I’m 76 years old and was recently diagnosed with SLL. My doctor put me on Calquence. I take only 1 a day because 2 was giving me headaches. So far I’m doing really well on this. She put me on this because she said it has the fewest side affects. My problem is the cost. I can’t afford to pay the a co-pay of $2,000+ a month. Anyone else experiencing this. Seems my only alternative is to change medication to something else or a different insurance company. However, according to the pharmacy, other companies aren’t much better. I’m of course on Medicare and have an advantage plan with an insurance company which has worked well until now. My doctor is going on maternity leave so will be seeing someone new on my next appointment in two weeks. I guess I’m looking for something that will work as well with little to no side affects at an affordable cost. I’m hoping someone here can help me with this.
calquence: I’m 76 years old and was recently... - CLL Support
calquence
Howdy,I am on origional medicare with a plan G supplement. I also have a the cheapest part D.
Last year I got a grant from Pan to pay my $10, 000 copay for Venetoclax. This year the max out of pocket for plan D is $3400. Got a grant for that one too. Next year in 2025 max part D copay for the year will be $2000.
So, I don't quite understand why you are paying $2000 per month copay????
So after the first bottle of Venetoclax this year. My max out of pocket copay was paid by the $3400 PAN grant. Since late January I have not paid one dime for any prescription.
Thank you for your answer. This is all new to me. I had no idea this medication was so expensive. I will definitely look into Medicare plan G supplement. I have never heard of it until now. I would then have to drop my advantage plan. How do I apply for Pan, something else I’ve never heard of. Looks like your med is just as costly as mine. I think charging that much is criminal.
Patient Access Network (PAN)
Look for patient financial assistance/co-pay assistance drop down screens
also try LLS (Leukemia & Lymphoma Society Co-pay assistance program)
lls.org/support-resources/f...
Another option is to contact AstraZeneca directly. They have a program to provide Calquence to patients at very low cost.
Thank you, I will do that.
Thank you for this information.
I have a Medicare Advantage plan, and qualify for free drug from manufacturers. My experience has been, they look at income not total assets, it isn't like Medicaid or other government aid programs. You can withdraw low amounts from any retirement funds to stay under any "income maximum" for free drug assistance. I think it was $75K a year, double if married, for my Venclexta. Please check out free drug options first. If you are planning to withdraw a large amount that would be taxed to buy something like a new car, maybe have to wait, or finance it instead of paying cash. If you already have liquid funds in savings, I don't remember anyone looking at that. If I remember correctly, all they wanted was taxable income per year.
Larger practice groups often have billing specialists who know about the various support programs for their patients. If your doc doesn't have someone like this, that may be why no one there offered to get funding for you. The drug companies have a link for patients, they have someone who calls or emails back & will obtain whatever needed from the doctor, and tell you what documents they want for their income assessment.
Good Information! I am on Calquence and get it for free from Asta Zeneca. I had help with a financial navigator to find the patient help I needed. I started with a grant but used up the grant within 3 months. As Skyshark mentioned, go onto the Astra Zeneca site and look at the qualifications. You will have to have your providers help with the paperwork and submit the prescription. Hope this helps! Good luck with this!
Thank you. I really appreciate all the help I have received here. All of this is so new to me. I’ve been on Calquence for only one month. I was diagnosed in January of this year. Things have moved so fast that my mind was everywhere but the cost of this. I wonder how soon a generic will hit the market. Calquence was introduced in October 2017 so their patent should be up then if what I heard that 7 years was the magic number for that. Fingers crossed.
Nothing in life comes for free. Some come with headaches - big ones🙄🤫🙆♀️
Unfortunately you are right. The big ones I had caused me to pass out. I had double vision and a rash as well while on allopurinol. My doctor said it was only a preventative measure against gout for the first three months of treatment. So far all is good. I was expecting headaches just not the kind that would last for days with no relief. All is good now.
Phew, that must have been hard. Had forgotten about my allopurinol headaches until you mentioned. Take care
Thank you, I will. You too ❤️
Thank you for your reply. My income is higher than that so not sure I would qualify and I don’t know if I can withdraw money from my retirement account but this is worth looking into.
Some of the drug companies do a "sliding scale" based on income, so you can ask about that. IDK if the Calquence people do, or what their income max is.
If you do change plans, just double check everything carefully. Depending on the wording of the contract, certain types of plans can exclude pre existing conditions. A plan that is considered "short term" may still exclude pre existing conditions. My understanding is that if you get a plan through your state's government sponsored insurance website, that should be safe. But always double check. Medigap type plans can exclude for 6 months I think.
verywellhealth.com/pre-exis...
Thank you. So far I have applied for one financial assistance program and was denied because of income. I’ll keep trying other places though.
I know that when you turn 73 you have to follow the RMD and take out around 4% a year if your retirement assets are tax deductible. Unsure if this fits your situation. If you are still working it may be a good time to decrease your hours. I had to do that to stay under the income cap. Hope you find a way to work this out! All. my best!
I retired in 2010.
I hope it was your choice! Ill be 71 this year. I may retire at age 73 when I have to start my RMD. Of course my clients won’t be happy!🥺Hope your able to find some good resources for the medication. Take care!😊
It most definitely was my choice. After 31 years working as a secretary at a high school I was more than ready. My husband was a teacher at the same school and we retired at the same time. Sadly, he could only enjoy a few years before he passed away.
