Migraine, Other Health Issues, and Insurance

Mime-Pleading-150In the late 90's, my Migraines became chronic, leaving me with a debilitating Migraine five or six days a week. Those Migraines cost me my job and left me with pretty much no life. When I learned about true Migraine specialists and began treating with one, things started to turn around. Now, 15 years later, Migraines strike one or two days a week. Because of a great treatment regimen, a Migraine seldom takes me down for more than an hour or two.

Taking daily medications is something I'm never going to like, but those medications make it possible for me to function and to have a pretty good quality of life. There are other conditions for which I need medications too - diabetes, heart disease, glaucoma, and a couple of others. So I count on my medications and being able to get them when I need them.

My husband worked for DuPont for 30+ years. One of the reasons he stayed with DuPont during the last years of his career was for the benefits that would continue through his retirement, including medical and prescription insurance. Our insurance isn't "free" for us. We pay significant premiums to keep the insurance, but if it works the way it should, it's well worth it.

Therein lies the problem. My prescription drug coverage, which is through Express Scripts is so messed up right now that I can't order anything through their mail order service, and if I were to take a new prescription to a local pharmacy, I'm not sure it would be covered.

We first discovered there was a problem when Dr. Watson's (my Migraine specialist) nurse called Express Scripts for a coverage review to get Axert covered. She called me to tell me that Express Scripts said my coverage had ended December 31. John (my husband) called DuPont and was told that they'd sent me a new drug coverage card with a new account number for this year. I had received nothing from them, but John had received Express Scripts insurance cards in the mail. Since he's older and on Medicare, he'd just thrown the cards away because his drug coverage isn't through Express Scripts. After John spent two and a half hours on the phone with DuPont and Express Scripts, we thought the issue was settled. We got logged onto my Express Scripts account online and changed the ID number as directed.

All was well - we thought. Then we discovered that all of my prescription refills had disappeared. I asked Dr. Watson's nurse to do the coverage review for Axert again and send in all new prescriptions. She got the approval for Axert and sent in all new prescriptions for me. Whew! Again, all was well - we thought. BUT, I received yet another new set of Express Scripts insurance cards with yet another new ID number. John called again. He was told that the new number is to go into effect on May 4 and that all of my prescriptions would be transferred to it. I cannot, however, log onto the Express Scripts site to see that account until May 5. When I log onto what's supposed to be my current account, all of my prescription refills are gone - again.

Now, do you want to know the truly confounding issue? Nobody at DuPont or Express Scripts can tell John why all of these changes are being made to my account. Changing ID numbers in the middle of the year is totally unprecedented, and nobody at either company can give us any answers.

I wear two hats in this situation:

  1. The patient who's being stressed and so negatively impacted by the situation.
  2. The patient advocate who helps others but doesn't seem to be able to do anything to help myself with this situation.

To summarize the situation:

  • DuPont and / or Express Scripts keep changing my ID number with no explanation. When new Express Scripts cards come in the mail, all I get is the cards with a "Welcome to Express Scripts" letter. No information about what's changing or why.
  • Hours spent on the phone have resulted in no answers on the what or why.
  • I've had to get all new prescriptions once and may have to do so again.
  • There seems to be nothing we can do other than wait and see what happens next week when yet another new ID number goes into effect.

There's absolutely no excuse for nobody being able to answer our questions. I can say with absolute confidence that if I performed my job so poorly, I'd be fired. John worked for DuPont for 30+ years with the guarantee of benefits through retirement until each of us reached the age where Medicare took over. We've paid significant monthly premiums for my coverage since he retired 15 years ago. There's no possible excuse for all of the inefficiency here or the plain old stupidity involved. It's not even as if DuPont and Express Scripts are giving me this coverage out of the goodness of their hearts. John worked for it for over 30 years, and we're PAYING for the coverage.

On top of the impact of Migraine and my other health issues on my physical health, I now have all of this stress impacting both my physical and mental health. Insurance should be there to help us with our health issues, not make them worse.

Live well,

PurpleRibbonTiny Teri1
 

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© Teri Robert, 2015
Last updated April 29, 2015.


