I have four badly damaged lumbar disks, and their associated facet joints. The problem is degenerative, so the pain I experience on a daily basis will continue to get worse, without proper treatment or proper Pain Management treatment. I have a brilliant doctor, who has prescribed medicine, which almost immediately knocks down the pain.
For more than 10 years, my doctor, a specialist in pain management, has prescribed specific medicines, which have a fentanyl base. There were three of them:
1 - Duragesic -- a patch I wear against the skin and changed every two to three days, to help keep the chronic pain minimized.
2 - Actiq, a lozenge (Oral Transmucosal Fentanyl Citrate), put in the mouth whenever I have "breakthrough pain," and allowed to melt so the medicine gets to the pain centers through the mucus membrane; it does its work very quickly to battle that pain, which can happen from any activity, including simply tying my shoe laces, or sneezing.
3 - Fentora, a pill very similar to Actiq. The main difference is that at night, when Actiq has melted off the plastic, pointed stick, there is a very real possibility of that stick puncturing the soft palate, the back of the throat, or other vulnerable areas, and doing damage that could literally kill me while I am waiting for EMTs to transport me to a hospital. The Fentora pills, on the other hand, simply melt between the gums and cheek, dispensing the medication, so that I do not wake up in extreme pain.
All three medications are extremely effective, and give me back a certain quality of life with which I can be productive; no other pain medication will do that, and certainly not as quickly. So what's the problem? These medications are very expensive. The first two also come in a generic form, lowering the cost, while the third, Fentora, has not yet been released in a generic.
While I was on medical coverage from my former employer, their prescription coverage asked for and received a prior-authorization for these medicines. Under their plan, Actiq's generic for 800 mcg, cost me $10 for four (4) boxes of 30 lozenges per box; a one-month supply. They covered Fentora at $60 for two (2) boxes of 28 pills, again a one-month supply for the 800-mcg pills, also a one-month supply. And, they covered Duragesic's generic at $10 for two (2) or three (3) 100 mcg trans-dermal patches - 5 patches in a box, two to three days per patch.
[Note: a "mcg" is one millionth of a gram. The amount of these dosages is so very tiny, compared with other medications, that it is extremely difficult to become addicted. More important to remember are that this medicine goes right to the pain center, and it does not interfere with other medical conditions, which I have, like a heart condition.]
As I said at the beginning, I have four damaged lumbar disks, and associated bone and nerve damage, including facet joint damage. My doctor provided both the former prescription coverage people and the current people, with documentation from various tests, including MRIs, CAT Scans, and something called Disco-grams, which gave, in amazing detail, the reasons for him to prescribe these medications. While they can be prescribed for end-stage cancer patients, they are also prescribed for people who, without their assistance, cannot walk, sit, stand, breathe, or do other physical activities without tremendous pain. Calling me disabled is being kind.
We have tried a number of times, and even gotten our local congressional representative involved, to get United Healthcare's prescription people to approve these medicines. I have even backed off and only requested Actiq, or its generic, given that it is the most necessary medication and the only one that provides nearly instant relief -- as does Fentora -- and without which I cannot function at all.
Now that I have Medicare coverage, and am paying extra for Plan D and Plan F, the Prescription and Supplemental plans, the insurance company, United Healthcare recommended by AARP, will not accept my doctor's requests for prior-authorization, nor will they accept his appeals.
Without insurance coverage, each box of 30 lozenges - used four a day, or every six hours - costs nearly $560.00 a box without the coverage from United Healthcare, so I can no longer afford to buy my medicine at all, and am forced to use something that does not come close to alleviating the pain I experience. With the coverage, and outside of the so-called donut hole, the cost of Actiq is about $140.00 for four boxes. (My previous coverage, through my former employer, provided these meds at $10.00 for four boxes of the generic Actiq, or Oral Transmucosal Fentanyl Citrate 800 mcg.) United Healthcare has put my wife and me in the situation of choosing between medicine or food, medicine or other necessities, like utilities, etc. This is not the way their documentation was written. I read 51 different companies' coverage types, before making that selection.
Recently I had a series of cortisone shots in my spine, to try to hold off the pain. These shots were given without benefit of anesthesia; it was not easy to endure. Moreover, my back problems are what they call degenerative; they continue to grow worse as I grow older.
All I ask is that they cover the Actiq, or the generic; I can survive without Duragesic and Fentora, although not nearly as well as with them. With all three medicines, as prescribed by my Pain Management doctor, I can live a nearly normal life.
Let me explain: Because of my heart condition, I take blood thinners daily. If the pointed stick from Actiq punctures my soft palate, the back of my throat, or other tissue in that area, it can cause difficult-to-control bleeding. This bleeding, combined with my cardiac medicine, Plavix, will make it difficult to stop the bleeding, even while an ambulance is taking me to a hospital. So Fentora 800 mcg, a pill which is put between cheek and gums while it, too, melts, is safer to use while I am sleeping, given that there is no unintentional weapon to puncture my soft palate or other soft tissue. These sticks could -- not will, but could -- puncture me and cause bleeding.
Again, all three medications are necessary, but I am willing try living with only one of those fentanyl-based medicines, if the insurance people will agree to cover that one medicine.
However, each time my doctor sends an appeal for the prior-authorization to United Healthcare, the United Healthcare people deny the appeal and refuse to cover the medications, keeping me in severe pain and discomfort, making me more than simply disabled. They stated that "per the coverage documents, drugs prescribed for non-FDA approved indications are excluded from coverage unless prescribed in one of the following Pharmacological Compendia: American Hospital Formulary Service-Drugs Information (AFHS-DI) or Thomson Micromedex Drudge. Per the submitted records these criteria are not met."
My doctor has indeed written his appeals for the prior-authorization exactly as they (United Healthcare's Maximus Federal Services) have stipulated, as far as my doctor told me. (This doctor, as an aside, is also Mayor of the town in which he practices medicine.) That is exactly what he has been doing -- writing the appeals, which conform to the required formats for those appeals.
I realize this is a lot of detail for a petition. I do hope that this detail helps explain why I am putting this to a petition, in order to help me obtain the medications, necessary to survive.
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