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Paying for drugs while on medicare

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Maryellen6
Maryellen6 Member Posts: 3

I am retired, age 75, single and on Medicare part D for drug coverage. The copays for Ckd4/6 like Verzinio and Ibrance are between $5,000- $7500 monthly which no one can afford.

How do people on Medicare part D for drugs get help with paying for these drugs? I am reading conflicting info as relates to people on Medicare. Any info or advice?

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Comments

  • threetree
    threetree Member Posts: 1,382
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    I'd be very interested in what people might have to say about this too.

  • eleanora
    eleanora Member Posts: 299
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    Maryellen

    I don't know your financial status, but there are assistance programs for many of these drugs. You can contact the manufacturer and also speak with your MO.

    I am also on Medicare with Part D coverage, and I know that even without assistance the annual cost of a CDK 4/6 inhibitor is a little over $7000 per year, at least for 2023 and 2024. In 2025 the law promoted by President Biden will cap all Part D payments at $2000/year. That's total, not $2000 per drug.

    Eleanora


  • threetree
    threetree Member Posts: 1,382
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    In addition to my Medicare Part D, I have an AARP supplement. I thought that the supplements were supposed to pick up the co-pay, essentially. Does that only apply to Medicare Parts A and B, and not D? I'm getting confused here. I can't believe that the government would stick cancer patients with this kind of co-pay.

    Do Medicare Advantage plans (Part C), cover these drugs any better?

  • eleanora
    eleanora Member Posts: 299
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    I have a supplement with Aetna. It covers Parts A and B, but not D. Don't know if there are any that do. One thing I want to add to my earlier post - sometimes Part B (and then your supplement) will cover a medication if it is administered in a hospital setting, but not in a doctor's office. Since the Fulvestrant and Xgeva which frequently accompany a prescription for Ibrance/Kisqali/Verzenio are both injections, where you receive them and how that facility bills for them are important. I requested detailed information from the facility where I receive the injections as to how they would bill (including the billing codes) and then confirmed with Medicare that Part B would cover it. The policy of my supplement plan is that if Medicare Part B covers it, they will cover it.

    I do not go to the hospital where my MO is located for my injections, but to a smaller hospital 15 minutes from home.

  • spookiesmom
    spookiesmom Member Posts: 8,178
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    Definitely contact your MO office. I have an Advantage plan. With that, and assistance from MO, I had 0 copay on ibrance. It’s about 14k, per month.

  • threetree
    threetree Member Posts: 1,382
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    Eleanora - More good info, thanks. I'm going to have to start looking into this, as I am just about to start getting some of these stage 4 drugs. Which ones won't be determined until late next month though. Right now my Part D is a "budget" level one, because the only drug I get is Letrozole. There are much more expensive Part D plans I can switch to, that would be better than the co-pays maryellen6 is talking about, but can't switch until open enrollment.

    Any injections or infusions, I would receive at the cancer clinic on the hospital campus where I go for most all my treatments, but whether the cancer clinic bills as a Part B type thing or not, I don't know. They might call it an "office visit". From what you are saying it looks like if a pill is prescribed and you take it at home, you can't get it covered as Part B and that it would fall under Part D. I think some of the stage 4 drugs are given as oral meds these days. Again, I just don't know what they are looking at giving me. Boy, I'm just going to have to start doing some serious calculating and comparisons of Medicare plans. Why do they have to make it so hard for us all?

  • olma61
    olma61 Member Posts: 1,025
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    Cancer drugs administered by your doctor are supposed to be covered by Part B. Pills that are picked up by you at the pharmacy and taken at home fall under Part D. As mentioned above, it is still possible to qualify for a patient assistance program through the drug company when you are on medicare

  • mojos
    mojos Member Posts: 33
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    I am on Ibrance for 3+ years. My co-pays run about $10,000 a year, So far, I have only paid some $700 of that cost.

    It seems that there is great inconsistency in what Medicare part D will cover. Each year it pays about $3,000 of the January co-pay and that is it for the year. Luckily my oncology practice has a person whose full time job is getting money for drugs. I've been covered partially by grants and partially by getting it directly from Pfizer. Good luck! I do have a medicare supplement plan that forks out some $150,000 for my oral chemo.

