Sleeping Angels

How children's sleep affects their health and well being.

Painful Bureaucracy In The Most Literal Sense

New restrictions on docs will cause more patients to go untreated

A reader emailed me in response to a recent post about new restrictions being imposed on doctors treating patients with chronic pain. I'd like to share it with you in its entirety because of how well it frames this very important issue:

Thank you for the article regarding BCBS of MA's [Blue Cross Blue Shield of Massachusetts-DR] new policy (effective July 1, 2012) that will limit access to opioids for patients. I AM one of those people who will be affected by this new policy, and I fear for my future. I have a rare, genetic, connective tissue disorder, called Ehlers-Danlos syndrome (EDS). It causes the production of faulty collagen, and the results are devastating. I suffer from both acute, and chronic pain daily, caused by joint instability, chronic painful joint dislocations, subluxations, OA [osteoarthritis-DR], soft tissue damage, etc... There is no cure for EDS, and treatment is primarily symptom management..... The worst of which is pain. Few doctors are educated about EDS, although it's pain is well documented as disabling. Though I have had symptoms of EDS all my life, I wasn't properly diagnosed (by a wonderful geneticist in Boston) until age 40. You can g

o to EDNF.org to learn about EDS, including the different types, and symptoms. I have finally gotten some pain control through the use of longterm opioid therapy. It doesn't relieve all my pain, but manages it enough for me to function, sleep, eat, and think about other things besides my severe PAIN. I have had multiple joint surgeries, including open Bankart shoulder procedures with anchors on BOTH shoulders, knee surgeries etc... I have suffered through Pubic Symphysis (pelvic) separations during both pregnancies, that left me with disabling sacroiliac, hip and pelvic pain. I have foot bone (Cuboid bone) dislocations, jaw dislocations, patella (knee cap) dislocations, and hip subluxations. Currently, I am having severe Cervical Spine dislocations with spinal cord compression, that is truly agonizing and excruciating, Without the daily, scheduled, use of opioid medication, I would be suicidal from pain. Effective July 1, 2012, I will be at the mercy of BSBS of MA, to decide whether or not I am allowed to have my pain treated. I understand that opioid medication has been abused and diverted into the wrong hands. However, I have a capable doctor (Psychiatrist, Psychopharmacologist), who I have seen since my teens (I am 42 now). He treated my depression for many years, and after my EDS diagnosis, he agreed to treat my pain with opioids. He is aware of my entire medical history, trusts that I only see HIM for pain care, knows I use ONE pharmacy to fill my prescriptions, knows I store and take my medication responsibly, and knows I have severe, legitimate pain. In addition, my depression CANNOT be managed effectively without getting my pain under control! I know that he will do what he can to go through the authorization process for me to get my medication covered (many people will NOT have doctors willing to do this). However, there are NO guarantees that this will happen! BCBS says that "end of life" patients will NOT be subjected to this new policy. How thoughtful! As if they could torture them if they wanted to.... My beloved aunt passed away about two years ago, and was in terrible pain. She said to me, " my pain will end, darling! I'm okay. I worry about YOU having to live in such pain for another 40 years". She was right. Her pain was short-lived, and it ended. MINE? Well...... SIGH.......we'll just have to see if BCBS approves it, or not.

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 Thanks for listening, and again....thanks for the article, and for caring!

 Sincerely,

"Unhinged"

_____

Dennis Rosen, M.D.

Learn how to help your child get a great night’s sleep with my new book:

The Harvard Medical School Guide to Successful Sleep Strategies for Kids: Helping Your Child Sleep Well and Wake Up With a Smile!

 

Dennis Rosen, M.D., is a pediatric sleep specialist who practices at Children's Hospital Boston.

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