Insurance question

[Gradyboy]

I am currently in treatment for CLL with Gazyva and Venclexta. I just was looking at my explanation of benefits and it looks like my copay for the Venclexta would be over $4000 per month. I am currently getting copay assistance from the manufacture, but my question is what happens when you are on Medicare in the US? If I relapse and on Medicare at the time do they cover any of these treatments? Does anyone mind saying what their copay for their meds is? I could never afford to pay thousands a month for meds. What do you do? I am 61 and still covered in my employers plan but I would like to retire someday. How do you navigate these cost? Now I am having a whole new panic attack.

[johnliston]

If your now on Medicare that $4,000 is probably just for the first month, after that you will be thru the donut hole and monthly payments will be much less. Next year (2024) there will be no more copay after the donut hole, so total for all med on Medicare will be around $3,400 a year. The year after that drug copays will cap at $2,000 a year for all drugs together for people on Medicare. and you may still be able to get assistance.

john

[Gradyboy in reply to johnliston]

Thank you for your reply. I am on employer insurance now and not retiring for another couple years. I just worry about the cost once I don't have employer insurance. I can afford 4000 a year but not per month.

[lankisterguy Volunteer]

Hi Gradyboy,

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When you switch to Medicare ( A, B, & D) the drug companies are currently prohibited from providing discounts or other financial assistance. But there are non profits that receive funds from the drug companies and then provide copay assistance.

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Here are links to several explanations of that process:

A pinned post on this page: healthunlocked.com/cllsuppo...

SNIP: "It was incredibly easy to obtain the coverage- since the NY Presbyterian Queens Pharmacy did all the work, and I didn't even know which agency was providing it until the attached card arrived today.

In 2015 ONCO-360 arranged my Ibrutinib copay with PAN (Patient Assistance Network). And since 2016, Genentech provided my Venetoclax at no cost when my previous Part D insurance would not cover Venclexta "Off Label"

-So if you are facing a copay, ask for help actively and don't be shy.

and some answers to questions in reply to the posting.

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

-

Len

[OSUfan in reply to lankisterguy]

Help from grants in USA is tied to your income for many drugs. In my case, for Calquence, there was no grant if adjusted gross income was above $86,000 for a family of two. My annual cost on medicare Advantage plan came to almost $12,000.

[wizzard166]

Hey Grady

I'm a Medicare insurance agent, so I of course can educate you in advance on that matter. What I will say here however will change quite a bit in the four years until you enter Medicare. I can at least educate you on what it would be like today.

Very important for you to understand is that the Patient Assistance Programs, such as the one from Genentech for Gayzva, will not help people once they leave Commercial Insurance programs. They view going on Medicare as making you ineligible for their program. Most of these companies however when asked, will say they do have help available from Grant Programs that you might qualify for, but its an entirely separate process from their small Co Pay cards etc. If however a drug of theirs was not covered by Medicare, then they might let you stay on their program.

Gayzva is not a prescription pill type of product, as you are aware, and instead it is an Infusion meant to go along with a prescription product such as Venclexta. IT IS CRITICALLY IMPORTANT FOR ANYONE GOING ON MEDICARE TO UNDERSTAND THAT INFUSIONS ARE COVERED ON PART B AND NOT PART D. IF YOU STAY WITH ORIGINAL MEDICARE AND GET A SUPPLEMENT THAT COVERS MOST IF NOT ALL OF THE PART B EXPENSES, YOU CAN HAVE THE ENTIRE COST OF THESE INFUSIONS COVERED AT NO COST TO YOU. If you instead went with a Medicare Advantage plan, you would be responsible for the Total Maximum Out of Pocket of that plan for these infusions.

As far as Venclexta it is covered under Part D as a prescription drug filled at a Pharmacy. In 2023 you would have about $15,500 of cost for the full twelve month year. Your first month would cost you $3,605 and then each other Month from February through the end of December would cost you $1,085 per month. Those last eleven Months are in what is called the Catestrophic Stage of Part D Rx Coverage, and it is exactly 5% of Retail Cost. Your first Month is a combination of the pre deductible cost, after deductible cost, GAP coverage, and that is all in one Month. Then in month two you enter Catestrophic Coverage for the remainder of the year. The costs I'm referencing are with one specific plan at one specific pharmacy, but in essence it would be the same with almost any Part D Rx Plan with this one drug.

Carl

[Gradyboy in reply to wizzard166]

Thank you! You obviously know the system. That is very helpful advice. So what are people talking about in 2025 the maximum for prescriptions is supposed to be $2000 out of pocket?

[wizzard166 in reply to Gradyboy]

Biden's huge bill that was passed a number of Months ago, had one feature regarding Medicare. It said that we would have a $2,000 maximum out of pocket limit on prescriptions. When I heard this news months ago, I was ecstatic, because the Medicare Part D Rx system is DISGUSTING at its very best, and that is being overly generous to it.

The fact is that the USA never gave it's Senior Citizen population a prescription drug program until the George Bush Administration in 2006, and then Part D started in January 2007. Hard to imagine how backwards the USA is in taking care of us, but it is what it is. So in today's Part D Rx program there is NO OUT OF POCKET MAXIMUM. Unlike younger people with insurance whose Major Medical plans all have a Total Maximum Out of Pocket that includes Hospital, Medical, and Prescriptions, Medicare leaves Seniors open to Bankruptcy.

