My Story: Pain Patients Need to Unite for DEA Reform

There’s a crisis building in the United States today that is little known, yet may affect every American at some point in their life. It can strike at any moment, without notice and through no fault of their own.

State and federal lawmakers, working with the Drug Enforcement Agency, the Food and Drug Administration and most law enforcement agencies, claim to be well intentioned in their zeal to stop the wave of prescription drug abuse. Unfortunately, the effort to eradicate that abuse has led to the creation of panic among doctors, pharmacists and the patients they serve.

As the father of a seriously ill 29-year old daughter, I can tell you first hand the horror stories that these patients endure, because they are the victims of our out of control policies. Policies that require people with painful and debilitating diseases, like cancer, rheumatoid arthritis and spinal stenosis, to jump through nearly impossible hoops to receive treatment for moderate to severe pain.

Colleen Sullivan

Colleen Sullivan

At the age of 17, during the first week of her senior year in high school, our daughter Colleen complained of a mild sore throat and swelling in her hands. We took her to our family doctor on the eve of the 9/11 terrorist attacks, expecting a quick diagnosis, instructions for a little rest and perhaps some antibiotics.

What we got instead was life changing news. News that we foolishly thought only happened to other people, other families, and other children.  Like the jets that flew into the World Trade Center the next morning, a diagnosis of muscular dystrophy was the very last thing we were expecting.

Our beautiful, ambitious and intelligent little girl faced a crippling disease and life in a wheelchair!  Apparently, the bug that gave her the sore throat had triggered a response from her immune system. When it had done its job and the virus was gone, Colleen’s immune system refused to settle down. Instead it raged… a non-stop, 103 degree fever that caused muscle weakness so devastating that within two weeks Colleen could barely stand, let alone walk.

Colleen’s immune system had nothing left to attack but her own body, and it wouldn’t quit. She spent the rest of her senior year sick in bed, not able to attend another day of class, let alone homecoming, prom or graduation.

What followed was two years of twice weekly chemotherapy, high doses of corticosteroids, years of immune system suppressants and a young girl’s life that was forever changed. Added to the original diagnosis of muscular dystrophy came rheumatoid arthritis, scleroderma, mixed connective tissue disease and a host of other auto immune related disorders.

Pain in her hands, feet, knees and jaw, often severe and intense, was now part of Colleen’s daily life. Her doctors first prescribed OxyContin, a powerful opioid that successfully relieved her pain. Much to her credit, however, Colleen soon realized it was too powerful and too strong. So she stopped taking it.

She is now prescribed Morphine Sulphate and Dilaudid for breakthrough pain.

Colleen's hand.

Colleen’s hand.

In the years that followed, Colleen went back to school and got her high school diploma, then studied business administration at a nearby college. Today, despite having so many odds stacked against her, she maintains a well-adjusted and positive attitude. She is even engaged to her high school sweetheart, Andrew, a wonderful young man who never stops trying to make her life better.

Despite years of powerful drugs and treatments, Colleen still suffers greatly from the advancing effects of these overlapping diseases. Her tendons are contracting and actually bend her knuckles backward, creating what is known as the painful “Swan Neck Deformity” and “Hitchhikers Thumbs.”

Some knuckles are swollen nearly to the size of golf balls, and the tendons in her feet have begun the same process of drawing the toes upward. Some days they are so tight that every step brings tears to her eyes. She has great difficulty walking. Her heart and lungs have also developed painful scar tissue.

Our home state of Florida, working together with the FDA and DEA, has effectively disrupted the distribution of legal pain relief medicines. Hospitals, clinics, first responders and pharmacies have in many cases been unable to obtain drugs to treat moderate to severe pain.

The very people we expect our leaders, legislators and law enforcement agencies to work for are being sacrificed on the altars of a drug war gone wild. The elderly, the sick and the disabled are suffering because they can’t get the pain medication they need. The paranoia and panic has made it nearly impossible for many seriously ill patients to obtain anything but over-the-counter pain relief medicine.

For years now, Colleen has been required by law to see her doctor every 30 days, so he can write prescriptions for pain relief medicines. She is forced to make a 50-mile round trip and sit in a waiting room full of sneezing and coughing sick people; while her immune system is suppressed by Cellcept, a powerful drug normally used to prevent organ rejection in transplant patients.

