Does CLL treatment in the U.S. break the bank? - CLL Support

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Does CLL treatment in the U.S. break the bank?

Myfavoritecat profile image
Myfavoritecat

I am a 75 year old woman who has been at stage zero CLL since diagnosed 3 years ago. I’ve been reading about all the treatments that members of this group are getting that aren’t chemotherapy. Are those of you in treatment finding that you are using up your savings to pay for treatment, or is insurance covering most of it. I have Medicare and supplemental insurance with Anthem.

31 Replies

Hi Cat,

Well, I’m younger than you (53), insured by my employer, as I work full time, so our situations differ a bit, but ... I was on the Venetoclax & Obinutuzumab treatment (for 13 months), & it was cheap: 5$ a month for the Venetoclax, as opposed to 60$ a month, because the drug company covered my co-pays. But they don’t do that for folks on Medicare etc.

In the end, my weekly then twice-monthly labs (40$ a pop) cost far more than the treatment itself.

I know others here will have information more relevant to your situation, though, and I hope it’s as positive as my information.

—Dave!

SofiaDeo profile image
SofiaDeo in reply to DRM18

If you income qualify, even folks on Medicare can get copay and other assistance, I do. Genentech Foundation pays for my Venclexta, and when I needed to run an emergency supply through my insurance, I got the $2900 copay granted. I am somewhat fortunate in that I make about the maximum allowed before disqualifying for copay & drug assistance!

make sure you get Medicare Part D - for drugs.

Shepherd777 profile image
Shepherd777 in reply to whmk

Medicare Part D insurance like Express Scripts will tell you they cover Venetoclax on their formulary. Make sure the Medicare Part D you choose does so. It seemed to make a big difference when applying for a Pharmaceutical discount which Medicare Part D we had.

whmk profile image
whmk in reply to Shepherd777

Yes, you are quite right that not all Medicare Part D coverage is the same - very stupid and complicated. My AARP-United Healthcare covers Ibrutinib and Acalabrutinib but not Venetoclax. I suppose every year in November one can change Part D coverage to match one's needs.

SofiaDeo profile image
SofiaDeo in reply to whmk

Be very careful there isn't a pre-existing disease clause, and that you are getting a Medicare plan and not an individual one. Some states have repealed the Obamacare requirement to cover preexisting conditions & their medications. They are grandfathered individual insurance plans exempt from the requirement. hhs.gov/answers/affordable-...

Medicare plans can change their formularies, too, as well as physician coverage in the same year! I had a problem last year, where a doc I saw in March wasn't covered in December, but was covered again the following January.

I verify coverage before every visit now. I have an online check in system I can do starting 24 hours before, it alerts me to insurance coverage. That's how I avoided that out-of-network visit from last December, a notice popped up during online check in that the visit was not covered. Whooo did I avoid a major expense! That visit was scheduled for a boatload of tests due to the Richter's/ALL abnormality followup from the previous labs.

whmk profile image
whmk in reply to SofiaDeo

Medicare Part D just needs you to prove continuous drug plan coverage and I think you can switch carriers every November.

Wow, excellent information. Thank you!

lankisterguy profile image
lankisterguyVolunteer

With your Medicare parts A & B plus a good supplemental plan ( type F or G) you should be OK for all the expenses for medical treatments administered by health care professionals ( in patient and out patient care).

But just in case, since you are on Medicare, you may want to contact your state SHIP to tune up your coverage if needed. The one thing that is not well covered by Medicare are drugs you take without a medical professional present (e.g. pills taken at home). These are under Part D plans. -

medicare.gov/talk-to-someon...

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acl.gov/programs/connecting...

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Then next contact the LLS.org for guidance on getting copay assistance for your Medicare Part D prescription policy.

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Many CLL Expert doctor's staff can guide you through the process with help from the specialty pharmacies that distribute the very expensive pill medications

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Len

Thank you so much!

Well, I hope you stay in watch and wait. I’m 72 and only have Medicare and a supplement. I am believing the CLL Society or some similar foundation will help with the costs if treatment is ever needed. I had great assistance from a foundation 5 years ago to cover my 2 months $60,000 Rx for Harvoni for hepatitis C. I can’t worry about it now while I, too, am in W&W. I live each day to stay healthy and I am progressing at keeping stress at a minimum. God bless you. Sandra

😊

Thanks so much for your thoughtful words. Best of luck to you!

I checked and Medicare plus my Medicare supplement plans will cover the costs of V + O completely.

