'Off-label' drugs denied to patients in Medicare D

[Pharmacist.steve]

http://www.usatoday.com/money/industries/health/2007-08-01-medicare-drugs_N.htm

Morris Hilton, 42, whose head was crushed when his apartment collapsed around him during a 1997 tornado in Chattanooga, Tenn., is among the patient stories published in the center's report. He suffers from traumatic brain syndrome and says he experiences debilitating headaches almost daily.

For six years, he took pain medication Actiq, which the state Medicaid program covered. When Medicare began its prescription program last year, Morris, like other disabled residents eligible for both programs, was switched from his state's Medicaid drug program into Medicare.

For six months, his Medicare insurer paid for the drug, then denied it. His doctor switched him to another painkiller approved for use in cancer patients, Fentora, but that was denied also. Both drugs are expensive: Hilton says his Fentora cost $60 a day.

"They're saying to me, 'You're going to have pain all the time, and we're not going to pay for your medication, although if you had cancer pain, we would,' " Hilton says. "What's the difference?"

On Tuesday, Hilton learned that an administrative law judge had ruled in his favor in an appeal of his insurer's decision. On Wednesday, he still did not have the medication, and his lawyer has said the ruling could be further appealed by the insurer.

IF history repeats itself ... whatever Medicare/Medicaid does the rest of the insurance industry gets into "lock-step" within 12 months...

[Mark N]

This argument about pain and the source of it being the reason for approval or denial has never made sense and anyone with an ounce of sense knows it doesn't make sense. How this can even be brought up is only for financial reasons and the reason we need insurance companies to be regulated by states like the utility companies. It wouldn't help in this case because it is our federal gov't at work and if anyone thinks they can put their trust in nat'l health care run by the gov't just look at this case and see it magnified several thousands times to see what we would face. This is idiotic and someone inpower needs to step up and say so.

[suede]

This su***!!

I will say it sure is no surprise here.

Linda

[twotoejoe]

Glad to see that the judge sided with him, and hope he gets his actiq or fentora. As some of you might remember, I started a post about this very same problem with my wife that started in February. We got all the way to the Administrative Law Judge in our case but didn't pursue it any further because of all the other problems my wife is having. She is having such severe problems with 'halucinations' that she doesn't have the energy to pursue anything else. Everything we have done hasn't helped to this point, even to the point of stopping all the morphine in her pain pump. We are now in the process of stopping all the other drugs that could possibly cause them one by one.

[Mark N]

The only thing I would add about his effort to be approved is the question about could he be using other pain meds that are less expensive? $60/day is steep and why is it the only med that he can take other than actiq is this expensive pain med?

[Kira]

I've said this a lot and I will say it again... it PISSES ME OFF that they make this ridiculous distinction between "cancer pain" and "non-cancer pain."

I have a progressive, disabling, painful disease that is gradually destroying my organs and that WILL kill me (unless I get hit by a bus).

My mom has cancer. Right now she is going through chemotherapy for Stage 3b Colon Cancer. She had breast cancer 4.5 years ago and went through surgery, chemo, radiation, and reconstructive surgery for that. She also had a small skin cancer removed from the area where she received her breast cancer radiation, and had cervical cancer at age 30 (for which she received a hysterectomy). We recently found out that the reason for all of this cancer at such a relatively young age (breast cancer at age 47, skin cancer at age 48, colon cancer at age 51) was because of a genetic mutation called BRCA 1. It makes you very high risk for breast cancer, high risk for ovarian cancer, and also moderately high risk for colon cancer and other cancers. She has to have her remaining ovary removed in December when she finishes her colon cancer chemo and will have a bilateral mastectomy sometime this year; both of these surgeries are prophylactic, to dramatically reduce her risk of getting ovarian cancer or having a recurrence of breast cancer (though the breast cancer could still come back as a metastasis in another organ, like bone or liver or lung).