I cringe that the cold and flu germs in that room could be deadly to Colleen.

In addition, she must take a state required drug test to prove that she takes her medications. She has passed every one.

The Pharmacy Crawl

Then the next step of the ordeal begins. The hunt. The pharmacy crawl. First, we see the pharmacist at the large chain drugstore where Colleen spends an average of a thousand dollars a month on prescriptions. There’s no problem there, except for the pain meds.

“We don’t have them in stock”… “We’re sold out”… “The DEA won’t let us fill our orders”… is what we are told.

 Then we drive to the next pharmacy and are told the same thing.

“We haven’t gotten our orders in a month”… or “Maybe you should see a doctor and pharmacy in Miami.”

That would be a 240 mile round trip for us.

Do we sit and wait, as another pharmacist suggests? Or “stop in on Saturday, to see if anything has come in.”

By then Colleen will be out of the precious medicine that lets her get up in the morning and sleep at night. The meds that make it possible for her to ride in a car when she sees a doctor, or to occasionally go shopping or to a restaurant.

Without the medicine she depends on, Colleen is stuck in pain.

So tomorrow I’ll drive 80 miles up to Key Largo, to see if they have it. The pharmacists won’t tell you over the phone. They are scared and I don’t blame them. The DEA has set so many rules and traps for them, they trust no one.

If no pharmacy there has it, then it’s another 50 miles up to Miami, in the hope that I can come home with something to ease my little girl’s pain. It doesn’t bother me when a new pharmacist gives me a dirty look when they see the prescription for the first time. But it burns me to my soul when they do it to Colleen.

Usually it only takes a moment for them to see the damage to her hands and the look on a worried father’s face. Then they realize that we’re not junkies, we’re not scammers, and we’re not a threat. We are just a young woman who needs help and a father trying to see that she gets it.

They have been conditioned by the DEA to think “druggie.” They are scared. They can lose their job, their career, their assets and their freedom if they make one small mistake. The paperwork, the time and the risk are just not worth it.

The misguided, insensitive and inhumane policies of our government and the DEA in particular, have led us to create a Facebook page called Patients United for DEA Reform. It’s for people like Colleen who need a voice and the support of family, friends and community. People living with pain. You can click the link to our site and read volumes of mounting information about this intentionally created shortage of pain relief medicines and how it could affect you or a loved one someday.

All of us are only one injury or diagnosis away from being crippled with pain.  Think of living every day with a toothache that won’t stop, an untreated broken bone, or surgery with no post-operative pain relief.

People are living with untreated pain every moment of every day because of government over reach and inhumane DEA policies. It must be stopped and it must be stopped now.

George Sullivan

George Sullivan

George Sullivan is a worried Dad in Marathon, Florida.

National Pain Report welcomes guest columns by chronic pain patients and their caregivers.

The views, opinions and positions expressed in this column are the author’s alone. They do not inherently or expressly reflect the views, opinions and/or positions of National Pain Report, American News Report, Microcast Media Group or any of its employees, directors, owners, contractors or affiliate organizations. National Pain Report and American News Report make no representations as to the accuracy, completeness, currentness, suitability, or validity of any information in this column, and is not responsible or liable for any errors, omissions, or delays (intentional or not) in this information; or any losses, injuries, and or damages arising from its display, publication, dissemination, interpretation or use.

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25 Responses

  1. Charli (ColoradoWAC) says:

    You’d think they’d care that more veterans are dying of suicide (due to non treatment of pain issues) then by the wars. I’ve heard that several have killed themselves in the parking lots of VAMC trying to point a finger at the government but the media never reports it. The government and the media are both problems for us.

  2. Charli (ColoradoWAC) says:

    Bobby, replace them with what??? The republicans who are just as bad? This administration is NO DIFFERENT from any other. THEY ARE ALL GREEDY AND ONLY CARE ABOUT THEIR OWN POWER.

    If more of us voted in block then we could change things.

    It’s time to get rid of both the conservatives and the progressives. They are the very same. They are both a minority trying to shove their belief systems down the throats of the majority. I used to be a Republican then I became a Democrat then I became an Interdependent.

