Medicare Question

Can someone out there that has been through the medicare experience in the U. S. with CLL tell me about what Medicare will and will not pay for? Can I go to a Cancer Center that specializes in CLL with Medicare? Or the one pill a day treatment which is expensive but effective will they cover that? I am new to Medicare and new to CLL so it is a whirlwind to understand. I have not seen any posts on this and I am sure I am not the only one wondering about this coverage.

Many thanks,


18 Replies

  • Hi Kathy. My mom is 79 and battling mesothelioma and she is currently on Medicare with a supplemental Part D coverage from Aetna. So far they have paid for mostly everything the only issues we had were with these shots she needed after transfusions to boost her white blood cells. She goes to The Monter cancer Hospital on Long Island, NY (as do I) and it is a wonderful facility.

    My doctor explained to me that in order to prescribe some of the mess besides FCR he sometimes has to go through a few hoops for his patients on Medicare but said that for the most part they cover everything. FCR is still considered the front line treatment and it is unlikely you will be prescribed ibrutinib or one of the other drugs unless it is part of a study or if you have other medical issues that would prevent you from being able to get chemo.

    When I took her to the Specialist he introduced her to a social worker at the hospital who was able to answer pretty much every question we had about dealing with insurance and paying out of pocket costs. I'm sure your hospital has one you should request an appointment.

    Good luck, I wish you the best


  • Dear Peter,

    I am so sorry about your mom. I worked in a school that had asbestos in the ceiling and always worried about the possible health effects. Mesothelioma is rough but it sounds like she is really lucky to have a son like you. Let me say I am proud of you. She must feel your love and that is the best medicine there ever could be. Thanks for the information. Aetna will be on my list of drug providers next open season.

    I have had great success with Ultimate Flora Super Critical Probiotics. Healthy bacteria that help balance the "gut". I buy it on amazon and mix it in my morning yogert. It is gentle on your body and for me it brought both markers down that my doctor watches at my last appointment. (One of those is the white blood cell count.) This might be a good non drug option to restore balance in her body. Doctors are wonderful but they are usually not focused on nutrition. You could run this by her doc but chances are he may not know about this.

    You are lucky to live in N.Y. I live in the south but I will figure this out.

    Best of everything to you and especially your mom who did a wonderful job with you!


  • Thanks Kathy I will order her some on Amazon. It's crazy, I was diagnosed in nov of 2013 and it felt like my world was over. My mom was diagnosed in March of 14 and it gave me a reason to toughen up. Her first doc told her to get her affairs in order and gave her 1-3 months. tue chemo was killing her she was walking around with 1000 WBC , 25000 platelets and her hemo was at 1. Luckily she finally agreed to see a meal specialist and she has been kicking ass ever since. Today she ubered to the grocery store and then went to dinner with her hairdresser. She's a warrior and they don't make them like that anymore. I'm lucky to have her as a shining example.

    Where in the south are you? There are plenty of members from the US here I'm sure one will have some specialist recommendations. I was very fortunate that the attending hemo on call when I was diagnosed in ER was a CLL specialist. It makes a world of difference.

    Len gave an amazing informative answer about Medicare and I think you will be fine in that area. You're in the right place. W&W can be taxing but we're fortunate we have a light at the end of the tunnel. The treatments work and they work well. And they are getting better by the day. Best of luck keep me posted.

    God Bless,


  • Dear Peter,

    I can't even immagine how it must be to cope with two cancer challenges. Sounds like you are coping well and doing a great job assisting your mother. Warrior or not that is a lot to take on. I think a great support system is huge in dealing with cancer. For me this website is what I have and I am grateful. So a meal plan. That is SO interesting! Couldn't agree more. I have made some big changes in my diet. One big nutrition boost is my morning smoothie. Beats, kale, avacado, brocolli, carrots, red grapes with skins and seeds, frozen berry's, celery, banana, kiwi, spinach, ice/water etc. organic as much as possible. I add 2 scoops of Greens First Berry as I make a whole blender full and share it with my daughter. The energy from this drink gives you a boost you can feel and it tastes great. It would be interesting to know how your mom eats now on the meal plan that has worked so well for her. I am so happy for you that she is doing so much better. I feel a kinship with your mom........being a "fighter" is a very good thing. So I live in Charlotte, N.C. and with the website help I see there are two doctors on the list one in Greenville and one in Durham. I'm on watch and wait so I have to figure out my next move to an expert CLL doctor. All my very best to you and your mom. You have a unique situation where I'm sure you are a tremendous help to each other. God bless.


