Resolving Insurance Problems Demands Patience and Endurance

Laura Kolaczkowski avatar

by Laura Kolaczkowski |

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Botox insurance hassle

Engaging Thoughts

After my recent insurance experience, which I share here, I never again will wonder why some people give up on claiming their medical benefits.

I have received Botox treatment for spasticity of my quad and hamstring muscles. This is an FDA-approved use, but to get this treatment there has to be a prior authorization from my insurance company, which happens to be Anthem Blue Cross/Blue Shield.

Setting the scene

On Dec. 22, the head MS clinic nurse, Terri, confirms my shipment of Botox will arrive in the clinic on Jan. 3.  On Jan. 5, I arrive at the clinic, which is a 90-minute drive from my home, only to be told there is no Botox for me and Terri says she will figure out what happened. I receive more calls and emails in the next few days telling me she is still working on it.

New Anthem insurance cards arrive in the mail Jan. 11 and I notice there is a new policy number, even though it is still the same Anthem insurance. No one can really tell me why these new policy numbers were issued.

The next day I wake in the wee hours thinking this new policy number must explain why my Botox was not shipped. I call Anthem, explain the problem, and am told Botox has been approved and the prior authorization has been sent to CVS Caremark specialty pharmacy, and I am even given a reference number to use if there are any other questions. I email Terri this number and figure it was now resolved.

The next week, I’m at the clinic for my infusion and talk with Terri, who is still chasing my Botox. She can’t locate anyone at Anthem or CVS Caremark who can tell her my status, and has even been told my insurance had been terminated.

You’ve got mail

When I get home later that day, I find a letter from CVS Caremark telling me they haven’t been able to contact me (if they had picked up the phone and called me I would have answered!), and they need a prior authorization from Anthem, which I had been told the previous week had been sent.

The mail also had a nine-page letter from Anthem telling me my request for Botox has been denied. The letter tells me of this rejection in 15 different languages, including Cushite-Oromo, Romanian and Pennsylvania Dutch. (I had to look up Cushite-Oromo; it is a language common in regions of the Horn of Africa.)

Knowing it isn’t fair for to expect Terri to do all of this when it is my drug treatment, and not one to accept “no” easily, I declare the chase is on. I call CVS Caremark and their representative tells me they have no record of me or my prescription or my prior authorization. She promises to escalate this and have an answer for me by the end of the day, but recommends I also circle back to Anthem.

So, the pursuit continues. I call Anthem and, after pushing way too many option keys, I finally talk to a  person, Janice.

Who has my mail?

Janice listens to my story about the MS clinic, missing prescription information with CVS, no Botox, and much more of my story. She can see my insurance. She can see the request for authorization and she can see that an authorization letter had been sent to CVS and tells me I also should have a copy. Incredibly, this information is not moved electronically, but sent through the U.S. mail system and we are at the mercy of  their delivery and someone on the receiving end to open that letter and process it quickly. Why this is not done electronically is a question for another time.

Moving on

Just before hanging up, I ask Janice to check my policy and she finds that as of Jan. 1, my specialty pharmacy rolled over from CVS Caremark to Accredo (a division of Express Scripts). There is no explanation to be found for why, on Jan. 12, CVS Caremark was sent this letter from Anthem when it should have gone to a different company.

Janice places a conference call to Accredo, where we dial our way through three representatives who were clueless as to what we were saying or how we needed their assistance to figure out our next step. There was a major disconnect because the Accredo reps kept saying Anthem needed to do the prior authorization and was unwilling to hear that had already been done. I gave them my Anthem authorization number, but was told my number didn’t have enough digits to be their number, even though Janice verified this was correct.  This was repeated over and over. We could not get it through that a recent prior authorization had been done, but was sent to the wrong pharmacy, and we just needed their help to fix this.

Stay in the moment

Through this all, I keep reminding myself to take a deep breath, make my point clear, and don’t get excited (translation – don’t get mad!). Recognizing we were getting nowhere, Janice and I agree to disconnect with the Accredo reps, who couldn’t understand our questions, and start over. I confided to her that I was not sure if I should laugh or cry at this point, but I silently vowed I would not be broken and I would prevail.

I found an Accredo specialty pharmacy number online for its multiple sclerosis division and we made another conference call, and this time Janice suggested I take the lead. I took a deep breath, cut to the chase and finally we got some answers — after being on phone calls for almost two hours. I can’t begin to account for the number of hours Terri from the MS clinic has put in on her side of this problem.

