Resolving Insurance Problems Demands Patience and Endurance

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.

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.

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.

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.