  • divinemrsm
    divinemrsm Member Posts: 6,092
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    I'm going to say something that some will consider very controversial, and I will only post this one time about it and I will not get into any discussion about it. Take it as my opinion (if you do your homework, you will know the facts). Democrats work hard to try and make Medicare affordable for those of us on it (including me); eleanora's post above mentions legislation they recently passed. It matters who you vote into office. Republicans want to make cuts to or eliminate Medicare. Big companies would love not to have to pay into Medicare and would reap even more huge profits if Republicans got rid of it. Too many people on Medicare do not grasp this. They vote against themselves when they vote Republican. It's not the vague “government" who is responsible for these high costs, it is specifically Republicans who vote for big business and not the common person. You are certainly allowed to think differently, but I'm not here to derail the topic, so I won't discuss it further.

    A couple years ago, I paid about $6,000 for Ibrance and Verzenio and they did not even work. It sucks having to shell out that much money for absolutely nothing in return. The first month when I had to make a payment of $1,200 over the phone for Ibrance, the pharmacist audibly gasped. She felt terrible but I told her I'd explored all options and was stuck paying for it. Plus, by that time, I'd already racked up ten years paying thousands of dollars every year for medical bills related to the mbc diagnosis. Yeah, I am grateful to still be here but sometimes the perseverance it takes to keep moving forward can be exhausting. It just is. Thanks for listening to my frustrations.


  • eleanora
    eleanora Member Posts: 299
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    Divine

    😊👍😘

    Eleanora

  • threetree
    threetree Member Posts: 1,382
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    I remain confused. I did just a very quick an cursory google yesterday about these stage 4 drugs and Medicare coverage, and what I saw said that "most" drugs are covered either via Part B or D, and that even if you get a prescription for a pill to take at home, it will likely be covered, even under Part B, if it is considered chemo. What I read said that Ibrance (which sounds like s super nasty drug with maybe only some benefit), is covered. That says to me that if it's covered under Part B at least, the cost should get picked up by both Medicare and any supplement.

    Again, I didn't look deeply and didn't have the time or energy for it, but there is some info out there that says these drugs are usually covered one way or the other.

    (Divine - my brother is one who consistently votes against his own interest, no matter what I try to explain to him, but he is on the Asperger's side.)

  • candy-678
    candy-678 Member Posts: 4,103
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    I have had Medicare and a Part D prescription drug plan for over a year now-- original Medicare, not Medicare Advantage. Injections given at the office-- my Lupron and Xgeva-- are covered under the Part B portion of Medicare. Any meds you get at the pharmacy and bring home to take-- my Lynparza cancer med (PARP inhibitor targeted therapy), my BP meds, etc are covered under the Part D plan. (I have not had to do IV chemo yet, but I understand that since it is administered in the office it is covered under the Medicare Part B portion.) But..... my Lynparza, for instance, would cost me $3000 a month for my co-pay--- my BP med would cost me $10 for example. No one can afford $3000, I know I can't. So I applied for financial aid thru the manufacturer-- Astra Zenica. It was based on my income. I get my Lynparza from the manufacturer at $0 cost.

  • maggie15
    maggie15 Member Posts: 950
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    Exactly what part B pays for is not straightforward. From the Medicare website part B section on drug payment payment responsibility,

    Oral cancer drugs: Medicare helps pay for some cancer drugs you take by mouth if the same drug is available in injectable form or is a prodrug of the injectable drug. A prodrug is an oral form of a drug that, when ingested, breaks down into the same active ingredient found in the injectable form.

    Here is the link: https://www.cms.gov/outreach-and-education/outreach/partnerships/downloads/11315-p.pdf

    Part D catastrophic coverage for 2023 is reached when your drug copays and what your insurance pays (after going through the donut hole where you pay full price) reaches $7,400. You then pay 5% of the cost.

    I take a pulmonary drug (thanks rads) that costs over $16,000 a month. Luckily I started it before I retired so I could do my research in advance. If I had gone with part D my cheapest yearly cost would have been $2,400 for premiums and in excess of $12,000 drug copay. Fortunately I had the option of a retiree medicare supplement which has an expensive drug premium of $4,800 but $70 maximum copy per prescription even for specialty pharmacy. I wasn't a fan of their medical insurance company with which I was constantly filing appeals but the cost savings kept me with them. Medicare supplement with them has turned out much better since if Medicare approves it they pay without question (so far.) Looking forward to 2025 when the maximum out of pocket copay for part D is $2,000. With you on that one, Divine.

