Tecfidera & Cost

[kelleyb73]

Hi all. I have been on Tecfidera for approximately 15 months. I was diagnosed with RRMS in 2002. Thankfully, my body responds to the meds - but I cannot afford them. I started on Copaxone for 5 years, was stable. Had a relapse and started Rebif. Did well on it, but running out of places to inject. I was SO excited when Tecfidera was approved. The cost is obviously an issue for everyone. I was able to get the first year free, which I am very thankful for. After a very stressful renewal process, I qualified for the copay assistance program. My copay was almost $3,000 per month as my insurance pays 50%. Just found out today that the cap is almost up after 3 whole months on the program. I have shed my tears and had my pity party, now I have to figure out what to do. We are not low income; both my husband & I have good jobs, but we cannot possibly afford $3,000 per month even if we wanted to. Has anyone had success with other programs? At this point, it looks like I will be off my meds.

[HobbitHead]

What copay assistance program did you go through? Did you contact tecfidera and ask about their Active Access program? Or is that the one you are talking about?

[nosrepmodnar]

Tecfidera drug manufacturers have an assist program. Your copay should be capped at $10

[OrangeMetal]

This is very unfortunate. To the other posters, I think the OP is saying she was on the 10 copay program but it maxes out at 3 months.

I'm sorry your copay is 3000. So your insurance has that copay no matter what? Does the patient assistance program help of three months go towards your deductible? (15k)

What do others here on this board do? Is this a matter of a type of insurance? Do other people here have lower copays? This is simply not fair. I read that other posters here were helped by the copay program covering their deductible and I guess they didn't have as large copays as you. Would other folks here suggest that this is an insurance issue and to find other insurance with lower copay? I'm stumped with this. I feel there has to be a solution. Anyone out there ? Marco?

[rsinger]

copay

According to what I understand the tecfidera website indicates that you can re-enroll for 0 copy every year. It's impossible to pay 3000.00 monthly for medication. I would contact Tecfidera asap.

[kelleyb73]

Yes, you can re-enroll every year. The difference in the first year and this year is Tecfidera was not covered at all by my insurance on year 1, so they paid the full price. Year 2, the insurance pays 50% which is almost $3,000.00. The copay assistance program has a cap of $10,000 so there is not enough left for my 4th month. I called Active Access and I do not qualify for any other assistance.

Feeling pretty down. I have called my neurologist to see what other options I have. The worst part for me is they are willing to pay all of it with no coverage, but when my private insurance will pay 1/2, they will pay no more.

[OrangeMetal]

Is there a way to research what insurance doesn't have a high co-pay?

Other folks here on this board - if you have insurance covering this med, is your copay lower so you do not have this issue?

I'm wondering what other people on this board are doing as I have not heard of this.

There has to be a way to help you. Does anyone have other ideas? Does this mean one needs supplemental insurance? Finding one without a high copay?

I hope others can chime in. This individual is in a dire situation here.

[kelleyb73]

I appreciate your help. Most meds are really cheap - it is a private self funded plan through the hospital (my husband's employer).

I talked to my neurologist and they are going to check with their reps and see if they can do anything. If not, we may try the 3x week Copaxone. I did well on it and Rebif.

I'm really disappointed with Tecfidera. I was so looking forward to it, but it's hard for me to support them after this.

Thank you all!

[OrangeMetal]

I was going to ask you what insurance it was but didn't want to be too nosy. It seems that a lot of the "big name" insurances have had some proof here on this board that they cover Tecfidera. I've seen more positives with Blue Cross Blue Shield on this board. And someone else chimed in on another thread that Tec is covered under one of the BCBS plans on the ACA marker which I did not realize.

I'm trying to do research myself and will let people know what I find out. In the past some folks here have said they have insurance that had their co pay assistance program pay their deductible for the year. Like those on Tec, they sign up for the copay 0 program and then they apply it to their deductible. But it sounds like your issue is aside form that - it's not a deductible issue but a copay issue? Is your deductible high and then the copay on top of it?

This really sucks and I hope we have some more folks here chiming in on what insurance they could recommend. Knuckle said he saw Tec covered in a BCBS plan in PA. That's in the General Questions "Insurance for 2015" recent thread, fyi.

