Ambien Hearing: A Fight for Something Bigger

I'm so chaotic in the head at the moment, I'm not sure I can form a coherent post. However, I want to try because the feelings are so raw NOW. I'm emotionally and physically exhausted from today's experience: another that is common in the world of chronic illness.

I honestly want to use the F-word and the A-word right now, but I realize this might offend a significant number of my subscribers, so I have said them out loud only to the walls of this house, my mother and Asher! (Yes, I can be a potty mouth at times, although I try not to be!)

Today I had a 'hearing' with an Administrative Law Judge through the Department of Public Welfare because I disagreed with the denial of a medication I take regularly, Ambien CR.

A quick catch up for those not familiar with the logistics of my situation. I receive Supplemental Security Income (SSI) and Medical Assistance (MA). I do not receive Social Security Disability (SSDI) and Medicare because I did not 'pay into the system' before I got sick.

I have been taking Ambien for eight years now (other than a few trials off of it to see if we could find a better substitute). I have worked with psychiatrists, psychiatric nurse practitioners, my primary care physician, and various specialists in ANS dysfunction and Chronic Fatigue Syndrome over the years and ALL have agreed that Ambien is the best available medication for me. We have continuously discussed the risks and benefits of using this medication long-term. At this point, given my health conditions, we are doing the best we can to treat both the symptoms and the underlying causes of my illness (probably Lyme disease). In my mind there is irrefutable evidence that Ambien is medically necessary.

However for more than a year and half, MA has refused to pay for Ambien or Ambien CR. They have continued to issue denials despite letters from my primary care doctor, my ANS specialist (who is one of the top ones in the country) and myself, documenting my need for this medication and the complicated aspects of my illness. At four bucks a pill this is a chunk of change.

My mom and I have invested endless hours into writing letters, finding research, listing all of the medications I have tried since becoming ill (over 60), etc. It is emotionally and physically exhausting. Both of my parents get the post-hearing crying and sadness.

I have continued to appeal the case over and over, and this was my second hearing, this time under a 'new claim'.

The hearing is set up as follows:

People present on the phone: myself, Administrative Law Judge, a consulting doctor (paid by MA--not a 'neutral' source).

Documents/Exhibits: letters from my ANS doc requesting Ambien CR and why; original clinic notes from appt. with ANS specialist; letter from myself explaining in detail why I need this drug, quoting research on sleep and ANS dysfunction, a list of all medications tried over the past nine years (including those MA considers 'substitutes), etc.; pages and pages explaining MA's formularies and rules for getting a medication; and my very favorite exhibit--a PubMed search done by the doctor for ambien/orthostatic intolerance and ambien/chronic fatigue syndrome showing that there are no clinical studies on these (duh!).

Hearing process:

1. Doctor gives his arguments. Goes document by document explaining why all of the information I have submitted is not valid. Explains how definitive his PubMed search has been and how thorough he has been. Explains over and over again that this drug is not medically necessary and I need a 'formal assessment of sleep hygiene'.

2. I am given time to give my 'counter arguments'. Please note that the doctor had all documents in his possession before the hearing and was able to form his arguments in advance. He talked for over 30 minutes, very quickly and in medical jargon. I scrambled to take notes and keep up.

I have no time to 'digest' or form my arguments. Must give them on the spot. I try to go back through document by document with counterpoints to everything that he has said. HOWEVER, when he gave his original arguments I was permitted to only listen. When I gave my counter arguments, he was permitted to counter argue each one. Note also that my counter arguments were often cut off by the Judge as 'irrelavent to the case' even though I was only going point by point on the same topics the doctor had addressed. So, her head was already filled with 'his information' but my 'facts and opinions' were not fully allowed as evidence.

3. Doctor gives his 'testimony'

4. I give my 'testimony' (I am NOT a lawyer and have no clue how to do this!)

5. I give closing arguments.

6. Doctor gets 'last words' and gives his closing arguments.

I am entitled to a fair hearing? If this is a fair hearing, this is a sad statement on our justice system (which, yes, I know is already screwed up).

7. We are now 'off-record' and doctor asks me in condescending tone if I would like a nurse case worker to 'help me' better understand things.

I realize that these people are paid to help me lose. The doctor was condescending, arrogant, rude and hostile.

A few 'highlights' from the hearing include (his idiotic statements are far too many to type out or make you read!):

He was quite proud of his PubMed search, which I noted, had he broadened his search to 'sleep' and these disorders he would have found literature. To this he, of course, became insulted and explained that he certainly had the skills to do a well-thought out search on PubMed. Even I learned in undergrad that you must try a zillion combinations when searching for something obscure.

He also had NOT read the clinic notes from my first visit with my ANS specialist. These documented my sleep habits, bedding, meditation practices, diet, exercise, etc. (all in his list of requirements for an assessment of sleep hygiene). After pointing these out, he admitted 'because he was under oath' that he had not read the letter in full before the hearing and that now that I made those points I 'probably' met 7/11 criteria for having been evaluated for sleep hygiene.

Please note that I have called MA, our local county assistance office, and other phone numbers multiple times over the past year requesting a definition of a 'formal assessment of sleep hygiene' and have never received an answer.

