go through what I went through to get my medications, this “war” needs to end, we are not the enemies, we are the ones following the rules, but some people that don’t have a clue how it feels to be in this type of pain, have decided to take their cause and fight against us, is ridiculous!! Go fight the addicts, go fight the unscrupulous Doctor’s that dispense narcotics, go fight the pill mills, but leave us and the pain management Doctor’s that treat us alone!! I did not ask for this accident, I did not ask for this pain, so please, please leave me alone!!

    Millie Andreasen
    Miami, Florida

  8. Erica at 4:10 pm

    Wishing well to Linda and to Linda in VA as well; the issues are broad and the fight is strong yet it is a very sad story in which I hope the final chapters turn out well.
    Thank you for all you are doing FL and Linda Cheek, MD for not giving up!

  9. E11 at 2:07 pm

    THANK-YOU Mark for covering this rally! Donna and her group, Fight for Pain Care Actions Network (FFPCAN), are really trying to get the word out about this rally–we NEED to be HEARD! If we don’t do it for ourselves, it will NOT get done. We are on the verge of losing any say so in our own health care, quality of life and access to life saving medications that make life even worth living.

    The media hype that these medications are evil have gone on for far too long–it is time that our community understands that there is a real need for these medications, and by being more concerned with those that break the laws and put themselves in jeopardy, they are completely forgetting about the law abiding citizens that have NOT broken any laws, and only want to have a sliver of life as they perhaps had before, are being penalized AND CRIMINALIZED, for just wanting to live without unending excruciating pain.

    Please come and be heard!

  10. Linda Cheek, MD at 1:18 pm

    I invite anyone from anywhere in the country to come to Virginia and support me at my trial starting Nov 5. I am a good physician being attacked by the laws designed for drug cartels. After aquittal, I plan on fighting this attack on other doctors all over the country. Good doctors are in prison for 20+ years (mandatory sentence under this law) while murderers get released in less than 10. Something is wrong here. Especially when it isn’t the drug that causes addiction, and I think the government knows it. But their jobs and the money lie in attacking doctors.
    If anyone from long distance wants to come support me in November (Nov 5-14), I have a house you can stay in about 1 hour’s drive away that will sleep 10 people in beds, more on the floor. Just communicate the desire to me through my website, http://www.lindacheekmd. We have to change these laws and the ways they are being applied to the medical profession. Why hasn’t this been done before? Surely the legal profession sees the evil of this attack, and yet nothing is done. That’s because it creates jobs for a lot of lawyers. Change is going to have to come from the grass roots. I’m ready to do my part. Please pray that I am able to.

  11. dave at 12:11 pm

    Maginn im glad youre realizong government cant get it right when it comes to pain care perhaps soon toull realize the experts cant get it right eirher

  12. Erika at 11:57 am

    My best wishes to Fight for Pain Care Action Network. You are doing God’s work. People living with chronic pain deserve compassion and care NOT prejudice and discrimination.