I would think your neuro should be able to help out somehow. And I'm surprised active access won't help more. I don't know what your income is and don't want to ask/be nosy, but it seems they should still be able to help if you can't afford it. I hope you can keep us posted.

[jersey4ever]

Do you have an out of pocket max?

So we have been insurance shopping as I am thinking of leaving my job and I carry the insurance.

I also can only find plans with 50% medication coverage...but most have an out of pocket yearly maximum spend which drug costs do count toward. I will still be out like $12,000 a year for Tec... which I will have to find a way to pay.

But I am seeing the same basic problem. Drug cost $55,000 a year. 50% of that is 27.500. Copay assisstance seems to cap at either $10k or &15K - have not been able to figure out when it is one vs. the other. This still leaves an out-of-pocket of $12 to 17.5K But at least if you have an out of pocket max spend of $12K - you know it will end there - and that will inclucd all other medical co-pays and deductibles.

I have found some plans do not count drugs toward your out of pocket max.

Have you called your insurance to see exactly where you stand?

I know this totally sucks and seems so wrong...how can we be denied access to a drug that is saving us becuase our insurance will pay ONLY $27,000 for it....

[Marco]

Copay/Coinsurance Assistance Programs

I am sorry to hear that you've been trying to manage such a financial burden to maintain your health. Does your insurance plan have a maximum out-of-pocket for prescriptions? I would call their benefits line and double-check your benefit. If the plan is employer sponsored I would go to the HR benefits administrator and explain the situation to them. The HR benefits person can call their contact and find out of there are any other options. If nothing else, the plan administrator will know that you are paying $$$$/annually for your medication. HR needs to know the hardships being caused by their current plan.

Each disease-modifying therapy for MS has a patient assistance program to help with the cost of the medication for people who are uninsured/underinsured. For Tecfidera, MS ActiveSource is the assistance program. You can reach them at www.msactivesource.com or call 1-800-456-2255. I would call MS ActiveSource again and STRESS that you are going off Tecfidera because you have already spent $$$10k or whatever this year and can no longer afford it. Explain you don't need a temporary reduction, but you can no longer afford even $3000/annually. Push them ... they are have ability to fix this for you. They have benefits specialists that do not answer the phone so do not let the first person that answers the phone dissuade you.

Your neurologist may also be able to talk to the Biogen drug representative about your situation. This may carry more weight than you would imagine, especially if the neurologist has a decent patient load.

In addition to the above resources that you should explore.
There are also a number of nonprofit organizations also offer programs that may be able to help you with DMT costs.

• The Assistance Fund - 877-245-4412 http://theassistancefund.org/patient-services/
  
• Chronic Disease Fund - 877-968-7233 http://www.cdfund.org/
  
• Patient Access Network Foundation (PAN) (only for Medicare beneficiaries) - 866-316-7263 http://www.panfoundation.org/
  
• National Organization of Rare Disorders (NORD) - 800-634-7207 http://www.rarediseases.org/patients...ent-assistance
• HealthWell Foundation (only for Medicare beneficiaries) – 800-675-8416 http://www.healthwellfoundation.org/

You may find programs that help with other medications (to manage your symptoms or treat other conditions) on the following websites:

• Needymeds http://www.needymeds.org
  
• RxAssist http://www.rxassist.org/

You could also consider a crowd-funding site, but I have limited experience with them. A stop-gap measure would be helpful, but you really need a permanent solution so you don't end up in the same boat next year. If all else fails, you might consider looking at the Obamacare plans come the open enrollment period for a plan that covers Tecfidera. Some companies will even pay you more if you opt-out of their insurance plan to help you pay for a new plan.

I wish you well and hope you will keep us informed of your progress.

[lhspirited]

I'm reading this thread, and also thinking about the 60 minutes story last night on big pharma, and not understanding. The Affordable Care Act, aka Obamacare states that (from Healthcare.gov):

Out-of-pocket maximum/limit - The most you pay during a policy period (usually one year) before your health insurance or plan starts to pay 100% for covered essential health benefits. This limit must include deductibles, coinsurance, copayments, or similar charges and any other expenditure required of an individual which is a qualified medical expense for the essential health benefits. This limit does not have to count premiums, balance billing amounts for non-network providers and other out-of-network cost-sharing, or spending for non-essential health benefits.