    I have been active in politics since I was a teenager. And I watch ever administration do things for the rich and powerful while the rest of us drown.

    We need to get rid of the war on drugs and the DEA. Plain and simple. How many of you voted last election and how many voted for a 3rd party candidate?

  3. Bobby Kennedy says:

    The way I see it is that it’s one more reason to consider your vote for mid term elections. This administration wants to control your health care and I’m sure once it’s implemented you will get even less of the medications you need because they will control the doctors. Tell Congress we don’t want this control vote out this administration. After Obama would smile pretty and say ” Sure you are suffering, but you got me”. let’s not be stupid anymore.

  4. Donna Ratliff says:

    Hi Charli,

    Many people have tried and tried to get a class action suit but we all have had no luck finding any attorney’s that are willing to work with us. This is a sad situation for Americans suffering with pain at this time. I have heard from many veterans that they are being weaned and denied opioids for pain. What a horrible time we are living.
    I honestly hope that somebody will convince the government to stop this war or has luck in finding a way to start a class action law suit. No doubt that many people would join it.

  5. Charli (ColoradoWAC) says:

    We need to organize and get rid of the DEA and the idiotic war on drugs. Personally I don’t care if people want to use drugs to get high. I feel it’s your right as an adult. Portugal got rid of its war no drugs and it’s been a great success.http://www.spiegel.de/international/europe/evaluating-drug-decriminalization-in-portugal-12-years-later-a-891060.html

    I feel if more of us voted our government would be more responsive to us. I’m so tired of fighting to get pain control. As a veteran I’m at the mercy of idiots in DC who create policy. Just like the pain doctors being railroaded by a witch hunt those of us in the VAMC system are being weaned off our opioids.

    WE NEED TO START FIGHTING FOR OUR RIGHTS. i think a class action suit might be just the things and how about suing the DEA for practicing medicine without a license?. I wish they could feel the pain we go through every day.

  6. Rb. Goldberg says:

    [I pose A question-to follow]….. I’ve been in pain mngmt for 10+ yrs. & have multiple Ortho related problems, as well as rare illnesses! I’ve been recently informed my PM Dr. Is under investigation as many are in my State. He has been told to (in so many wrds) start ending current trtmts!!
    The person leading these investigations: believes(&stated) there is NO SUCH thing as chronic pain! I guess we’re all in trouble w/that line of thinking!! MY QUESTION: why hasn’t there ever been A (landmark) case or class action suit brought against these agencies on behalf of chronic pain patients? What is the Patient Bill of Rights? NOTHING I GUESS!!! This is infuriating & causing unnecessary stress to untold millions!!! Colleen & father are in my prayers as is my fellow CP sufferers!!!!

  7. NOTSONUTSO. says:

    Jacqueline, your story terrifies me! You saw a pain doctor who went “crazy” when you told him the meds you take? What is with the “walking with hands in air” all about? Why did he say you need a psychiatrist??? You have documented illness.

    I am prescribed 150 percocet 10/650 (5 per day)
    & 25 mcg fentanyl. When my doctor retires, I fear it will be the end of me. I doubt I will get another doctor who cares about the severe abdominal neuralgia, back & leg pain, etc. I am doomed!!

    To add insult to injury, another doctor said you don’t even have RA despite documented evidence? How did you not just collapse & die? I would have. I am at the point where pain has consumed my life & if I did not have pain meds, I would be gone already. I am 54 years old & just want to feel “normal,” i.e., healthy & pain-free.

    I wish you luck. I wish we could e-mail each other. I don’t have much support either. Considering trying to find a therapist just to vent.

  8. Jacqueline Ross says:

    Dear Mr Sullivan,

    Thank you so much for speaking out about this issue of chronic pain. I do not have the support of my family and always felt alone.

    Many prayers and much love to your family and daughter. Chronic pain afects the whole family and quality of life.

    I mwas diagnosed with RA…CRPS…Fibromyalgia and now being tested for severe weakness of the muscles. My life has changed forever. I can take the biologics for RA as I came down with TB when getting Remicade infusions.

    Recently I went to a new pain dr and I thought I was finally going to get help.I told him I take 5mg percocet x’s 3 and either 10/325 Norco as needed or Tylenol #3 3x’s a day. He went crazy. He told me to raise my hands in the air and then walk down the hall. When I finished his test I was told he’ll think about it and call me on Friday. I received a call today and was told I needed a Psychiatrist not pain meds.