I am 73 and on Imbruvica 420 1x daily. I have Medicare, a Blue Cross supplement, and Part D coverage with Aetna Silver Script. The drug costs $425 per pill...no kidding. Who in the world can afford this? I have been fortunate that the cancer center I go to has social workers who look for funding. The first 6 months I paid nothing as they got grant funding. Just last week I was told I had to pay $344 for the next 28 day supply and the next time I renew it will be over $700. The social worker will apply for payment through the pharmaceutical co. but I have to spend 4% of my income first. If funding runs out at some point, I will definitely not be able to afford the drug. Have been on it since late last December and it has brought my WBC count down from 246k to 64K...so it's working. I can only be grateful for the assistance I have received so far. I don't know how those with no insurance or very little income pay for these drugs and treatments.

Insurance companies have destroyed the US healthcare system. However, the citizens of the United States consistently vote to keep it this way and not have some communist or socialist healthcare delivery arrangement. That being said, most folks in the United States hold their breath and hope they make it to age 65 when they can sign up for Medicare and retire. Big Pharma owns the US Congress. For example, Medicare is not allowed to take price bids on our drugs. Congressman Billy Tauzin, who chaired the Commerce Committee over seeing Medicare, slipped in a last minute provision forcing Medicare to pay full price for all drugs. In return, when he retired, he was hired as the pharmaceutical industry's Washington lobbyist at a salary of $2 million dollars per year. Yes, unbelievable, but true. I am 74 and retired. I have Medicare plus a supplement. My Gazyva IV infusion treatments are covered at 100% because they are done at the hospital (at a cost of about $14,000 a pop). Under Medicare Part D, my 4 daily Venclexta pills cost me a co-pay of $1000 per month until I am out of the donut hole when I will pay 5% of the cost. Come next March 2022, I will be done with this treatment for a few years, hopefully.

That Donut hole gets us every time!

In the USA Medicare-Advantage plus insurances like UNITED pay all RX after the initial catastrophic total of about $ 5,000 per year, or less on some plans. The cancer centers have social departments that can arrange some financial assistance from foundations which pay all CLL related RX, therapies und treatments. Thus, research a Medicare-Advantage Plus plan, then ask the financial department of your cancer clinic for help and assistance. As long as you are Medicare-eligible do not worry, Similarly this may also be for those on Medicaid. I am on IMBRUVICA for CLL and United Medicare Plus pays all RX after annual expense of $ 5,000 and my cancer center arranged that a foundation pays the annual $ 5000 which I would have to pay for the $ 165,000 annual cost of IMBRUVICA. Thus the CLL costs me only $ 20 for the monthly visit to the Cancer lab and short talk with the hematologist. Since they check the CBC and CMP each time, I also save the time to got to the lab of my primary physician. Thus: Watch you diet, exercise, and do not worry about the money ! INFORM YOURSELF! Check whether it would be better to get out of the arrangements you have now, and in November switch into a Medicare Advantage Plan which costs you no monthly fee and provides full coverage, in stead of the two separate - Medicare and the supplement plan. I even get over a couple hundred dollars worth of wipes, gloves, vitamins and devices shipped to me each year. Medicare Administration send us all a booklet in the Autumn which lists the Medicare Advantage Plans in each state, with details about their coverage.

Myfavoritecat profile image
Myfavoritecat in reply to janvog

Thanks for taking the time to share this.

I have a Humana Medicare Advantage PPO that allows me to be seen at out of state specialty centers. Try to avoid an HMO type if you can, this allows you to go to CLL specialists elsewhere if necessary without going out of network, unless you are in a large urban/university area where these places would be in-network.

My FIL, who has a rare disease, has the AARP United Healthcare plan. I can't say I have been impressed, I think mine is better IN OUR STATE. Every state is different, and from what others have posted here, the AARP plan is great in their area.

DanBro1 profile image
DanBro1 in reply to janvog

I avoided the Medicare Advantage plan because their co-pays are outrageous and if you travel at all you may not find a doctor in your network. Additionally, in your hometown, you are told which doctors and hospitals you can go to, or you are hit with out-of-network fees which can run up to a maximum out-of-pocket of $11,000 for 2021. Additionally, insurance company Medicare Advantage plans are paid by the Federal government a flat "capitalization rate" of roughly $9000 per year for each person they sign up. Consequently, they send you to the cheapest doctors, the cheapest hospitals, the cheapest drugs, the cheapest knee and hip implants, etc. in order to maximize their profits. The less money they spend on you, the more profit they make. Additionally, I do not like having to call an insurance company and request "pre-authorization" to see any doctor or specialist. They are not my mommy! With my original Medicare with Supplement I can go to any primary care doctor or any specialist doctor without getting mommy's approval.... as long as they are an authorized Medicare provider. I have Medicare Plan G, which means I have no co-pays and a yearly deductible of $203. The disadvantage is I pay $300/year for a prescription plan with a $413 deductible on drugs on tiers 3-5.... plus a co-pay. For years, this has been sufficient, no problem. Until you need a tier 5 drug (i.e. Venclexta) This puts me in the donut hole and at risk for additional co-pays on drugs at inflated US prices.