Anyway, here is the thing: after all of my mom's treatment is done, she actually has a much higher chance of disease-free survival than I do. Even with all of that cancer. She had some post-operative pain with each of the surgeries but rapidly tapered off of the morphine PCA and then managed her pain with ibuprofen or tylenol, heating pads, and ice packs. Her pain was pretty much gone within a couple of weeks after each of the surgeries. With the chemo, she has some occasional discomfort from mouth sores, GI issues, headaches, etc... but nothing that can't be handled with numbing mouthwash or topical mouth sore meds, treating the constipation/diarrhea, and the occasional ibuprofen or tylenol. After chemo, she has about an 80-85% chance of tumor-free survival... after the ovarian and breast surgeries, she has essentially 0% risk of ovarian cancer and a very small risk of a recurrent breast cancer metastasis (much less than 10%, I think). She is 52 years old, so assuming the cancer doesn't come back, she should have another 20-30 years of disease-free life yet.

On the other hand, I am in pretty much constant pain from my disease. I have signs of my disease affecting my heart, kidneys, brain, muscles, stomach, intestines, acid/base balance, retinas, and bone marrow's red blood cell making capacity. My mother has just plain said that I am a lot sicker than her and that it makes no sense when I say that I will take care of her if she needs it. My pain levels are somewhat well-controlled right now by my regimen of opiates (fentanyl patches and oxycodone for breakthrough), but I live at a 4-6 (equivalent to unmedicated post-op pain from my shoulder surgery) and go up to 7-8 several times a week (like when the dentist sticks that pick thing into a tooth that needs a root canal, only over large regions of my body). When I have a rhabdomyolysis attack, my pain is a 9-10 for several days straight (crying, curled-up, don't-touch-me, b*tchy, white-hot pain over large regions of my body).

Furthermore, my expectation of disease-free survival is essentially 0%, since there is no cure for mitochondrial disease, pretty much no treatment, and it is a progressive, multi-organ system disease that just kind of destroys your whole body by rendering your cells unable to function so the cells die.

So, while my mom is clearly a cancer patient and I am clearly not a cancer patient, it is plain as day that she has no need for opiate pain medications and that I do. Furthermore, if she were to develop tolerance/addiction, it could potentially destroy decades of future disease-free survival for her. But for me, I am not going to have another day of life without pain or severe, life-threatening disease... so who cares if I end up on increasing doses of pain meds? The logic that is often used when docs talk about why it is more okay to give cancer patients opiates than to give other patients opiates is that cancer patients are going to die anyway, so who cares if they get addicted? But my mom probably will NOT die from her cancer anytime soon, and addiction would be a big problem for her. Plus, she doesn't have much pain from her cancer treatment and has never had pain from the cancer itself. But I WILL die from my disease, and I DO have a lot of pain from my disease.

But, in the eyes of Medicare and many insurers, my pain is somehow not "deserving" of big-gun pain medications like Actiq and Fentora, just because it isn't cancer. It is painful, it is making my organs shut down, and it WILL kill me... probably before my mom dies... yet, because it isn't cancer, it must not hurt, and I must not be going to die anytime soon.

Oh, and they won't give me my benzos, either, right?

Our healthcare system is SO SCREWED UP.

At least my doctors realize that I need treatment for whatever aspects of my disease we can manage. And, right now, my insurance does cover all of my meds. But I haven't tried to get them to cover Actiq or Fentora (not up to doses that high yet), so who knows.

[GardeniaGirl]

Kira- I just wanted to say i LOVED your post on this topic -- I agree with you 1000%.

Your situation juxtaposed with your mother's is such a perfect illustration of this problem.

I feel my own disease inflicts a high level of suffering on me, including severe pain, over a long period of time - but in the overall scheme of diseases, it is not considered very serious at all - its not life-threatening, etc.

I think this is an area where there needs to be a lot more education both for professionals in the medical and insurance fields and the public in general.

[BrokenBladder]

Kira's post said it all for me, this does piss me off!!
The last time medicare was re written was in 1965 and they didn't take into account disabled people at all. I think medicare needs to be looked at again. i mean its only been 42 years!!!!!!

[Pharmacist.steve]

Part D is a RE-WRITE of Medicare BUT ... instead of having a entity to pay the bills - like Part A&B... the PDP's are at financial risk AND at the national level 9 out of 10 are FOR PROFIT PDP's. So it would appear that they are using every trick & loophole in the Part D law to make sure that as many $$$ as possible ends up on their bottom line.