    Tuesday I went to a new PCP. She told me people with RA are deformed and I’m not deformed enough for her. She said my Tylenol#3 was way to much medication and I should only be taking 5/325 percocet just once a day and nothing else. She informed that the ingredient in all pains meds that takes the pain away is the Tylenol???

    I just spent two years going through the court system for get approval for my disability. I was granted full Social Security with Medicare and my full pension from work.

    What am I missing here???

    Thank you
    Jacqueline

  9. Jeanne Hyatt says:

    Thank you for exposing the truth about being sick in Florida today. I am one of the many people here who are forced to do the pharmacy crawl every month. The very people who are too sick to have to deal with running around to different pharmacies are the ones that suffer in this game. The result is that it disrupts your pain cycle and causes one to go into a downhill spiral. There are many people who have tried to fight this but how can you fight the DEA when you have to deal with the loss of your pain medication? You can’t. And so we need people who are well to fight this fight for us. And for this, I thank you for what you do.

  10. Our heartfelt thanks to each and every one who took the time to read about our experiences. A special thanks to those who left such kind and compassionate messages.
    For me, there is no worse pain than watching my child suffer. Seeing the difference that having some degree of pain relief makes in Colleen’s life, is a powerful motivator to work for the changes that will make a difference.
    Be sure to join our Facebook page, where we’re trying to spread the message. https://www.facebook.com/PatientsUnitedForDeaReform

  11. Dewayne Day says:

    Mr. Sullivan,
    I thank you for bringing this to the forefront to the attention of America. I hurt my knee in January 6,2000. After 6 weeks finally got to have surgery on it. Then was in worse pain then I was in worse pain then I was prior to the surgery. After 6 Doctors and 2 rounds of psychical therapy. Was diagnosed with Reflex Sympathic Dystrophy, (now called) Complex Regional Pain Symdrom. I take Ocycodone (30mg) 4 times day, MS Contion (60mg) 6 times, Diliuda (20mg) , besides 16 other pills and 2 inhalers. There are days I hurt so bad I don’t feel like getting out of bed. Have had a pharmacist question why my scripts are written the way they are. My reply was because that’s the way the Doctor wants me to take them. Well that not what the drug company recommends them. I said then you call him. She did and was told as written. You might as well put
    me 6 feet under. Because on top of the C.R.P.S., I have degenerative discs diesease. Have already have neck surgery with a plate put in. Was told couldn’t. Guarantee a better quality of life to have the back surgery, with all the pain I was in from the C.R.P.S. So as Mr. Sullivan says we need to contact out Congress and House of Representives to let them know how we feel. Been fight Social Security for 3 years its all the way to U. S. District Court on my First claim and a second claim. They just don’t get it that I may be up a couple hours. Then need to go lay back down for a while. It is no walk in the park. I’ve had my second spinal stimulator taken out, so we can put a morphine/bacoflen/ diluda pump in as we see the results of these last round of MRI’s.

    Ms. Colleen , we need to keep fighting. Writing and calling everyone we can about this. Thanks for putting your story out there.

  12. Karen Stateler says:

    Subsequent to pressure from 12 members of Congress who were themselves being inundated with complaints from pain patients, their families as well as the large pharmacies, the DEA is now putting pressure on the pharmaceutical companies to produce less of certain pain medications. This makes it more difficult for pain patients to fight as we do not have access to records….a quiet, sneaky way of accomplishing their goals. This needs to be watched!

  13. Shaun says:

    I am a chronic pain sufferer in my 20′s in Australia who has some similar (if not always as severe) problems in obtaining the necessary opiate painkillers. I can only get about a months supply of my regular painkillers at a time, needing to get a new doctor visit each time to obtain permission for more pills.

    Even worse, the pills I get for breakthrough pain come in a pack of 20, which is sometimes enough to last the month but sometimes lasts little more than a week. This has been the case this last week, most of which I have spent in bed due to the pain and/or the drowsiness from the medication. It’s currently a 2 week wait to see a doctor and I just have to hope the pain subsides enough that I don’t run out all my pain relief before then.

