How I Lost My Drug Copay Funding and What You Can Learn from It
Early January is the time I re-enroll in the PAN Foundation’s copay assistance program for my MS drugs, Tecfidera and Ampyra. I have Medicare insurance, so private charities are my only alternative. In past years I called to re-enroll and everything went smoothly. Not so this year. Everything that could go wrong, did.
Words of denial
First of all, I enrolled online rather than calling. I got an email on January 2nd announcing that funds were now available. Immediately I went through the patient portal and followed the instructions, breezing through the eligibility screening by typing in my government insurance and annual income. I passed with flying colors and hit the send button. The words of denial didn’t make sense to me. You already have an active fund that hasn’t yet expired. If you’d like a list of other resources to apply to, please click here and we’ll email it to you. I printed it out. Then I drilled down to my account info and saw my 2017 fund status. This was just as confusing.
Spending hours on hold
Tecfidera funding was due to expire on January 13, 2018. Ampyra funding had already expired. But so what? I was re-applying for 2018. I called customer service and heard a canned message stating that due to high call traffic, assistance might be delayed. I stayed on hold for 45 minutes before hanging up. But I called back. This was too serious to put off for another day. Two hours later, a weary young male voice came on the line. He apologized at length about the wait time and told me the website had crashed, then asked how he could help me. I explained my problem and he asked to put me on hold while he attempted to access the website for my information. When he didn’t return after a half hour, I hung up. I’d try again tomorrow.
Funds were no longer available
But the wait times were just as bad the next day. Over the next couple of days I tried numerous times to re-apply online only to get the same denial. Phone wait times put me off. I got the bright idea that I should wait until the 2017 funding expired on January 13th before I’d call and try again. So I backed off for the next week or so. During that time I checked every foundation on the resource list and found no other organization with MS funds. On January 14th I tried once again to enroll for a PAN foundation grant only to get a message that funds were no longer available. I called and got through to someone immediately. It was true. But how could it run out after a week or two? Funds had always been available into February during past years. She explained that they received so many requests that the fund ran dry in a short time. No wonder there was a run on your grant, I told her, I just went through your list and there are no other sources for MS drugs. Not anywhere. Then I asked why I’d been denied.
Her answer made me hit the roof
“You applied through the new patient portal. You should have applied on the re-enrollment page.”
“What?” I bellowed. “What re-enrollment page? There’s only one patient portal!”
“I can transfer you to someone that can explain where it is.”
“What good will it do at this point?” I retorted. “There’s no money left! Besides, I’m too angry to talk to anyone right now.”
“I can put you on the waiting list for the next grant. You’ll be the first one.”
Stress of losing access to medication
I agreed to it through clenched teeth, trying not to erupt. “This isn’t fair,” I began, my voice rising. “Your system crashed because every MS patient on Medicare that lost their copay funding descended on you, the only source out there! Don’t you understand that I’m screwed? And it’s not my fault! Your error alerts weren’t instructive and I couldn’t get through to you on the phone to straighten it out. I have two weeks of Tecfidera and Ampyra left. After that I’ll have to stop taking them. I’ll be okay off Tecfidera, but Ampyra makes me able to complete an entire shopping trip and still stay on my feet to put the groceries away!” When I stopped to take a breath, she said:
“I can email you a list of other charities to check.”
“Lady,” I boomed with a nasty rasp, “I’ve already gone down that list. Nobody has money for MS drugs. Besides, your list isn’t very good and needs to be updated.”
“We send it to you as a courtesy,” she replied.
“It’s mostly a waste of time,” I shot back. “All but four of the contacts are drug company copay assistance programs for commercially-insured patients only. We MS patients only come to you if we have government insurance. There is one exception to that for one of the MS drugs, but it isn’t mentioned on the list. I can tell whoever compiled this list didn’t follow up—and it should be updated at least yearly. I can create a better list and annotate it.” For a fee, I told myself. You owe me.
“I’ll have someone email you about that,” she offered. I didn’t care, I was too pissed off. Maybe later I’d follow up.
So that’s the end of the story. At this writing—1/28/2018—I’ll run out of meds in three days.
I’m not alone
There are many MS patients out there like me, going without their drugs. Either they couldn’t find funding or they don’t know there is such a thing. But you can learn from what happened to me.
Simply put, when you find a program with available funds, call them and don’t give up until you get through to a customer representative. Enrolling online can be fast and efficient, but if you get a strange message, call them and find out exactly why. Do not drop the ball like I did. You might spend many hours on hold, but you’ve got to do it if you want a fighting chance at getting assistance. It’s your job to put in the effort. Nobody will do it for you.
For a list of copay assistance programs that I painstakingly compiled and annotated myself, see my article titled: Copay Assistance Programs for MS Drugs. Most of the contact info is from the NMSS and the MSAA, the most reliable and up-to-date sources out there.