Newly diagnosed. I've always been extremely healthy and never had to take medications, so when I went on Medicare, I opted for a weak/less expensive Part D. (I am on the standard Medicare.) I realize now that I have to change that. Even though I'm on W&W, I don't know how long that will last. Fortunately, in my state this year, I have to the end of December to do that. I'm new to all of this, so my questions are likely going to be pretty random. Our insurance person told us that I needed to submit the possible drugs that I may need and then select the plan that provides the best coverage for those drugs. I'd appreciate help with creating this list. Also, what has your experience been with insurance covering the medication you need?
Medicare Part D question: Newly diagnosed. I've... - CLL Support
Medicare Part D question
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Living_and_Learning
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24 Replies
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lankisterguyVolunteer
Hi GranolaLover123543,
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The simplest way to choose is to go to: medicare.gov/plan-compare/#...
Then sign in and look for Part D plans
medicare.gov/plan-compare/#...
Enter the drugs you are currently taking and then add Calquence / acalabrutinib 60 tablets per month and/ OR Venclexta 120 tablets per month to see what the copay will be.
The results will list the lowest total annual cost including the monthly premium and all copay amount, to show you what would be the best choice for 2024.
medicare.gov/drug-coverage-...
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There are previous discussions you can find in the box on this page labeled:
Related Posts
*Medicare Part D questions
*Going on Medicare part D
*Advice on Medicare Part D Plans
*Medicare Part D and Ibrutinib/Venetoclax
*Multiple cancer drugs on medicare part d
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Len
Thank you, Len. I checked the previous posts before I posted, but the ones I saw were from 3-4 years ago, so I thought that things might have changed. Thanks for the info on what drugs to enter to make this determination. That's what I think I need.
Many of the drug companies in the US offer free meds, and occasionally there are drug trials paying for the meds. The drug companies are not very stringent, they look at income not total assets. So you can ask a few, then just take out less money from retirement funds if you think you may go over their cap. Especially if a big ticket item like a car or major house repair is upcoming, it may be wiser to finance so you aren't pulling the cash from an IRA such that you go over a cap. For Venclexta, I believe it's mmm $75K; more as number in houshold goes up.
Since we don't have a large number of oral meds available, running them against various plans should not be too difficult.
My understanding is that within the next few years, the out of pocket max is going to be lowered and the "donut hole" is changing.
aarp.org/health/medicare-in...
aarp.org/politics-society/a...
My drugs recently (venetoclax) have been paid for by the company, and pre-Medicare I got a grant from PAN that covered my copay for that med (ibrutinib). One treatment was all injectable in-clinic so copays did not get put into the equation. Others were trial medications covered by the trial.
Will you share more info about the PAN grant? My specialist is discussing V+O for my next tx (both made by Genentech). Several people have shared that Genentech offers grants to patients making less than $150K a year, but the website says it's only for privately insured people, not Medicare users. venclexta.com/previously-tr...
I'll qualify for Medicare next October, but will end up paying more for insurance because Medicare includes all my IRAs as liquid assets. (They count money in a checking, savings, or retirement account, stocks & bonds) medicare.gov/basics/costs/h...
My best plan, under the circumstance, is to not need treatment until 2025, when the $2k out-of-pocket pmt cap becomes law. 🙃
Here's the link to their foundation. The pharmacist at the specialty pharmacy attached to my oncologists' practice when I started on ibrutinib started the application. I gave some info by phone, I don't recall having to supply any financial documents up front. I did have an application to fill out, they paid the first copay while waiting for the application.
The Leukemia and Lymphoma Society also has financial support, I *think* there are travel funds if you need to travel for a specialist, or a study. Not sure because I have never asked for them, just, I seem to recall a phone conversation. After my diagnosis, I called everyone!
I know for sure the American Cancer Society offers some travel & hotel assistance, I think even if it's just transportation within your city for infusions you should not drive yourself home from: cancer.org
Even if the Cancer Society doesn't have transportation for clinic visits, many cities/counties offer free or reduced rate transportation for medical needs/elderly. My next door neighbor in the city gets transportation there & back 3 times a week to his dialysis.
Dr. Kaufmann's CLL Society offers a wealth of "self education" topics, in addition to a network of physicians willing to do a one-time free telephone/Zoom consult (there are some restrictions) as well as, IMO these support groups will know who in your region is recommended, how they run their practice, etc. etc.
Most all the CLL Society Support groups meet on Zoom, and my laptop doesn't even have a functional camera so you don't need anything really high-tech to join a meeting. Although it was very odd me seeing others, and they could not see me. It made joining the conversation difficult for me, I felt like I was "interrupting", no one could see my face for any cues I wanted to speak! There have been intermittent "in person" meetings too. I think every state/region is different, so my experience may not be the same as others.