    I just find it so evil that people in government are so obsessed with stopping some people having fun in an unapproved of (and granted, possibly reckless) manner that they are willing to cause pain patients like myself significant extra pain to do so.

  14. Matthew M says:

    Here in California, they are attempting to crack down even more on pain medicine. The talk is of eliminating all pain medication prescriptions lasting more than 90 days except for cancer patients. And all of this is driven by the uproarious and fanatical cheerleading of the L.A. Times for more, more, more restrictions. The brutal indifference to the suffering of others evidenced every day by the statements of the press and regulators here has to be seen to be believed; in my opinion, it has transcended mere error and moved into the realm of plain evil. I am sorry you have to live with a situation made more desperate and destructive by the callous actions of little, hard-brained people who possess an almost reptilian lack of empathy.

  15. M10 says:

    Mr Sullivan,
    I agree completely that the US Doctors need to stand up, WITH Us pain patients. Especially hard hit are the Vets from Iraq and Afgan., who have come Home with Horrific injuries, lost limbs, and suffer from chronic pain, phantom pain, and cannot get treated.
    The Docs FEAR the DEA as they can destroy their lives and some in the medical community are working against is pain patients for the reason 1) some abuse pain meds, and 2) the prescription abuse epidemic.
    We pain patients have not caused either but We are punished for it as a “unintended consequence.”
    We really need to Unite in a Nationwide effor. Siobhan Reynolds, before she passed had PRN, Pain Relief Netowrk and although I did not always argee with Her or Who She supported She was a tireless advocate for pain patients. M10
    I Hope We can start a movement – Facebook has a Chronic Pain section or group, perhaps this is the place to start as it is free and already online? Anyone else with Ideas PLEASE post them, this is too important to “let someone else do it” – We who have chronic pain have to do it and do it now, people are suffering and dying as We speak ! I cannot fathom this happening in the USA but it is and the so-called “War on Drugs” is the reason !

  16. terri herring says:

    Mr. Sullivan, Your daughter Colleen is very fortunate to have a dad like you that feels her pain and is willing to speak out & express the many frustrations we pain patients are experiencing. The DEA & FDA are literally tormenting those of us who are disabled & dont have the energy to fight back. We feel beaten up by our bodies with extreme suffering & then beat again by these government agencies. They are suppose to protect us but instead are abusing us with medication limitations & biases. I for one am very apppreciative, as i know many are, for our healthy family members, friends, & advocates that are willing to take up the battle & fight for our right to have access to medications that can give us a better quality of life. We feel blessed to have you in our life & we are grateful for your understanding and love.

  17. Victoria Chadwell says:

    What a wonderful article to read as far as having support. I’m so very sorry for your condition Colleen but it is more than I can put into words how valuable and meaningful it is to have your family with you in your struggle. I too am a chronic pain patient but unfortunately I have the type of family now (since my dad’s passing) that passes judgement and I will never win them over so I don’t even bother trying anymore. The only support I have is support groups and a few of my friends, the few I have left. I wish the DEA would stay out of our lives, we have enough problems as it is, I sign petitions, I write letters to representatives and all that’s left is not giving up hope. I found your facebook page and thank you for mentioning it in the article, I need all the support I can get to make up for lack of with family.

  18. Donna Ratliff says:

    Thank you Mr Sullivan.
    I am so glad that more people are shouting out about the problems here in Florida for patients in pain like your daughter. I have been getting messages from many patients in other states who are being affected just as we are in Florida. I agree this needs to STOP now! I pray everyday that the US government will stop this inhumane treatment. What is it going to take for this to get balanced and when? The conversation about pain medications needs to change. It’s NOT evil and does have a place in this society! We need to be louder and strength is numbers!

  19. Fred Brown says:

    I would like to commend Mr. Sullivan for the information that he has brought forward. Our nation is heading into a horrid direction when it comes to legitimate chronic pain patients.

    I began a web/blog site to help people who either live with chronic pain or those who surround them in their life, their caregivers/advocates.