  • going2beatthis
    going2beatthis Member Posts: 140
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    I have traditional Medicare and Part D. The first year I was on Verzenio, I qualified for the LilyCares Foundation and paid $0 for my medication all year. Unfortunately, I did not think I would qualify last year so I made a point to get a Part D plan that would cover it. My monthly premium increased from around $8/month to just over $29/month. My out-of-pocket cost was bout $3200 the first month (satisfied the donut hole in one month) and then between $730 and $760 (5% of the monthly cost which did increase fall of last year)every four weeks after that (approximately $12,000 for the year). Under my drug plan last year, I used one of the Specialty Pharmacies to fill my Verzenio. They would overnight it to me each time. Recommend you check with the different Speciality Pharmacies that are part of your plan. I found the copay amount to be different from one to another.


    IV drugs, as Maggie mentioned, are covered under Part B, not D when administered in a hospital-based clinic.

    By the time I qualified for Medicare, the AARP supplemental plans did not cover drugs. Nor am I aware of any other available plan that does. I have heard from some that are older than I am, that they have a plan that covers their copay forcatastrophic drug costs.

    There are a number of foundations and other programs (over 100) that you can try for assistance. Last year, the social worker at my cancer center provided me with a list. What I found was that most, if not all, have thresholds you need to meet to qualify.

    I used someone to help me determine the best drug plan. This year I will qualify for the Foundation again. But if for some reason I don't, she told me that a new law is in effect and that one can change their Medicaredrug plan at any time. I would be glad to share her contact information if you send me a private message. There is no charge for her services if you do decide to use her


    As for Letrozole, I use GoodRx. They were much less expensive than my Part D plan.

  • sunshine99
    sunshine99 Member Posts: 2,638
    edited March 2023
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    Great discussion. I'm in the process of getting Medicare and have a wonderful woman who is helping me. I've paid nothing, so far, for my Ibrance, but that will all change when I go on Medicare. I do have the option of staying on my DH's insurance. We just need to find out what he's paying now to have me on his plan, and what he'll pay when I turn 65. My head is about to explode! IV chemo is covered under Part B. Oral chemo is "covered" under Part D but you end up paying A LOT of money for it. I'm also going to get Part G, but I'm just so overwhelmed with this right now.

    I'm going to add this to my favorites. Hopefully with the new BCO thing, it will work.

  • maggie15
    maggie15 Member Posts: 950
    edited March 2023
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    sunshine99, If your DH's employer has at least 20 employees and it is cheaper overall to put you on his insurance don't sign up for Medicare part B. With that size company employer health insurance takes precedence over Medicare, while fewer than 20 means Medicare pays first and you have to join. My DH went on my policy when he retired and did not sign up for parts B and D until he was 78 and I retired. If you need help figuring it all out contact your local SHIP (State Health Insurance Assistance Program, www.shiphelp.org). This organization is federally funded, does not sell health insurance, has local offices and phone help, and will help you figure things out even though they can't recommend specific insurance companies. Given the high copays for cancer meds, the monthly copay for parts B, D and Medigap and the yearly deductible, it often makes financial sense to delay Medicare for as long as possible.

  • threetree
    threetree Member Posts: 1,382
    edited March 2023
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    Sunshine - If you decide to go with Medicare, to the best of my knowledge, the person/broker that you are working with, will only describe and offer Advantage Plans to you, not Traditional Medicare enhanced by a supplement. The brokers get commissions on the plans they sell and they often push the plans in their arsenal that pay them the highest commissions. I'm not slamming these brokers at all, as it is their job, and I'm sure that as with the woman you are working with, many of them are very nice people, but do be aware of what it is they do.

    I have traditional Medicare and a supplement, and so far, so good. I am only just starting this stage 4 business and still don't know just what drugs I will be taking, but I've been reading here about the super high copays that some are saying the are stuck with. My current assumption is that with the traditional Medicare and the supplement, I shouldn't have to pay anything unless and until I hit "the donut hole". I don't know what I'll do then if the costs are what I'm hearing on here.