Also, some health care centers/systems have in house, local, county, or state assistance for cancer patients. I've seen patient group meetings, care giver meetings, financial assistance meetings. There should be a Financial Advisor of some sort at your doctors practice, unless they are very small.
As always, you Wise Goddess, thank you for taking time to explain stuff. 😍
Medicare/Part D beneficiaries will see a break in 2024 , too. The 5% copay goes away as of dec.31, 2023. So after paying a huge amount in January, no copay thereafter. LLS estimates total out of pocket costs for our expensive drugs next year will be around $3,500 or so. Then the 2025 cap will limit your cost to $2k, as you've noted.
Note that the medicare calculation for insurance each year is based on your tax return the prior year. Therefore, it only takes into consideration your earned and unearned income. If those combined exceed a certain level, then you'll be hit with IRMAA, essentially a premium surtax. And the amount of IRMAA depends on how much income above a certain level.
And depending on your income and assets, the medicare extra help program you linked to may or may not help. However, don't despair.
Various financial support programs --LLS and PAN foundation are two great examples--will help based on income, not assets. Note that those programs used to provide around $8k/year at the max and tended to run out of money by the end of the year. Beginning next year we'll need less help thanks to the Part D caps i just mentioned, so maybe those foundations will not have empty wallets by mid year.
Thanks for the info Larry. I just found this further explanation, which tracks closely with what you've shared.
"The out-of-pocket spending threshold is increasing from $7,400 to $8,000 (equivalent to $12,447 in total drug spending in 2024, up from $11,206 in 2023). This amount includes what beneficiaries themselves pay out of pocket plus the value of the manufacturer discount on the price of brand-name drugs in the coverage gap phase. Based on the $8,000 catastrophic threshold for 2024, enrollees themselves will pay about $3,300 out of pocket before reaching the catastrophic phase (this estimate is based on using brand drugs only)." kff.org/medicare/facoundt-s...
I'm finding the info a rather convoluted, and there's a lot of stuff I really don't get—like how $8k cap drops to $3,500ish thru the miracle of something called a "gap" or "donut hole" in the "catastrophic phase." I am willing my brain to understand this, but why say $8k if the number is $3,300 to $3,500? I'm testing out the link lankisterguy shared: medicare.gov/plan-compare/#... and am still trying to wrap my head around everything. I have read thru and bookmarked a couple dozen weblinks, but still feel as dumb as a rock. Is there a Medicare for Dummies book?
I'll also check with my CLL specialist's office to see if they can direct me to supplemental insurance plans, if I fail to find assistance from an organization.
Anywho, thank you for responding. Wishing you a very Merry Christmas 🎄
Neurod..., don't feel lost about medicare. It is among the most complex subjects retirees will ever face. Really unfair to subject us to this. Note that each state has a non profit organization called SHIP. shiphelp.org/
Usually located at senior centers.
In this case the $8k reference is really irrelevant for us as beneficiaries (i.e., recipients) of insurance coverage. It's all about the out of pocket copays, as you've realized. And donut hole and catastrophic coverage and the other jargon also will become irrelevant as the $2k cap kicks in in 2025. hang in there.
medicare.gov has an excellent web site to help you find the medigap/supplemental insurance carrier that provides the best coverage for your situation. The SHIP counselor can help you with this, too.
Another idea is to contact lls.org and call one of their advisors for a general explanation. LLS.org has a lot of useful resources about medicare.
Larry, Thank you again for all your help. I've been on a learning curve and wanted to follow up and share this one internet trick I learned. 😄
It took me a while to figure out the obvious, but I finally realized all I had to do (within the Medicare website's Part D drug plan search medicare.gov/plan-compare ) was to enter a cancer drug like Venetoclax and then click the blue button (within each search result) that says "Plan Details." It shows how much I'd pay each month. Once I added "Venclexta" it showed that I'd reach the miracle donut hole thingy the very first month.* It included a total cap on all my RXs combined. A picture really IS worth a 1,000 words.
I have a college degree and worked as a web developer, but still missed this because I only entered my current low-cost RXs (which never reached the donut hole gap thingy). When I finally added Venclexta to the search box, I saw the obvious out-of-pocket number (about $3,300, just like you said). Yeah, I AM embarrassed. So I'm sharing my embarrassing revelation in case anyone else can benefit from a pictograph.
* The attached is missing the month of January because I ran the search partway into January, so it defaults to Feb as the first month of the plan.
