dahlia in my garden: Rio Fuego in Coleus leaves

Saturday, March 2, 2013

Shocked & Awestruck: Pain Patients Blocked from Meds

I am totally and utterly shocked. Yesterday I had to contact six different pharmacies to get my medication - and I was beginning to worry I wouldn’t find which would fill my prescription. Though I’ve heard horror stories from pain patients around the country, I was completely unaware of how bad things have gotten for pain patients in my state. Let me explain:

Our insurance was switched (again) with only 15 days notice as of the first of February. I had to find a new internist and get my pain medication refilled before the end of the month. I spent two weeks trying to find a plan-approved doctor who was accepting patients. At last, I finally found one I felt could be a good match for me. I went to the appointment, established my relationship with the new doctor, and got my Rx scrip.

I have to step back a moment and talk about my past healthcare. I was born into HMO coverage where I remained a member for 40+ years. When my genetic disease and chronic pain manifested in my late 20’s, I never had any difficulty getting my pain medication. The first time my insurance switched, I began using a mail order pharmacy and again, I had no problems with ordering and receiving my medication. Starting out on this newest insurance, I called to find out what pharmacies were on my plan, made a list, and decided where to go. I never expected to have an issue. 

I was completely wrong. 

The next day I dashed over to the closest retail pharmacy on the list. I waited my turn, handed over my scrip, and was told they were out of my pills. I asked them if they could order it. 

I was told by the pharmacist, “We only receive a certain amount of opioid medications each quarter because the DEA keeps tight control. When we are out, then we are out.” 

I asked what day they would be restocked and I would come back. He told me he wasn’t allowed to give out that information. I asked him what a patient with a legitimate prescription, who will go through with withdrawal without their medication, should do? 

In a dismissive tone he said, “Try another store.”

I called or visited six different retail pharmacies in an effort to find one who had my pills in stock. Each time the answer was the same. “We are currently out. I do not know when we will have more. I am sorry.”

As a pain patient who has never once abused her medication, never given even one pill to a family member, who keeps her painkillers secure in a safe, who follows her pain management treatment plan faithfully, and has never given any of her doctors a reason to doubt her veracity... I ended up having to zig-zag across my metro-area becoming more and more anxious. After several hours and two more calls to my insurance to try to find another option, I finally got lucky. After first being told they couldn’t fill the whole prescription, on second look, the full amount was found.

© Ray22 | Dreamstime Stock Photos & Stock Free Images

I’m a chronic pain sufferer who is trying to do the best I can. In the primary onset of my genetic illness it was so painful that I became depressed, stopped eating and became anorexic, and my existence was limited to being curled in the fetal position in my recliner. Being put on my pain medication by the National Institutes of Health Palliative Care Team gave me back a chance to have a life. Although my husband was at first upset about me being on an opioid medication, after three days of watching me and seeing how my whole demeanor changed, he said, “It’s like having my real wife back again.”  I’m now in the swimming pool seven mornings a week doing my deep water exercises, I’m also doing intensive physical therapy two days a week with the therapist and every day at on my own at home, as well as paying out of pocket for acupuncture. I am doing everything I can to manage my pain, not relying just on painkillers. You can read about how I manage my pain and consider ideas for your own care by clicking here: Pain Management: Strive for the right mix of elements.

I’m definitely not alone in this. A friend of mine’s son was working underneath a car when it fell on him. He was rescued and rushed to the hospital. When he was discharged from the hospital with many broken bones, he was on opioid medication, and they planned to stop at store to fill the prescription on their way home. Like me, they could not find a retail pharmacy with his pills available. My friend had to drive 20 miles, hopping from store to store, to find one with his meds.

Can you imagine anyone coming out of the hospital and having to go through withdrawal? After surgery? With terminal cancer? How can anyone setting policy: DEA, FDA, politicians, or whoever, think that having a set amount of medication provided to each retail pharmacy is going to solve any kind of addiction/overdose problems in society? What would they say if it was their mother recovering from a mastectomy or their son suffering third-degree burns from a work-related accident?

Why are all pain patients viewed with suspicion, lumped in with addicts and criminals? It’s awful to hear about people who overdose, however, making a sweeping decision that opioids are “bad” and then blocking them from thousands of patients who use them legitimately, safely, and with great success is only going to make the situation worse. Where is the compassion for us? 

In past blog posts, I’ve talked about my fears that California could end up like Florida (read this and this), Washington (read here and here), and New York (read this) where legitimate pain patients are struggling to get access to their pain medications or to even find a doctor who will prescribe for them. 

If you are a chronic pain patient who has had a similar experience to mine, you definitely need to read this article: Is the War on Pain Patients a Human Rights Violation?

What am I going to do next month? Am I going to have to end up driving 20, 30, or 50 miles to get my prescribed medication? Maybe I can try the mail-order option under this new insurance, but now I’m worried about it, too. And as we all know, stress and worry amp up our pain levels like nothing else.

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