Re-upping with your Disease-Modifying Therapy: Smooth Sailing, or Getting the Runaround?

When January rolls around, it is time for my neuro to renew my DMD for another year and time for me to re-apply for co-pay assistance. This once-a-year task should be a smoothly-coordinated process that requires only a few days to complete, and I’m certain that one day it shall be—as soon as Jupiter aligns with Mars, social media only attracts gracious, thoughtful comments, and ISIS recants its nihilist agenda.

(While it is true that every winter, upstate New Yorkers and New Englanders report that Hell has officially frozen over, they are the only ones that do—so it doesn’t really count.)

I can only describe to you my experience re-upping this January, compare it with last January, and offer some tips that might help you manage this process with a minimum of confusion. (A list of resources for co-pay assistance can be found at the end of the article.)
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First off, if you apply for co-pay assistance for your disease-modifying therapy, you are doing that via the patient support arm of the pharma company that makes your drug. For example, I take Tecfidera, which is manufactured by Biogen idec and whose patient support service is MSActiveSource. I submit an application for assistance to them along with financial documentation. They do not send a reminder to reapply each year, by the way, I have to remember to contact them and start the process, preferably in December--which is, of course, the worst month of the year to remember to do anything. So it hits me in January and, panic-stricken, I call MSActiveSource as soon as I think of it. (Funds are limited, so the earlier you apply for assistance, the better for you.)

The second entity in the process is the specialty pharmacy. My Medicare drug plan chooses the pharmacy, and mine is OptumRx. When it is time to renew, their job is to fax a prior authorization form to your prescribing neurologist as well as a request for the prescription itself.

The third entity is yourneurologist’s office. They need to complete and fax back the prior authorization and the prescription.

Ideally, these three entities should freely share information with each other and with you to update the status of pending applications, authorizations, prescriptions, and shipments. In reality, it is up to you, the patient, to coordinate this and follow up with each entity to make sure that:

  • The co-pay application was processed,
  • The pharmacy faxed your doctor the prior authorization form, and
  • Your doctor sent the pharmacy a prescription for the year.

The last thing to do is to call the pharmacy and set up a date to ship your medication.

This year, I didn’t initiate the process until the middle of January since I was preoccupied with moving into a new apartment. As of today, January 24, 2015, the process is now complete, my having scheduled the drug shipment yesterday. So this year, it took two weeks to secure financial assistance, call the pharmacy about ten times, and call my neuro’s office five times to make sure everything was in place.

Compared to last January, the number of times I had to call each entity to follow up, receive incorrect info, share the info with the other two entities, get corrected info, share the corrected info, and get bounced back between all three was about the same. There was, however, one improvement: Last year I ran out of medication for an entire week before receiving my first shipment of the year. This year, I have enough medication to get me through until my shipment arrives. Significant, but my stress level dealing with all the entities’ misinformation and runaround had me screaming at a pharmacist one day at such a high pitch, only Beluga whales could hear me. Don’t worry, I’m okay, I take an ACE inhibitor and a diuretic. They can drive me to the edge of insanity and I’ll never stroke out. More proof of the miracles of modern medicine. They make drugs and gadgets that help us withstand their Kafkaesque bureaucracies like bionic superheroes, and later, we die of “natural causes.” It’s almost enough to make me want to buy stock in biotech. Almost.

I know what you’re probably thinking. Something like: but hey, it’s only once a year. How bad could it be?It’s like giving birth. Afterward, the mother forgets the pain. 

The thing is, you will forget all about it until January next. That’s how they getcha.

How did your re-upping go this year? Was it smooth sailing—or… ?

*Resource List of Co-Pay Assistance Programs (current as of 1/23/2015):

*Pharma co-pay programs are for commercially-insured patients only. If you have Medicare or Medicaid, call the same numbers to apply to charity organizations that will fund government-insured patients. Either way, they’ll get you covered.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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