    Also, I signed up for Medicare at 66 when I wanted to get proton radiation covered. I had work insurance but was told that most work insurances won't cover it, but Medicare would. When I went to see about getting the proton radiation, they had me automatically talk to a financial person there at the center and it was real beneficial for me. She told me that in her years of experience, most people preferred traditional Medicare and a supplement over the Advantage plans. She said that since the Advantage plans are private insurance, they are often looking to deny a claim, find a reason to not pay, drop you, etc.; whereas the government's traditional Medicare doesn't do that, as they cover what they cover and the supplement picks up the copay. She also told me that most people would rather pay monthly premiums, e.g. for a supplement, rather than get hit with unexpected and often super high copays. I had told her I was trying to weigh and balance getting the supplement and maybe paying more in a premium than I needed, as opposed to just picking up the copays when they came, but again, she said most people would much rather know that they had a set monthly premium rate, than get surprised by widely varying copay amounts.

    So far I've been fine with traditional Medicare (including Part B), the supplement, and now more recently, Part D. (If you don't get a Part D plan when you first sign up with Medicare, they do hit you with a penalty (lifetime) and you pay more than had you signed up in the first place. Again, it's something to weigh regarding how much you spend on drugs every month, versus the cost of the "penalty".

    Medicare plans are part of a crazy system and far too much for most people to have to sort through in my book - especially people who are older and likely sick. I think they need to find a better way, but given the system they have I did what I did. (All that said, I do know people who have Advantage plans, are happy with them, and have not had any problems with them - but I'd study up if I were you.)

  • cookie54
    cookie54 Member Posts: 701
    edited March 2023
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    Ladies ,Thank you for sharing all this very valuable information! The thought of all this is stressing me out. I am under medicare age but am now on SS Disability so will qualify for MC eventually. I am currently on COBRA and have to transition to something before MC or get a costly COBRA extension.. So I know it's a 2 year wait but the question I have is will it be 2 years from my first payment or 2 yrs from the date they said I was disabled?

    Maggie thanks for the SHIP info I was researching who I can get advice/info from and wanted an unbiased person. When I get closer to qualifying I will contact my local SHIP office.

  • going2beatthis
    going2beatthis Member Posts: 140
    edited March 2023
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    Sunshine,

    If you do decide to stay on your husband's plan, be sure to sign up for Medicare Part A (there is no cost to you for this). I was on my husband's plan until he retired and had to scramble to get onto Medicare Part B and D with no lapse in coverage. When your husband retires, it is important to know that one should not take COBRA since Medicare will no longer consider you being covered by a group policy and will charge you lifetime penalties for both your Part B and Part D premiums.

    As I mentioned in an earlier post, I used someone to help me determine the best Part D plan and she did not charge me anything to do that. If you do go on Medicare, be sure to find a Part D plan that will cover the Ibrance.

    Good luck!

  • vlnrph
    vlnrph Member Posts: 490
    edited March 2023
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    I hope folks realize that, with enough recent work credits, metastatic disease qualifies a person for Social Security Disability payments following a 5 month waiting period (from diagnosis date so some may be eligible for back payments).

    Once on SSDI, Medicare kicks in 2 years later. I retired 'early' at 55 in 2013. Mets were found in 2018, just prior to the time when my employment history would have been, in essence, negated. Rules might have changed since then.

    Applying on line in January 2019, I took a few papers to the local SS office & was approved in 10 days. Deposits to my bank account began in February, at an amount I would’ve gotten if full retirement age. MC started 1/1/21.

  • justagalwholoveslife
    justagalwholoveslife Member Posts: 46
    edited March 2023
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    Hi!

    I’m 50 and on SSDI. I was on original Medicare and was diagnosed 3 days before the deadline to opt into a Medicare advantage plan. I had a lot of research to do before deciding. I chose Humana gold and it has a drug plan. No deductible but $3,200 total out of pocket. I have to pay 20% of chemo drugs but only until I reach my out of pocket. No copays more than $25 per visit. I hope this helps.

    K

  • justagalwholoveslife
    justagalwholoveslife Member Posts: 46
    edited March 2023
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    hi! I’m on ssdi and was put on Medicare at the 2 year from disability date. I hope that helps.

  • justagalwholoveslife
    justagalwholoveslife Member Posts: 46
    edited March 2023
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    I also called a local non profit place that helps with understanding Medicare so that was extremely helpful. They even looked up NCI hospitals in other states for me to see which one takes which insurance just in case I need to go elsewhere for treatment.