I am sorry to hear about your husband passing after retirement. My sister worked in a school and she wasn't sure if she would make it until she could retire. She went through Covid with the students at the school and had to adjust to classes through Zoom. She is now retired. Please take care and I wish you well in trying to get the financial resources you need.
Thank you so much for your kind words.
I too am on traditional Medicare (Plan N) with a cheap Part D plan. For 2024 the max out of pocket for drugs is $8K, and $2k next year as pointed out. However, the hospital should be able to get you a grant and reduced price or possibly free drugs from Astra-Zeneca. They did for me.
I'm in the process of trying to learn about Medicare (I'll qualify next year), but it's very confusing. Understanding the co-pay on these expensive cancer drugs is very difficult. I finally went to the medicare.gov site and searched for Part D plans. I entered one of the drugs (in this case Venetoclax) and realized it cost a fortune for the first month, but was free after that. Click to expand this image to see what I mean. I suspect you're nearly at the max out-of-pocket prescription cost for the year already (depending on your individual Medicare plan and pharmacy). And as Pacificview said, next year the max will be $2,000. Hopefully you'll get a grant, but if not, you may not need to pay much more than you already have.
Medicare couldn’t be more confusing. I’ll check into the Part D plans. Not sure what next month will cost. I can’t get an answer from my plan as to what my out of pocket yearly maximum is. I’m going to keep pushing for an answer.
I'd demand an immediate answer, because it looks like you have until March 31st to change plans if you're not happy with the one you're on. I just went to medicare.gov/ and see an alert that says: "In a Medicare Advantage Plan? You can still make a change! From Jan 1 – March 31, if you’re in a Medicare Advantage Plan, you can switch plans or return to Original Medicare and join a separate Medicare drug plan."
If you want to compare drug plans, go to medicare.gov/plan-compare/#... and type in your zip code and then press continue. From there it lets you select what to search for (I searched for Medicare drug plan (Part D).
Thank you. I do have someone working on that for me right now. I’m going to also give Medicare a call today today to find out how much it would cost me for a separate drug plan and what it would cover. I don’t know what other things they cover. I don’t think they pay for vision and dental.
If you are interested, you can PM me, I may be able to help you navigate the insurance site. I have a Medicare Advantage plan. The details of yours should be available on the insurance company website. If you haven't yet set up an online account through your current insurance, do that first. I used to have a Health Insurance license, so can understand a bit more of the "legalese" than the average patient, I think. Yet a few times I've called my insurance when I had a question, that person was fairly inexperienced & could not answer it. Online, all the details should be available, to download & read at your leisure if you like.
Like most insurances, the devil is in the details. Some people have a terrible experience with some of the Medicare Advantage plans. Not all are great. I like mine, I appear to be in a minority from what others here have experienced.
If you are thinking of changing plans, if you haven't yet gotten a Medicare account online at medicare.gov, get that too. I find it easier than trying to get someone on the phone to explain things. You can see what's available for your zip code. I've had agents for a plan give misinformation over the phone, so I prefer to see something posted/in writing.
Im glad you can help her navigate the plans. I have had clients that retired from working in a school that have retirement health plans connected to their teachers pension which has been difficult to navigate. Im on original Medicare with a Blue Cross PPO Medex plan. Unsure if this helped with getting grant money or Astra Zeneca to pay for the drug. Again, thank you for being helpful!
Thank you I have WellCare and they have been less than helpful on the phone. For some reason, they are unable to tell me what my yearly deductible is for this drug. Their book says that for the tier 5 that this drug is on, that amount is $425. That clearly isn’t true. I will definitely get a Medicare account online and see what I can find out. I think their out of pocket yearly maximum is $8,000 for drugs, but maybe not for this one.
It seems WellCare is in a number of states:
You ought to be able to register for online access through that if you already haven't done so, and view the details of your plan there, including out of pocket amounts.
However, I just went online to mine, and it was confusing, I could not find data easily. I noticed the mail order pharmacy for my insurance is CenterWell. I wonder if someone at your pharmacy might have more information as to out of pocket maximums. Have you tried calling the pharmacy, are you using your insurance mail order?
I have been talking to the pharmacy where my medication comes from. I don’t know if my mail order pharmacy would carry this drug. I haven’t had a conversation with my insurance pharmacy people. There seems to be a go between person who talks to them. I was put on hold for every question while he talked to them. I still never got a straight answer about my out of pocket maximum a year for drugs. He talked all around the subject. They aren’t very forthcoming with answers.
You can also apply to the drug company. All of our meds have some kind of drug assistance program.
Good morning. According to the Astra Zeneca site, the income guideline for 2024 to get help with medication is 500% FPL(Federal Poverty Level) because CLL Leukmia is considered a rare disease. I think the cap is around $75,000 a year for a single person. Go to AZ&Me to check it out. For other diseases the cap is $35,000. Hope this info helps!
Deductibles vary between Medicare drug plans. No Medicare drug plan may have a deductible more than $545 in 2024. Some Medicare drug plans don't have a deductible. In some plans that do have a deductible, drugs on some tiers are covered before the deductible.
Copied from Medicare site.
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