Botox for Migraine: Sept., 2010, Update

Botox100 Clinical trials to determine the efficacy of Botox (botulinum toxin type A) for Migraine prevention have been underway for several years. During this time, some doctors have used Botox off-label for their patients. Let's take a look at where things stand now, in September of 2010.

A bit of background: Off-label prescribing or usage of medications is very common. "Off-label" simply means using a medication for a purpose other than those for which the FDA has specifically approved it. Once a medication is approved by the FDA for human use, it's both legal and legitimate for doctors to prescribe it for other conditions when they believe it will be helpful. Migraine preventive medications are a perfect example of off-label prescribing. Of the more than 100 medications in use today, none of them were originally developed for MIgraine treatment. They were all developed for other conditions, then found to work as preventives for some Migraineurs. Four of them were put through the additional clinical trials to win formal FDA approval for Migraine prevention:

  1. propranolol, a beta blocker, brand name Inderal
  2. timolol, a beta blocker, brand name Blocadren
  3. divalproex sodium, a neuronal stabilizing agent (anticonvulsant), brand name Depakote
  4. topiramate, a neuronal stabilizing agent (anticonvulsant), brand name Topamax

What's NOT permitted:

It's legal to prescribe medications off-label, BUT it's not legal for pharmaceutical companies to promote or advertise a medication for any purpose for which it's not FDA approved. That means that Allergan, the manufacturer of Botox, may promote and advertise it for the purposes for which it is already approved - cosmetic purposes, blepharospasm, cervical dystonia, hyperhidrosis, strabismus, and upper limb spasticity. Promoting it for off-label use constitutes what the FDA calls "misbranding," and it's illegal.

Recently, Allergan was in the news when they agreed to pleas guilty and pay a $600 million fine to resolve allegations that they had promoted Botox off-label.

A point that needs to be understood about this is that the issue was NOT about doctors using Botox off=label. It was entirely about allegations that Allergan had promoted it for purposes other than those for which it was FDA approved. So, it has nothing to do with the medication itself, but about marketing and promotion practices.

Good news of progress:

Botox was recently approved in the UK for treating Migraine. In the U.S., the FDA is currently reviewing clinical trial data about Botox and Allergan's application for FDA approval of Botox for Migraine treatment. Many Migraineurs are hopeful that FDA approval will come soon. I've heard from many Migraineurs who would like to have the option for trying Botox for MIgraine prevention, but their insurance companies decline payment, saying that the treatment is "experimental" or "investigational."

If you've been wondering about Botox, you might be interested in reading Allergan's information about Botox History and Development, which includes a time line of when Botox was approved for various uses.

Live well,


 

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© Teri Robert, 2010
Last updated September 13, 2010


National Headache Awareness Week 2010

NHAW2010_100 June 6 - 12 has been designated as National Headache Awareness week for 2010. National Headache Awareness Week (NHAW) was started by the National Headache Foundation (NHF), and they continue to organize and sponsor the observation each year.

Don't let the name fool you. Migraine is definitely included in this observation and the work of the NHF. It can be a bit confusing, but this area of medicine has long been called "headache medicine," and there are times when Migraine is included in the term "headache."

This year, NHAW recognizes the 40th anniversary of the NHF. You can learn more about the NHF and this year's NHAW events HERE.

One of the most recent projects of the NHF is a survey, the findings of which are being released just in time for NHAW...

Read more about National Headache Awareness Week and this survey in National Headache Awareness Week 2010.

Live well,


 

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Last updated June 7, 2010

Help Paying for Migraine Medications and Doctors' Visits

It's a sad commentary on our society as well as the state of the U.S. economy that people are going without their Migraine medications because they can't afford to pay for them. Even worse, it's happening more and more frequently as the U.S. economy is in upheaval. Even those with health insurance are having problems, especially as insurance companies narrow their formularies, raise copayments, and otherwise increase the portion of prescription expenses for which patients are responsible.

image from www.helpforheadaches.com The major pharmaceutical companies have patient assistance programs set up to help people who can't afford their medications. Figuring out these programs can be problematic as the requirements and application process varies from company to company, and the various programs can change over time.