Who dropped the ball?

It would be easy to say the new insurance number caused the problem, and it partially did because it made me disappear in the records. But it doesn’t explain why Anthem sent the letter to a specialty pharmacy I am not allowed to use. No one can tell me how Accredo had a refusal to cover letter in my file, even though I am not in their records. And it sure doesn’t help me to understand why Anthem can’t just correct the problem on its end, readdress the letter to Accredo, and move this information over to the new specialty pharmacy.

The new solution

The whole process of requesting my Botox has to start over from scratch. The work Terri and the doctor have done to this point is worthless and they have to begin anew with a request for prior authorization and a new prescription. And I am still without my treatment until this is sorted out.

As I write this, I wonder at what point do most people just say the heck with it and stop trying to get their treatment? When we talk of the demands put on our medical providers and how much time is consumed by paperwork, think back on this story. I’m sure I am not the only person Terri has to help sort out insurance coverage, and there are Terris in clinics all over the country doing the same.

There has to be an easier way for consumers and providers to get their insurance needs answered, and it shouldn’t involve hours of phone calls, missed treatments and great frustration.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.


MS avatar


My Terri is named Shawna, and countless names of others I don't recall within the pharmaceutical company of my chosen DMT. There is ongoing shifts between the specialty pharmacies between changes, mergers, and acquisitions...oh my!

My struggles with payers and specialty pharmacies have been a constant battle since diagnosis. Regardless of insurance company changes, the battles between all parties follow me like the Black Plague. Definitely not an endearing term, but that is what it feels like. Like you, I accept the challenge with ferocity. When the last payer attempted to drop coverage mid-year, the stress sent me to my bed for two days with agonizing swollen joint, and sleepless nights of pondering how I'm going to get what I needed. What I needed was re-instatement so I could get my medicine and continue my continuity of care. As I laid in bed, mulling over various course of actions taken, what did work and what hadn't, an epiphany overcame me. I took my battle against the payer to Twitter calling them out on dropping our coverage. It worked. There was no way for them to hang up on me, as they had been doing, and requested I direct message them some basic information. I received a phone call within four hours telling me everything was resolved and they would retroactively review the previous month's claims for coverage. Moral of the story: never underestimate the power of social media.

During that time, I needed support from others, merely to cheerlead me on, I wrote about my battle on MS message boards. After the dust settled, I was declared the "insurance fight queen". Not a title I abhor or dislike. Now when someone is having a battle, another member will tag me and I step up to the plate and offer assistance with what worked for me. Only one followed the method I used, and guess what? It worked for them as well. The others that did not were the ones who had given up. They merely wanted to be heard, but didn't want to take any further action to continue to fight.

Advocacy for ourselves should not be this difficult. My new payer for this next year, encouraged by my "Terri" for insurance needs, appears to be working smoothly thus far. Only one small hiccup with the specialty pharmacy, which between the pharmaceutical company, specialty pharmacy, and myself, had resolved within thirty minutes. I sincerely hope the rest of the year will continue smoothly for me.

Hoping for a healthy, stress free 2017 for all.

P.S. Ironic that my first initial and last initial is literally MS. Maybe my parents were a tad too prophetic when naming me.

Linda L Halvorson avatar

Linda L Halvorson

Thanks for sharing! I went through similar trials a couple of years ago when my local carrier dropped my pharmacy the week of selecting my advantage plan. It was a national chain which had a specialty pharmacy. When I asked if the specialty pharmacy was also dropped, they didn't know but would get back to me. I went online and found a new plan by the end of the day.

The next battle after I got the new plan was to get the medication Ampyra despite not being able to walk the required distance and speeds. I have fought for coverage successfully since.

After going through intensive physical therapy the last 8 months I am able to walk 50 steps in less than a minute using a wheeled walker. I have to renew my prescription in two weeks

I told the nurse yesterday that I won't be surprised if the policy requires me to run next year. Sigh.

Tim Bossie avatar

Tim Bossie

Wow Linda... you are an example of incredible courage and perseverance in the midst of difficult personal trials. What an inspiration you must be for so many! We hope that the road gets a little bit easier soon.