The maximum out-of-pocket cost limit for any individual Marketplace plan for 2015 can be no more than $6,600 for an individual plan and $13,200 for a family plan.

[OrangeMetal]

But does the out of pocket INCLUDE medications? Also, does "cost sharing" - which is excluded from the deductible or what ins. pays according to the above post, - mean that you can still be held to pay 50 percent of your drug?

And is this out of pocket limit ONLY for ACA/Obamacare plans or ALL plans in the country?

If we only had to pay 6000 max in deductibles then why are some of us finding here we are being asked to pay more than that for a drug? If Tec is 60k, then isn't the max you would pay anywhere anytime 6000k according to this law, and if so, then wouldn't the drug company pay that if they max it at 15k assistance? I'm so confused.

[lawnerd]

I don't know all of the details about "Obama care".

I do know that Marco's post contains some very good information.

If you are having problems paying for Tecfidera, I second Marco's suggestion that you call MS Active Source.

The people at MS Active Source should be able to help you.

Good luck,
lawnerd

[Marco]

Insurance companies use drug formularies to determine what benefits may apply to a particular drug. The formulary is normally updated annually but a committee of pharmacists and physicians. New drugs approved during the year may or may not be added to a plans formulary. A formulary must have at least one drug in each category as defined by the government.

Drugs on a formulary are normally grouped into tiers. The tiers are then tied to a graduated pricing structure. Tier 1 drugs have the lowest copayments and the patient cost normally increases as the tier increases.

Here is an example of a formulary tier:

• Tier 1 preferred generic medications.
• Tier 2 non-preferred generic medications.
• Tier 3 preferred brand name medications.
• Tier 4 non-preferred brand name medications and Preferred specialty medications
• Tier 5 specialty drugs

If your prescription drug is not on the formulary, it is generallly not covered, and not subject to copay’s or factored into any out-of-pocket maximum. For drugs NOT on the formulary the patient is normally responsible for 100% of the cost. Where possible, ask your doctor to prescribe medications on your drug formulary. Alternatively, your doctor can also seek an exception to the formulary to have a drug approved and benefits paid.

Prescription Deductible:
Some insurance plans require the patient to pay a specific amount of money for prescriptions before benefits start. Deductibles run per calendar year. For instance, if your deductible is $1,000, you must pay $1,000 out-of-pocket for covered prescription before your insurance begins cost-sharing with you.

Prescription Co-Payment:
The co-payment is your share of the cost of a prescription. For example: a generic drug (Tier 1) may cost $5 and a brand name (Tier 3) drug cost $20. The remaining cost is paid by your health plan.

Pre-Authorization:
Certain drugs are normally limited or restricted requiring special procedures before dispensing. These drugs may have specific safety issues, have a tendency to be abused or may simply be expensive. In these cases your doctor needs to initiate the process for drug approval. If the insurance approves the medication it will be limited for a specific time-frame. Afterwards, your doctor will have to resubmit paperwork for you to continue taking the medication.

Out-of-pocket Maximum:
The out-of-pocket maximum is the maximum amount of money you pay toward the cost of your healthcare each year. Not all healthcare expenses count against your out-of-pocket maximum. Plastic or elective surgery is a good example of a medical expense that may not count against your out-of-pocket maximum. Plans purchased through the Affordable Care Act Marketplace have mandated maximums. https://www.healthcare.gov/glossary/...maximum-limit/


It's not uncommon for MS patients to have annual prescription costs near $100,000. Because of this we have to carefully choose our health care plans. If possible, try to find a a health plan that has all of your medications on the drug formulary. Make a list of all of your medications and check them against the drug formulary for the insurance plan. Then calculate your annual drug costs including any deductible, coinsurance, copayments and any out-of-pocket maximum. If you qualify for Medicare the website has a plan finder where you can type in your medications. http://www.msworld.org/forum/showthread.php?t=134673.

I hope this information is helpful. I am not an insurance expert, but I do notice who has their hands in my back pocket!