    Living in chronic pain each and every day and needing to get your legitimate prescriptions filled and running into the road blocks which we hear; “I’m sorry; we ran out of that medication and are not sure when it will be in”. Or “we no longer carry that type of medicine as we have various government agencies looking over us.” This is leading to a crisis that I do not believe we have ever lived through in the past. We are not criminals, we are citizens who have been dealt a blow in our lives and try and live a quality of life each day.

    I believe that it is imperative to let your representatives know what your own experiences have been and let’s try and get a movement to help change this ever growing tidal wave.

    Fred Brown, Founder of legitimatepainpatients.org

  20. Colleen says:

    Thank you National Pain Report and thank everyone who took the time to read my story. I really appreciate all the positive comments and encouragement. It’s nice to know I am not alone in this. It has become so stressful every month wondering if this is the month I will have to go through horrible withdraw and agony. I hope it doesn’t have to come to that…..I always hope for a cure. Never give up!! Especially if you have someone special in your corner like my Dad. I love and appreciate so much everything my Dad has done for me and I hope one day to reward him with my disease going into remission. Love you Dad.

    -Colleen Sullivan :)

  21. Wendy says:

    Thank you so much for starting and promoting the Facebook Page for reforming the DEA. It needs to happen. The Pain Patients are the ones who suffer under the current war on drugs.
    I don’t know what there is to know about Florida, but I am fortunate to be able to skip the local pharmacy and use a mail order pharmacy through my health insurer.
    Keep on keeping on. It is what we must do.

  22. Nancy says:

    Mr. Sullivan,

    Thank you for having the courage to share your daughter’s story. It is one of the worst I’ve heard in this nightmare for legitimate patients to receive the pain care they need, and DESERVE. This story needs to be told over and over. People need to realize that this miserable failure if the war in drugs truly is a war on people with pain. Until you have lived the pain, or have watched a loved one suffer, you just don’t get it.

    The people suffering are daughters, mothers, grandmothers, fathers, children…. It is a human rights violation to deny pain care, and I am losing faith in our country. You are a wonderful father, and I’m happy she has you in her corner. It’s a shame she needs to rely on anyone just to get a prescription filled. It is discrimination against people who suffer from serious, disabling medical conditions. Period.

    I am so sorry that the war in opioids has come to this. I can’t imagine anyone at the DEA, or FDA being “okay” with the unintended consequences like this, but apparently they are.

    It is simply de-humanizing to force people who are already suffering to jump through these ridiculous hoops. For what? So you can sign your privacy & rights away, be drug tested like a criminal, looked down upon by pharmacy staff…..only to be told that our government doesn’t think you deserve freedom from suffering and daily agony? Or be lied to?

    I am so sorry that our country has let so many good people down like this. It is just a disgrace….

  23. Michelley says:

    George. Thank you. Thank you for the tireless work you are doing to put out information on the website. Thank you for being a voice for thousands of people who don’t have the courage (yet!) to speak out. Thank you for being the most amazing dad to Colleen.

  24. Wana Lee M. says:

    I have sever fibromyalgia which includes abdominal neuropathy that causes excruciating pain. I’ve been prescribed percocet since 2000. I get 150 percocet 10/650 per month. I’m also prescribed fentynil patch 25 mcg which does not give much relief & I’m hoping my PCP will increase to 50 mcg.

    I live in fear that when my physician retires (he’s already retired from private practice) that the next doctor will refuse to prescribe my meds. My primary care physician is at the charity hospital clinic in Baton Rouge.

    I’ve never had any problem with the pharmicist I’ve gone to for 11 years. The pharmacists are very nice & helpful & I certainly have never gotten “dirty looks.”

    I am so very sorry for Cassandra. I’m glad I read her father’s story because I am inspired to fight on. She is much sicker than I but is determined to live her life. I have suicidal ideation & every day I wish God would spare a child from cancer & give it to me instead. I feel guilty but that’s the life of a chronic pain patient.

    God bless!!!

  25. Mr. Sullivan,

    Some of these pharmaceutical companies have patient assistance programs. Back in 2002 thru 2005 when I took OxyContin for my chronic pain I could not afford it so I applied for the Purdue Patient Assistance program and I received the medication free of charge from Purdue Pharma patient assistance program, they have mail order pharmacies that fill medications for them. All I had to do was mail in the script from my doctor with the special envelope that they provided for me each time I received a new script.

    Mark S. Barletta

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