PacificCLL profile image
PacificCLL in reply to DanBro1

The plans available in each State are different. Be sure to check if an AARP United Health Care Medicare plan is available. My benefits are not dependent upon income level.

As long as you have original medicare plus a supplement plan plus a part D plan, you should anticipate a copay of some 11 to 12K a year for ibrutinib. If your income is below a certain relatively high amount there are foundations that will cover the copay. Some medicare advantage plans may not cover certain drugs. Some part D plans may also not cover certain drugs.I have original medicare plus an AARP United plan F plus a United part D plan. My income is too high for help. I pay about 11K a year copay for ibrutinib per year.

David

Dave,Are the Part D and supplement plans expensive?

Jeff

I pay $415 a month for my plan F from AARP United. Plans A and B and I think C are a bit cheaper. By law all plans across all carriers must be identical. So a plan C from United must cover the same as a plan C from Humana or any other company. The only difference is premium and the kind of service you get. Some companies may try to refuse payment in some cases. I like the service I get. Apart from the 415 monthly premium and the Medicare Part B premium deducted from my social security checks I have paid zero for hospitals doctors tests and my monthly IVIG.

That leaves drugs. I now pay about $50 a month for Part D insurance. Also United. United has a cheaper plan but it does not cover Eliquis which I used to take and may have to again. You need to be careful that all your meds are in the formulary of the plan you choose. Unlike the Supplements which by law must bt the same (all Fs cover the same costs as do all As Bs etc.) drug plans set their own formularies. They also have copays. People like us quickly get to where 95% of the cost is covered.

Medicare has an annual book that explains all this and more.

Good luck. Our American system is unnecessarily complex because it is a combination of public and private, in my opinion. But perhaps there are some advantages to this.

David

Thanks Dave! I’m getting close to switching from my employer retiree insurance to Medicare and wanted to know what was out there.

BTW, I just left Delray on Friday. I was there for my son’s graduation and to visit with my mom.

Jeff

I also am taking the targeted drug therapy. I have medicare and mutual of Omaha as my secondary. I started on Imbruvica for 3 months and then gradually introduced Venclexta. These are the brand names. And, yes, they cost A LOT of money. But my part D which covers medications pays over $1200 /drug each month. I told the specialty pharmacy at Vanderbilt that I found that hard to believe but he insisted that my insurance was indeed paying that much! My part D is through Express Scripts. My monthly on those 2 meds alone was over $1200. That's $14,400 annually and then every January, I have to pay the full deductible which ran about $6000 (includes other meds).I ultimately had to switch from Imbruvica to Acalabrutinib (Calquence) because of terrible skin conditions. That drug alone costs me $821/month but no side effects.

On the upside, my lab reports look like I am a completely healthy youngster of 73!

Yes it is extremely costly but we are getting a tidy refund from the IRS because these meds were over 7.5% of our adjusted gross income. But the results are worth it.

I do not know what your cost will be. Check with your partD as well as the pharmacy that will provide them.

I hope this helps. My oncologist did tell me if I couldn't afford the costs, the drug companies will work with you to decide what it will cost including free if necessary. They are not in business to deny you the care that you need.

Pat

Most helpful input, and quite sobering. Thank you!

Actually, your pharmacist is right. Venclexta costs about $14,000 per MONTH' supply. I discovered that Canada's healthcare system pays about $9,000 per month's supply for the drug. Don't know what the Brits pay, but probably less than $6,000 per month because they have twice the population. "The drug, which only gained marketing authorisation in October, blocks the anti-apoptotic Bcl-2 protein, leading to the death of diseased cells. The listed cost of a course is £4,789, but the NHS has been offered an undisclosed discount by the manufacturer Abbvie." Per British Society of Hemotology. As usual, US taxpayers subsidize the rest of the civilized world's medical costs.

I have medicare, a supplement for medical expenses and a part d drug plan. Between medicare and the supplement, I only pay the deductible, $203 for 2021. No additional out-of-pocket costs. However there is a monthly premium for both medicare and the supplement, which for me comes to about $250/month.As to prescriptions, when my oncologist started me on Venetoclax, the specialty pharmacy that is part of the same medical group called me and said they were able to get me a grant that covers 100% of my costs that the insurance company doesn't pay. They got this through the PAN (Patient Assistance Network) foundation.

So my thought is that treatments for cancer do not have to be financially devastating. There are many many people and organizations in the U. S. that do a wonderful, caring service to those of us with cancer. I would start with your doctor, and also, as mentioned above, LLS and The Cancer Society.

Thank you! Your reply is encouraging!

I am on Medicare with a supplement from United Healthcare and prescriptions from Humana. My doctor applied for a grant for me from the leukemia society. They paid everything, I didn’t even have a co-pay! The medicine (Imbruvica) costs $9-$12 THOUSAND dollars a month.

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