If, what they need to approve Ambien CR is, in fact, a documentation of sleep hygiene why can't they do one of the following: 1. Send me a form with the list of items/questions for my doctor to fill out and sign, or 2. Have the doctor on the telephone during the hearing process ask me right there the 11 points of sleep hygiene? (I am under oath) The questions are ridiculously simple and obvious--such as do you drink caffeine? Or alcohol? Or do you exercise right before bed? Do you do a quiet activity before bed? (The doctor finally 'revealed' to me what a definition of sleep hygiene actually was, after prompted by the Judge. He expressed disgust that not all doctors knew what the 11 points of sleep hygiene were. So, if it's so readily available and so publicized...well, don't make it so hard for your clients to get!

Aaaaah, but that would be way too simple and make way too much sense AND make it too easy to get Ambien, which they just don't want to pay for!

Most disturbing, and frankly sad, is that he dismissed all of the letters from my specialist. He kept referring to my 'alleged' diagnosis--as if it wasn't really confirmed or real. He also noted that since 2004 (the original clinic notes) and 2007 (a specific letter from my ANS specialist requesting Ambien) 'suddenly the perceived diagnosis had changed, as if I could not have evolving medical issues or newly discovered conditions in addition to ANS dysfunction and CFS.

He kept telling me that I needed to see a sleep specialist to determine the underlying cause of my sleep problems. I tried multiple times to explain that my illnesses ARE the cause of my sleep problems. This is well-documented. If I went to a sleep specialist he would not know diddly-squat about ANS disorders (as I am sure this doctor did not either).

Both this doctor and last year's doctor seem convinced that all chronic sleep problems are a manifestation of depression. Why then is there not a parallel here? Sleep problems are a manifestation of Lyme, CFS and ANS disorders.

Why does a doctor who does not know my case and who does not know the complexities of this illness get to trump the requests of my treating physicians? Why does he trump the experts? How does he get to dismiss every letter as 'circular reasoning' or 'historic' or 'not relevant' or only 'somewhat relevant'?

My doctors are the best of the best. Wouldn't they send me to a sleep specialist if they felt I needed it? Wouldn't they stop prescribing Ambien if it weren't medically necessary? And haven't we, by now, discussed the ins and outs of sleep hygiene enough? I can practice good sleep hygiene from now until the cows come home and it ain't gonna give me a good night's sleep. I still do it, but it's just not that simple doc.

I'm an optimist. But, I will lose this case. The nuances in the law make it so that, although the Administrative Law Judge seemed sympathetic to my case, she cannot approve this medication.

I continue to fight because I can. But I'm growing incredibly weary of fighting for this one medication when I have bigger battles to fight.



I fight for those who cannot fight.


I fight for those who are not as fortunate as I am.


If we have to, my parents can pay for this medication. However, they already pay not only all of my living expenses but for countless things already uncovered by MA--compression garments which go for a hefty price, and trips to specialists out of state, which MA does not pay for, etc.
Without these specialists I would not be anywhere on the path towards healing.


I also fight because I have the resources and the education to fight. If we are being honest, the majority of people on medical assistance are poor and uneducated. I have a solid college education, but no higher education. Still, I can navigate through medical jargon fairly well and articulate my condition well.


The papers that arrive regarding the hearings and denials and appeals are in such legal jargon that even my parents, who both have PhDs, cannot make sense of them. What does a person with little to no education and no money do in such a situation? MA does not pay for medical records that you might need for a hearing. Nor do they pay if you choose to take your case to the commonwealth court.


I'm fighting more than just my own fight. I'm fighting for those who desperately need medications and cannot get them no matter what. I can still sleep at night because someone in my family can pay for a the medication I need to help me sleep.


The entire process is a sad statement on the state of health care and how we treat people with disabilities. I wish I could remember which president said it and how he phrased it, but basically, he felt that a society's strength was based on how well it treated those who needed help the most, particularly those with disabilities. Oh how we are failing.


Right now on capitol hill, former employees of insurance companies are testifying about how, in order to keep their jobs, they had to deny life-saving medications and medical procedures. This made them absolutely heartsick.


Before the hearing I consulted my dad (wannabe lawyer) and asked him how to approach the hearing. He said the best thing I could do was cry and pull out the emotional stuff! I didn't need to fake this. After being sufficiently attacked by the doctor's initial statements, I cried through the rest of my arguments and testimony. And the rest of the afternoon.


I want to not care. I want to stay emotionally detached. But it is impossible when I listen to a doctor talk about me in the ways this doctor did.


Today I 'learned' that after all these years, and all these doctors, and all of these medications I have tried Ambien is not medically necessary and I need a formal assessment of sleep hygiene (just in case you or I missed those specifics repeated five hundred times in the one hour and thirty minute hearing). Still, even after a day of feeling heartsick--and enough stress to set off an ANS 'storm' as a fellow DINET member calls it--I'm one of the lucky ones. I can still take an Ambien tonight and pray for sleep to come. And I'll still be able to get more of those little blue pills even if MA denies me again and again and again.


For those who aren't so fortunate, may a day soon come when you receive what is just and fair and right for your illness. For the doctors who care for us, may a day soon come when your opinions trump the insurance companies. And may the day come when YOU choose what is best for YOUR patients. Most of all, may the day soon come when NO one goes without health care, vital medical procedures, and medications.


And for all of us, may a day soon come when we treat people with disabilities like HUMAN BEINGS.


Blessings,


Emily


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