So it waited until Biden addressed the problem this year, and finally we will have a $2,000 limit on our Rx costs. That is the good news. The bad news is that it will not start until January 2025. That made me sick to my stomach, but again it is what it is. So I'm hoping I do not go on treatment until 2025, and preferably never go on treatment. At least if my CLL will give me a break until January 2025, and if the next administration doesn't eliminate the $2,000 Out Of Pocket Limit on Medicare Rx, then I won't worry about horrendous money loss from the Novel Targeted Theraputic medications.

I'll reiterate here what I said in my first response to your Post. Any infusions are covered on Part B instead of Part D. Part B costs have always had a good limit, if a person stayed on Original Medicare and got a Supplement. So if a Medicare recipient was faced with Chemo, and had Original Medicare and a Supplement such as the Plan F, they wouldn't owe a dime for a full treatment with Chemo. With Medicare Advantage the Total Max Out of Pocket does cover Part B, but some plans have a $10,000 Total Max Out of Pocket for Out of Network. For people like us staying with Original Medicare and a Supplement is of course much more advisable.

Carl

[Gradyboy in reply to wizzard166]

Thank you so much. You have been extremely helpful.

[patagozon in reply to wizzard166]

I started O+V on 09/18/2022. I assume that means my last day of taking Venetoclax is 09/18/2023 (i.e., it's a 12 month O+V protocol, not 12 months of Venetoclax). Anyway, I turn 65 on 09/18/2023 and since I'm retired and on a COBRA policy, I guess I will need to start on Medicare 09/01/2023. I'll hit the max out of pocket expense on my current COBRA policy this month, so I'm wondering how much I'll have to pay for the 18 days of Venetoclax on Medicare? Is there any way to avoid paying out several thousand more?

[Gradyboy in reply to patagozon]

Maybe they could send your refill before the 1st?

[patagozon in reply to Gradyboy]

I thought of timing my refill so it's filled in late August and lasts through 9/18, but I suspect my health insurance company will know I'm starting Medicare. If it was a lower cost prescription, they may not care, but since it would be around $8,000 for those 18 days, they might be keep a close eye on it.

[Flute117]

I had V+O treatment prior to being on Medicare. I have the same concern as you. I was enrolled in the drug manufacturer’s program and only paid $5 per month for Venclexta. I recently received a letter from them stating that I was no longer eligible for the program now that I’m on Medicare. It concerns me to think about my future costs of treatment.

[Gradyboy in reply to Flute117]

I would call the pharmacy supplying the Venclexta and ask if there are other options. There has to be.

[Freedom202]

I know this isn’t any help to you but I feel truly fortunate to live in the UK and have the NHS looking after us regardless of cost. I’ve never had to worry about this and for you to have the financial burden as well as your illness must be very difficult. The NHS isn’t perfect but the care is fabulous and cost is never a consideration when planning treatment for any illness.

[Big_Dee in reply to Freedom202]

Hello Freedom202

The US medical system it is very confusing to say the least. All medical provider systems are cost oriented. NHS has a review board which reviews cost/benefit of new drugs which is part of the reason the UK is years behind on approval for new drugs. That makes sense as government does not want to pay for drugs which are not cost effective, which just reduces the money that could be used for other more needly patients. I doubt that US will transition to complete nationalized health care system because majority of US is used to better medical care than that provided by nationalized system (as in Medicare and Medicaid). All health care systems are subject to abuse by participants. It did not come as a surprise when US Affordable Healthcare Act crashed with 40 million people signing up without the means to pay for insurance.

Health care costs are one of the fastest increasing cost sectors of our countries. Government provided services have escalated to the point where either taxes will need to be raised or a reduction in benefits will be required. Some countries have taxed to the limit of their countries ability to live on the discretionary income left atter taxes, only way left is reduction in benefits.

[Plunket]

I concur

[DanBro1]

Today, if you are on Medicare, your Venclexta copay will be $650 per month (5% of $13,000). Obinutuzumab (Gazyva) is covered 100% because it is administered in a hospital setting. However, by the time you are 65 years old and on Medicare, a new drug out-of-pocket limit of $2000 per year will be in effect beginning in 2025, so the Venclexta copay will be limited. Good luck on your CLL journey.

[Gradyboy]

Thank you! That eases my anxiety. I seem to always be looking for something to worry about lately.

[Analeese]

I am in Tampa, Florida, USA and have plan F original Medicare. Last year I did V and O. At Moffatt Cancer Center there is a Publix pharmacy and they simply ask my permission to get assistance for me. They did all the heavy lifting, and it ended up costing me nothing. When the first grant ran out, they found another one from a different place. I am very grateful.

[Kingfish6]

I'm on Imbruvica with Medicare & Part D. I do get some financial assistance; without it, I'd be out $12K/year via $4K copay then $650 - $700/mo. At your age, by the time you are ready for Medicare, copays should cap @ $2k/year (subject to GOP attempting to repeal it).

[Gradyboy in reply to Kingfish6]

I have decided I need to quit worrying about future problems. It seems all I do anymore is worry about the "what ifs". I don't feel like anyone should have to worry about if you are able to afford life sustaining medicine, yet here we are. Thank you for your help.

[Kingfish6 in reply to Gradyboy]

Agree