Agnes Weessies avatar

Agnes Weessies

I empathize with you. But insurance problems can go further back. Start with a person who has had weird symptoms seen a Dr. numerous times, and be told all they need to do is lose weight, and start exercising, get your eyes checked and don't sweat the small stuff. First step is seeing a Dr. once your symptoms have gone to the point you can;t work, or have lost your job. Here in the USA that means you don't have insurance. each state is different, but here in Florida you hit a major snag in the Obamacare insurance. to get the insurance you have to make 14K a year. If you don't make that, you have to pay an outrageous amount just to get the coverage that has an over 6K deductible. Now if you are in that zone of 26 to 65, just try and get insured.

If you are lucky and this is horrible to contemplate, you go to an emergency room when the symptoms are such that you can no longer walk, eating is difficult, and you can;t control your bladder. IF and that is a big IF, you might get a Dr. that sees the symptoms for what they are. Then they might if the hospital emergency room allows it, do a lumbar puncture and an MRI to confirm the fears. Now you might have the diagnosis. Your nightmares are just beginning.

Next step is getting the Medicaid coverage. Don't give up. even if you are denied you have the right to a hearing. Demand the hearing in a face to face meeting. You can be ignored if it is an over the phone or via a computer hookup. After months of fighting you may get approved. Then you have hurdle #2.

The next step is social Security. It is just as bad as medicaid people. again don't give up. If you have to escalate the problem above the lowest worker who is giving you problems. Make sure everything you send in is registered and has a returned signed receipt. document every person you talk to and get their ID #. Good records will help immensely. You may now be 4 months from when you got diagnosed.

Next step is getting a primary care Dr. Then you can get a referral to see a neurologist. You might think now you can finally get some sort of treatment. NOOOOOO! Medicaid doesn't have neurologists. They all dropped medicaid patients once the Affordable (hahaha) care act went into full implementation. Not one neurologist will take you. Yet they may still be listed on the medicaid insurance directory. After another few weeks of closed doors, you might finally do a search on line to find a complaint form to send to medicaid. The complaint forms are there. Fill it out. If you are lucky your insurance provider from medicaid will do an out of plan exemption and allow you to finally see a neurologist.

You will see the neurologist. You think it is great. You have a plan of treatment all in place. You are scheduled for your first treatment. You are happy to know something is going to be done for you illness. Think again. Like the lady who wrote the article above, you might be denied. Most likely you will be denied by the nurse practitioner for medicaid that over sees all the drugs for your states medicaid. That person wants to review the treatments to see if the neurologist knows what they are doing and is this the right treatment.

You might even end up in the hospital with another exaserbation of your illness. This might result in another MRI to see what is happening. Your initial lesions on the brain will most likely have multiplied. Yet bureaucracy and savings for the insurance company decide your life. Where once you were normal seeming. Maybe even a bit clumsy, you are now relegated to a wheelchair. You have gone from vital to victim of the system.

Good luck to all who do not have insurance to begin with. You have a battle ahead.

Elena avatar


Laura, as I read your column the hair on the back of my neck stood up. It hit so close to home. I can empathize completely. I was diagnosed with MS on December 31, 2015. 2016 was nothing but a battle every month with Anthem, Express Scripts, and the companies that did my infusions. I kept a record of every person with whom I spoke and even a record of how long they kept me on "a brief hold." I have an entire yellow pad that contains the notes of all the telephone correspondence.
I have come to accept that my battle is not just living every day with MS - it is also a battle to get the treatment I need and get it paid by insurance.
I am an assertive person who has the life experience and education to self advocate.
I feel sad for those who don't have strength or patience to fight the insurance battles along with their disease. I wish I could say I believe it will get better... but I do not believe it ever will.

Kim avatar


I have insurance problems also. I also have anthem/bluecross. I totally understand your dilemmas. I have experienced the insurance problems, waiting on the phone and having the cognitive issues while I am fighting to get my meds covered.
I was forced to take to take my retirement out (and get penalized for early withdrawal) to live on because it took so long to get my disability. Now I have to apply for Medicaid because I am on Medicaire and no longer get financial assistance for my huge copays. And with Medicaid, you can have no money in the bank, which requires me to get rid of my retirement,or use it for my copays. I get 875 dollars a month to live on and the copay for my Ampyra is $400 a month, not to mention the cost of DMT's which thankfully are covered until the end of the year. I am being forced to piss it away what I have left on my retirement on my copays or get it covered by Medicaid. I feel I am being forced to being totally reliant on the government/drug companies. Tell me the government and and the drug companies aren't in cahoots together. I feel the only answer to our problems is to find an alternative cure for our MS and use it.


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