Turning the Corner: Medicare Drug Supplements/Formulary will not cover Trileptal

[Shutterbabe]

Hello All: So with trepidation and much gratitude, I became eligible for Medicare a few weeks ago. Finding a drug supplement plan that covers my brand name medication, Trileptal, is not on any formulary that is offered. I looked at 24 plans! Only the generic version is available which did not work for me in the past. Trileptal is the only medication that has kept me relatively seizure free for the last two years. *Sigh* I have tried at least 7 anticonvulsants and am pleased I am on the right med now. The out of pocket price for Trileptal will be over $1000 monthly. I was paying $70 for 120 pills. I tried to get patient assistance from the pharmaceutical company. They denied me because I had purchased a Plan D Supplement and that my income slightly exceeded their requirements. I am currently in an appeal process but ye of little faith. This has been so stressful that my seizures have returned. Few people understand the financial and emotional strain this situation has caused me. Or the medical reality because changing anticonvulsants is not something I can risk at my age. Reaching out for ideas or a gentle word. Peace.

 

[BIGMAN131307]

I'm taking Trileptal, which without insurance would be close to $2000 a month. But several years back I was switched from generic to generic. Sometimes without notice from my pharmacy. During that time my seizures got worse. The only thing that gave me some relief was Trileptal.

So I discussed this problem with my then Neurologist. My neurologist agreed to get a Rx Waiver for me. Basically this Rx Waiver told my insurance company that it was medically necessary for me to only be prescribed Trileptal. From then on with each Rx I was issued Trileptal. On each Rx it's Trileptal [DAW] (Dispense As Written)

Correct Rx:

Trileptal [Oxcarbazepine]


Only once did I have an issue. That happen when the Rx listed the Brand Name & Generic in reverse order. On that occasion the nurse printed up the Rx wrong.

This is the wrong Rx:

Oxcarbazepine [Generic for Trilepal]

Because the neurologist had DAW on the Rx, the pharmacy had to issue the Generic legally
if I filled that Rx. Which luckily I spotted before signing for it.


Correct Rx:

Trileptal [Oxcarbazepine]


I hope this helps you.

 

[Shutterbabe]

Hi BIGMAN....Thank you so much for your response. I asked my doctor to help weeks ago. He knows my situation is dire. I phone his office twice a week but as it goes in so many medical practices nothing has been done yet to advocate on my behalf. I think I am going to go to his office tomorrow if I feel well enough (seized last night) and hand them a letter as a reminder....I hear you on the generics. I take a secondary medication to address nocturnal seizures. I tolerate the generic form but once in a while the pill is a different shape so I have to take an extra dose for effectiveness....I admit that I feel defeated. I only have so much energy and would rather be using it to enjoy my life. Having to fight for a medication that was once affordable- and my lifeline- equals inhumanity/ injustice to me. I know I am not the only one who has experienced this feeling of outrage and helplessness against the big pharma machine and bureaucracy. I have been told that I can buy Trileptal out of the country and this might be my path at some point. My gratitude to you. Wishing you well.

 

[seagull]

Thank god I NHS ,you had wait until Medicare insurance b4 treatment.i could give comment but I be kicked off for making that coment

 

[Nakamova]

Unfortunately, I think that while your doc can prescribe the brand Trileptal as medically necessary, it doesn't mean the insurance companies have to pay for it. I don't know about the legalities, but perhaps you could find a way to get it from Canada:
https://www.canadadrugs.com/products/search?utf8=✓&keyword=Trileptal&commit=Search

 

[Shutterbabe]

Hi seagull: Smiling. I suspect that your comment would echo my own thoughts!!!

 

[Shutterbabe]

Nakamova: Thanks so much for the link. I will check it out.... My doctor finally called me this evening. He said there are no guarantees that the insurance company will change their mind on my Trileptal costs even if he sends a Medical Necessity letter. I have given up all my illusions that anyone in the big wheel of pharma or health insurance is going to care. I still go to sleep each night feeling grateful that I have made it through so many difficult seizures over the years. Take care!