US Medicare "donut hole" pictograph. Doh!
glad to see you got some info, not to mention the great news about the cost cap. don't feel bad about dealing with the complexities of medicare and the web site. i have some wicked smart friends who complained to me that this is the most complicated project of their lives. and they used to trade commodities.
If I ever move into a cave, I'm going to etch the (above) pictograph onto the walls for future archeologists to find.
Since CLL is generally treated based on trends or symptoms, not one blood test, you may begin to get a sense that treatment is coming and be able to research and change drug plans if needed. That is the path we have taken with regards to Medicare D.
It is very good that you have chosen traditional Medicare accompanied by a good supplemental plan and a good part D plan.
Do not EVER fall for the pitch to switch to a Medicare Advantage plan offering all the free stuff like dental and travel to your appointments, etc. This is not Federal Medicare at all but a commercial insurance company product licensed to “pose” as medicare. Medicare Advantage will throw roadblocks in your path every step of your way through treatment.
I would like to respond to the comments about Medicare advantage plans. I was totally healthy when I turned 65, and was advised to choose Anthems medicare plan. Since then I have been diagnosed with GPA ( affecting primarily my ears, but required 6 months of doctors and testing to diagnose). I was on at least 10 different antibiotics, had about 6 CT scans. In May of this year I was diagnosed with breast cancer, so now have had several surgeries, chemo, and radiation. The ONLY thing my Anthem plan denied was a wig!!! And I think that was because it was coded incorrectly. I have support from an insurance nurse navigator in addition to the perks you mentioned of gym membership, OTC allowance, hearing and vision and dental coverage. I pay little or nothing for prescriptions. I have been very pleased with this plan. I’m sure there are some others who have horror stories but I have really had an overall positive experience.
Thanks for sharing a more positive view.
Was your Anthem plan an independent plan that you purchased or part of a retirement plan for a group such as teachers, State employees etc.?
My plan is independent - I used a group called RetireMed to help choose. They asked for a list of my doctors/medications and then made recommendations. That was 4 years ago and as I said I have been pleased. Good luck!
Thanks. I’m very glad that your Advantage plan is working well for you.
The reason I wondered was that my husband, in great health, had an option a couple of years ago , to switch from a Medicgap plan to a United Healthcare plan within the State Teachers Retirement system. It was a very attractive plan with a $100 per month savings. The network included basically any provider in the country who accepted Medicare and the important thing was that there was an option each year to switch back to the Medigap program with no underwriting or change in rate. Also referrals for specialized care were no needed. He is very happy with the plan , but of course being a very healthy person, has not complicated medical needs. However, because of the reputation that Advantage programs have, I don’t think that I would have suggested that he make the switch without the ability to be able to go back to the Medigap insurance.
I have found , in this group, that the members who are happy with their Advantage plan are usually people like my husband, who are on it as part of a large retirement group and the plan does not have the restrictions that most Advantage programs do. You are the exception.
Not true, I have a Medicare Advantage plan and am pleased with it. It's through Humana which is a real insurance company. I'll mention I chose a PPO plan not an HMO one. IMO the HMO plan models overall are more restrictive, it's more a function of the *insurance* not whether or not it happens to be Medicare Advantage. My plan has a huge network, but some plans may have very small ones. Another Medicare Advantage plan offered in my region gives $$ back, and has zero copays, but is more restricted as to "in network" providers and covers fewer things. So a tiny local insurance carrier may offer a Medicare Advantage plan with not a lot of coverage, as well as large carriers like the Blues, United Healthcare, and Humana.
It's all in the fine print. It's not the fact of Medicare Advantage, or not.
Thank you!
The nice thing about Part D is that you can change it every year. I did this every year for the first few until I settled on something that works for me. I am not yet on treatment, so will again look at options when I reach that time. Good luck!
I have a Part D plan. As was pointed out, there are foundations as well as programs from the drug companies that will fund the really expensive drugs, like BTK inhibitors. Your doctor's office, or the pharmacy associated with the hospital your doctor works in, should handle the application process.
Regarding the various plans available in my zip code, I found relatively little difference in what the cheaper vs more expensive plans will pay for these Tier 5 drugs. It's not great. If you go to Medicare.gov, you do not have to sign in to find plans and determine costs based on drugs you take or might take. You just cannot sign up without signing in. Also, keep in mind, that there is an out-of-pocket cap in 2024, and that cap goes down to $2000 per year for all medications under any Part D plan. I will pass that in January of 2025 on Calquence (acalabrutinub).
This is helpful to know. Thanks!
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