Will I still be able to walk?
Feb. 15th, 2014 12:13 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
klwilliamsAs you may know, I have MS. For a while I was taking a drug called Rebif, a series of shots three days a week that suppressed my immune system. The idea is that since my immune system is so good it's bored and has started eating my nerve endings, suppressing it will slow down this behavior. Over the last two years, while my health in general seemed to be stable, my ability to walk got worse and worse.
Enter Tecfidera, the wonder drug. While Rebif (and all the other drugs to that point) would at best suppress about 35% of MS symptoms, Tecfidera (a pill rather than shots) suppresses 50% of symptoms. I started on Tecfidera as soon as it became available. When I started on it, I could walk maybe ten steps at a time, and was working at home. I started using a walker, and needed it to get around my house. Now, less than a year later, I don't use the walker around my house, and only use it to get to work (a 40-mile trip by train and bus to downtown San Francisco) or to walk around open areas where there aren't convenient handholds or places to sit. This week, I was able to ride my bike (an adult trike) the mile downtown, park the bike, walk without a walker into a restaurant to order soup to go (to take back to my husband), and brought it back home. This is huge.
The problem? I have new insurance, Aetna, much better than my old insurance. My current three-month supply of pills was going to run out, so with a three-week supply still at hand I called my pharmacy. MS drugs are acquired through specialty pharmacies, since the drugs need special care, so they need to be shipped via UPS/Fedex. This isn't a ten minute trip downtown. They contacted Aetna for an authorization, who asked for a "prior authorization" from my doctor. Who sent it immediately. My pharmacy (Walgreen's Specialty Pharmacy, which is a dream pharmacy, and in fact a great model for any business. They're just that good.) keep checking in for the official OK, but nothing from Aetna. This past week, with my supply running low, I finally reached someone at Aetna on Wednesday, who said that a nurse needed to OK the prior authorization. I explained I had only a week's worth of pills left, but he said it might take two days. So on Friday I reached someone there, who said that the nurse couldn't OK it, a doctor had to. Why? Because while I had tried Rebif, I hadn't tried another drug (of the same type, that only has a 35% success rate) before moving to Tecfidera. But the man on the phone said he'd send it to a doctor and ask for an update by that night.
Today I called Walgreen's. Nope, nothing. I called Aetna. Nothing. They're not open. On a three day weekend. I run out of pills on Wednesday. I'm not going to get new pills in time. In fact, if Aetna tries to make me try this other drug, it may be a while. For one thing, if I have to take this new drug, my ability to walk will definitely deteriorate. Just when I had hope of getting off the walker entirely soon. Just when I had the outside hope of maybe being able to study aikido again (I am a black belt, after all). Maybe. Or maybe not.
Aetna, why are you damaging my ability to walk?
Enter Tecfidera, the wonder drug. While Rebif (and all the other drugs to that point) would at best suppress about 35% of MS symptoms, Tecfidera (a pill rather than shots) suppresses 50% of symptoms. I started on Tecfidera as soon as it became available. When I started on it, I could walk maybe ten steps at a time, and was working at home. I started using a walker, and needed it to get around my house. Now, less than a year later, I don't use the walker around my house, and only use it to get to work (a 40-mile trip by train and bus to downtown San Francisco) or to walk around open areas where there aren't convenient handholds or places to sit. This week, I was able to ride my bike (an adult trike) the mile downtown, park the bike, walk without a walker into a restaurant to order soup to go (to take back to my husband), and brought it back home. This is huge.
The problem? I have new insurance, Aetna, much better than my old insurance. My current three-month supply of pills was going to run out, so with a three-week supply still at hand I called my pharmacy. MS drugs are acquired through specialty pharmacies, since the drugs need special care, so they need to be shipped via UPS/Fedex. This isn't a ten minute trip downtown. They contacted Aetna for an authorization, who asked for a "prior authorization" from my doctor. Who sent it immediately. My pharmacy (Walgreen's Specialty Pharmacy, which is a dream pharmacy, and in fact a great model for any business. They're just that good.) keep checking in for the official OK, but nothing from Aetna. This past week, with my supply running low, I finally reached someone at Aetna on Wednesday, who said that a nurse needed to OK the prior authorization. I explained I had only a week's worth of pills left, but he said it might take two days. So on Friday I reached someone there, who said that the nurse couldn't OK it, a doctor had to. Why? Because while I had tried Rebif, I hadn't tried another drug (of the same type, that only has a 35% success rate) before moving to Tecfidera. But the man on the phone said he'd send it to a doctor and ask for an update by that night.