 

[BIGMAN131307]

Unfortunately, I think that while your doc can prescribe the brand Trileptal as medically necessary, it doesn't mean the insurance companies have to pay for it. I don't know about the legalities, but perhaps you could find a
way to get it from Canada:
https://www.canadadrugs.com/products/search?utf8=✓&keyword=Trileptal&commit=Search

No it's not a guarantee, but it is worth trying. You need to make a strong case as to why the generics don't work for you. Explaining how they make you feel, side effects, seizure relief (if any). Then detail how your condition improves when you're on the name brand. It's all a big game to the Drug & Insurance Companies. If you can get a strong ally to help in this fight, you'll be better off.

My doctor finally called me this evening. He said there are no guarantees that the insurance company will change their mind on my Trileptal costs even if he sends a Medical Necessity letter. I have given up all my illusions that anyone in the big wheel of pharma or health insurance is going to care. I still go to sleep each night feeling grateful that I have made it through so many difficult seizures over the years. Take care!

There is also Rx Prescription Help. IE:

Patient Assistance Programs for Trileptal

https://www.pharma.us.novartis.com/...ance/patient-assistance-foundation-enrollment

The Novartis Patient Assistance Foundation, Inc. is committed to providing access to our medicines for those most in need. If you are experiencing financial hardship and have limited or no prescription coverage for your medicines, you may be eligible to receive your Novartis medicines at no cost.

To be eligible, you must:

Be a US resident
Meet the income requirements
Have limited or no prescription coverage

Patient Assistance Program:

To provide you with the best possible customer service, we recommend that you or your physician call our hotline. You will be asked a few qualifying questions to determine your eligibility for the program, and if found eligible you will be provided with a temporary supply of medication while you fill out the patient assistance program application.

Please be advised that access to the medicines distributed through the Novartis Patient Assistance Foundation, Inc. is free of charge to all eligible patients. Novartis is not affiliated with any individual or organization that may charge patients a fee(s) to assist them in completing applications for our program. These individuals or organizations are acting independently of the Novartis Patient Assistance Foundation, Inc. and its affiliates and do not have Novartis' consent.

New Enrollment: To enroll in the Novartis PAP program select a product from the list below and follow the instructions provided:

Trileptal® (oxcarbazepine)

PAP Enrollment Process
Novartis Patient Assistance Foundation
1-800-277-2254

Enrolling in the Novartis Patient Assistance Foundation is quick and easy.

You or your physician can call Novartis at 1-800-277-2254, selecting the appropriate phone prompts. You can request a faxed application by choosing the correct prompt and entering a fax number. Applications can be downloaded in a PDF format by following the links on the right hand side of this page.

You will need to complete the upper portion of the application, and include your signature, the date and a copy of your most recent Federal Tax Return.

Your physician should complete the lower portion of the enrollment application and attach a prescription for a three-month supply. Focalin® XR and Ritalin® LA are supplied through a pharmacy card.

Qualifying individuals are eligible for up to one year of assistance, or until a prescription drug benefit becomes available to you. Upon approval, a 30 or 90-day supply of medication will be shipped directly to your physician. For Focalin® XR and Ritalin® LA, a pharmacy card will be issued.

To obtain an additional 30 or 90-day supply of medication, a refill request form (included with each shipment) must be submitted along with a new prescription, or your physician can call 1-800-277-2254 to request a refill. For Focalin® XR and Ritalin® LA refills, you must obtain a prescription from your physician and take the prescription and your pharmacy card to a retail pharmacy for a refill.

https://www.pharma.us.novartis.com/....com/files/PAP-Pharma-Application-English.pdf

Hopefully you and you doctor can get this to happen for you. It may be a temporary fix,
or possibly renewed each eligible year. You need to ask your doctor.

I hope you feel better.

 

[Shutterbabe]

BIGMAN: Hello Again. Thank you so much for all this information! It is all a bit daunting. If I get a positive response from any of these links, I will let you know. I truly appreciate your concern and help. Sending the best of vibes. Be well.