Partnership for Prescription Assistance brings applications for all of those programs together in one place. They also have information on nearly 10,000 free health care clinics and has connected more than a quarter of a million patients with clinics and health care providers in their communities.

Do you need help paying for health care and prescriptions? Do you know someone else who does?

Learn more about the Partnership for Prescription Assistance in this article: Partnership for Prescription Assistance: Helping Those Who Can't  Afford Medications and Health Care.

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Last updated June 5, 2010

Migraine News, Tips, and More

Puz-only-btn Do you find it difficult to keep up on Migraine information? My FREE Putting Our Heads Together email newsletter can help!

Delivered to your email weekly, the newsletter includes links to...

  • treatment news;
  • research news;
  • articles about different types of Migraines and headaches;
  • tips for living with Migraines;
  • news and information from Migraine and headache organizations such as the NHF, MRF, and AHS;
  • places to ask questions and get answers;
  • quizzes to test your Migraine and headache knowledge;
  • fun word games;
  • and more!

Putting Our Heads Together is delivered to your inbox on Mondays. When Monday is a holiday, it may be delivered on Tuesday.

I know how hard it can be to look for information, especially when your Migraines or headaches are frequent. That's why this newsletter exists.

Subscribing to Putting Our Heads Together is easy. Just fill in the subscription box to your left; at the top of the left column of this blog.

Live well,

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Last updated June 1, 2010

Migraines and Medication Overuse: Video

MOH166If you have Migraines or headaches, hopefully, you know about medication overuse headache (MOH), aka rebound. In a nutshell, the use of any acute medication to treat a Migraine or headache more than two or three days a week can make matters worse by causing MOH. You can read more about MOH in Medication Overuse Headache: When the Remedy Backfires.

Sadly, too many people are never educated about this issue. Even neurologists sometimes don't know about it, so they don't warn their patients. Just this morning, I heard about a Migraineur whose neurologist told her to take an NSAID twice a day, every day. In reality, he was setting her up for MOH and sentencing her to a daily headache.

Maybe a video will help with understanding MOH better. Some of the information in this video, such as the number of Migraineurs in the US, isn't accurate, but the info on MOH is pretty good.

I hope this has been helpful to you. If you have questions or need more information, please let me know.

Live well,


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Medical review by John Claude Krusz, PhD, MD.


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Last updated May 14, 2010


Migraines, headaches, pain, and HOPE!

I spent last week in Dallas at Dr. John Claude Krusz's clinic, ANODYNE Headache and PainCare. Dr. Krusz and I have written Ask the Clinician for almost five years now, but this was the first chance I'd had to visit his clinic and observe him with patients.

Dr. K's patients were very gracious; all of them allowed me to sit in on their appointments. Listening to him review a new patient's medical history was a great reminder of how much other issues can impact Migraine, headaches, and pain. Dr. K. asks all of his patients about their sleep patterns and whether they or anyone in their family have a history of problems with thryoid, diabetes, or other endocrine disorders. Sleep is always one of the first issues he addresses, telling patients that good sleep is essential to their treatment.

Continue reading Migraines, headaches, pain, and HOPE!


Headache Stay Gone for Headaches and Migraines - Beware

For those of you who know me a bit, you'll know that the phone number 888-MYCURE8 is enough to set alarm bells sounding loudly in my head. The product associated with this phone number has been the subject of three SharePosts on our site, and it's time for me to respond.

The product in question here is Headache Stay Gone. (And, no, I will not link to their site here.) According to the site, the product  contains:

  • rosemary
  • peppermint
  • ginger mint
  • blue vervain
  • slippery elm
  • meadowsweet
  • nettles
  • basil
  • hops
  • white willow bark
  • bioflavinoids

It is stated on the site that "Headache Stay Gone is affordable and free from side effects." Free from side effects? That is truly just impossible. These ingredients certainly do have potential side effects. I'm not going to take the time to track down every ingredient, but here are some potential side effects and notes of caution for some of them...

Continue reading Headache Stay Gone for Headaches and Migraines - Beware.