  • going2beatthis
    going2beatthis Member Posts: 140
    edited March 2023
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    Traditional Medicare allows one to select their own doctors and does not require a referral. To the best of my knowledge, that is not the case with a Medicare Advantage plan where one HAS to use doctors in the plan. Also, I have not had any issue with getting any of my scans (PET/CT or MRI) covered under traditional Medicare. Whenever one of my doctors (oncologist or otherwise) has ordered a test, it has always been approved immediately. None of my doctors have had to "go to bat" to convince Medicare that it is a necessary test. I have heard from friends enrolled in Advanatage plans that that is not always the case.

  • maggie15
    maggie15 Member Posts: 950
    edited March 2023
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    When you first sign up for Medicare part B (initial enrollment period) you are not subject to underwriting for medigap or Advantage plans. This means you can't be rejected/charged more for having cancer or another expensive health problem. If you want to make a change (from Advantage to traditional Medicare or from one medigap policy to another) you have used up your one-time-only guarantee of no underwriting and your medical issues factor into the availability and cost. This is why it is so important to do your research in advance. I was assured that if the insurance program I enrolled in stopped doing business I would get another "initial" enrollment period. Underwriting does not apply to part D which can be changed yearly.

    Also, drug company assistance programs cannot be used by people on Medicare thanks to the federal Anti-Kickback statute. If people are at poverty level Medicare does have a program called "Extra Help" which subsidizes copays. Unfortunately the majority of people who are just getting by don't qualify for this. There are some charitable foundations that have higher income cutoffs so it is worth asking your doctor's office where you might get some financial assistance if you need it.

    Eligibility and cost vary a great deal depending on your zip code. I live in a small state and I was surprised to see that I was not eligible for policies issued to people who lived less than 30 miles from me. This is why you need to investigate your personal situation and not rely on what has worked for friends and relatives.

  • spookiesmom
    spookiesmom Member Posts: 8,178
    edited March 2023
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    I have an advantage plan from Humana, and have been very happy with it. Yes, you do have to use their drs, mine have been wonderful. They covered all my tests, drugs, LE sleeves the first time around. When I started ibrance my MOs office got me patient assistance. 0 copay, otherwise it would have been 700 a month.

    I was in ER last week for something else, went to PCP for follow up, told him which specialist I wanted, and no home health care. He agreed to all. My point is, hmo are not always the awful plans.

  • piggy99
    piggy99 Member Posts: 183
    edited March 2023
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    Maryellen6, this won't help you right away, but thanks to the recently adopted Inflation Reduction Act (IRA), starting in January 2024, there will be no cost sharing for Part D drugs once you reach catastrophic coverage. For really expensive drugs, that probably means that you have to pay the massive amount once, in January, and then nothing else for the rest of the year. Hopefully a patient foundation would be able to help with the one-time payment.

    Also under the IRA, starting in 2025, the TOTAL yearly out of pocket cost for Part D Medicare drugs will be capped at $2000 (indexed for inflation).

    I hope this information is at least helpful for some of the other posters, who are considering options down the road. It was certainly a wave of relief to know that if I did decide to retire on disability starting next year I wouldn't torpedo my family's finances with my drug costs.

  • threetree
    threetree Member Posts: 1,382
    edited March 2023
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    piggy99 - Thanks very much for posting this. It is definitely helpful information for me, and I am sure for many others here too.

  • AKJ
    AKJ Member Posts: 115
    edited March 2023
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    spookiesmom, I agree. Not all Medicare Advantage plans are bad. I have one through Kaiser Permanente and love it. I do have to stick with doctors in the system but there are lots of them to choose from. I’ve always had great doctors! And no fighting the insurance to cover things. If the doctor refers me, it’s covered. I pay 250 a month for Verzenio. Dr visit copays are 30. All scans are covered completely. I’ve had Kaiser for probably 30 years and was happy that they have an awesome Medicare plan. Gym membership included

  • sunshine99
    sunshine99 Member Posts: 2,638
    edited March 2023
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    Good morning, all.

    Thank you for all the input on Medicare and Ibrance. I never qualified for Disability since I retired a long time ago. I am just starting to get my Social Security income. Decided not to wait, since I may not make it until 70.

    I am choosing traditional Medicare and will just get Part A for now while I stay on my husband's insurance. Another benefit of his insurance is that we have Dental and Vision coverage. We have a high deductible, which we've almost met already, thanks to my multiple scans.

    All the information about "catastrophic" and "donuts" and "donut holes" is making my head spin, but overall, I'm feeling a lot less stressed over it.

    I hope everyone has a great weekend.