Today I called Walgreen's. Nope, nothing. I called Aetna. Nothing. They're not open. On a three day weekend. I run out of pills on Wednesday. I'm not going to get new pills in time. In fact, if Aetna tries to make me try this other drug, it may be a while. For one thing, if I have to take this new drug, my ability to walk will definitely deteriorate. Just when I had hope of getting off the walker entirely soon. Just when I had the outside hope of maybe being able to study aikido again (I am a black belt, after all). Maybe. Or maybe not.
Aetna, why are you damaging my ability to walk?
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no subject
Date: 2014-02-15 08:21 pm (UTC)no subject
Date: 2014-02-16 06:56 am (UTC)no subject
Date: 2014-02-15 08:50 pm (UTC)I have been waiting for the surgery that will let me walk without a cane when I go out. At home I walk with two canes just to keep pressure off my cane arm which can get very sore (something I never thought about). I signed up with the new health plans in November and have just gotten my paperwork. But my bill, which I got on Feb. 7th and which covers me until April 1st, was due Feb 1st -- so I'm waiting to see if I catch flack for being 'late with my payment.' To be on the safe side I'm going to wait and see if I get another bill which will cover me until June 1st. Then I have to hope the doctor I want to see is 'in my network.' So yeah....I get where you're coming from.
no subject
Date: 2014-02-15 09:02 pm (UTC)no subject
Date: 2014-02-16 06:57 am (UTC)And this is why
Date: 2014-02-15 09:12 pm (UTC)Re: And this is why
Date: 2014-02-15 09:58 pm (UTC)no subject
Date: 2014-02-15 09:16 pm (UTC)no subject
Date: 2014-02-15 10:29 pm (UTC)Now might be jumping the gun, but if your insurance does try to force you to go on the other med, how would you feel about writing a brief explanation of the situation (or updating this one) for everyone to link all over the internet in an attempt to shame Aetna into paying for the pills that let you walk?
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Date: 2014-02-15 10:34 pm (UTC)(no subject)
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From:Medical mess-up!
Date: 2014-02-15 10:43 pm (UTC)no subject
Date: 2014-02-15 11:11 pm (UTC)no subject
Date: 2014-02-15 11:57 pm (UTC)no subject
Date: 2014-02-16 06:57 am (UTC)no subject
Date: 2014-02-16 12:08 am (UTC)no subject
Date: 2014-02-16 12:22 am (UTC)I'm so sorry this is happening to you.
Love, C.
no subject
Date: 2014-02-16 12:48 am (UTC)no subject
Date: 2014-02-16 02:46 am (UTC)Maybe Helpful?
Date: 2014-02-16 03:20 am (UTC)http://www.tecfiderahcp.com/tecfidera-coverage.html?entry=quickstart
Re: Maybe Helpful?
Date: 2014-02-16 07:02 am (UTC)Re: Maybe Helpful?
From:Retweeted you
Date: 2014-02-16 03:27 am (UTC)Oops, forgot I was being anonymous
Date: 2014-02-16 03:29 am (UTC)no subject
Date: 2014-02-16 03:50 am (UTC)no subject
Date: 2014-02-16 06:57 am (UTC)(no subject)
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Date: 2014-02-16 05:04 am (UTC)I have TN.
Date: 2014-02-16 07:11 am (UTC)Diana Swiger
Ll
Date: 2014-02-16 07:50 am (UTC)no subject
Date: 2014-02-16 07:56 am (UTC)Got your back. Take your freedom and get rid of that walker!
no subject
Date: 2014-02-16 07:59 am (UTC)This is so infuriating and imo criminal.
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Date: 2014-02-16 08:50 am (UTC)no subject
Date: 2014-02-16 12:39 pm (UTC)Money before lives
Date: 2014-02-16 01:30 pm (UTC)