  • Hi Kathy,

    Medicare can seem very complex and confusing when you first begin, but fortunately once it is set up, it works fairly well.

    You can go to any doctor or hospital that accepts Medicare, and you should ask that question of the phone agent before making an appointment. Once you are being examined or treated, the doctor or staff must tell you if anything is NOT covered by Medicare IN WRITING. Then they must get your signature agreeing to pay. If they don't have your signature, they are prohibited from billing you afterwards (unlike most other health insurance in the USA- they cannot "bounce bill" you if Medicare denies primary coverage). The Part B - hospital charges have a 20% copay that you can purchase "supplemental" coverage - Type F from a commercial insurance company like Mutual of Omaha or Aetna.

    I could go on and on about more details, like the Part D prescription drug plans that you can purchase from commercial Pharmacy companies like Express Scripts/Medco.

    But it would be better if you used your state SHIP service- paid by Medicare see: or

    Those are staffed by trained volunteers that can teach you the intricate details and help you choose the right plans and coverage. My state had a 3 hour training class for citizens new to Medicare and then offered appointments to meet with a counselor for specific needs.

    You asked about a Cancer Center that specializes in CLL, but it is better to choose a doctor that specializes in CLL, and many of those are at large University Hospitals, not necessarily connected to commercial hospitals like Cancer Centers of America.

    Suggest you use this map to find a CLL specialist doctor:

    Once you have digested the details above, please ask us more.


  • Dear Lenkeck,

    That has to be the best Medicare answer I ever received! I know there are a lot of other souls on Health Unlocked that will benefit from your answer too! Many, many thanks. I am so grateful.


  • You can definitely go to a speciality center. I've had CLL for ~14 years and always gone to M.D.Anderson Cancer Center in Houston, the last 6 or so years on Medicare.

    Medicare Part A/B doesn't cover ibrutinub normally but my Medicare Part D prescription drug plan (Blue Cross of Texas) does with a "Specialty Drug" notation, meaning you don't get it automatically. You & your doc have to make the case. I haven't ever done that since I get mine free via the clinical trial I'm on.

    Besides MD Anderson, some other big name cancer centers with noted leukemina/lymphoma departments are Sloan-Kettering in New York and the Ohio State University Comprehensive Cancer Center in Columbus Ohio. Also one at U. of California at either Irvine or San Diego; forget which at the moment.

  • Dear Lab Rat,

    You are very lucky to have Blue Cross of Texas as a backup. I was on Blue Cross too and they were great but had to switch at Medicare age. Hate that ibrutinub will have to be a "fight" because I no longer have the best health coverage. Sounds like it worked out perfectly for you with the trial. How is it going post treatment? Do you know what drugs you are/were on during treatment? Or if you are in a trial I guess you may not know yet. Either way let us know how you are getting on. I appreciate your help.



  • I would look to The CLL Consortium first...

    Also Dr. Sharman's List

  • We got my husband's doc, Nicole Lamanna from Dr. Sharman's list, so I would also recommend that resource. I'm starting the search for Medicare, my husband will be eligible in January, and we were told that since he's already on Ibrutinib (started last week), it will likely be easier to get it approved/covered. Fingers crossed :)

  • I met Dr. Lamanna at the Spring CLL LIVE 2015 conference and she impressed me immensely !

    Here is her presentation...

  • Chris,

    Thanks so much for this important link. I am fasinated by the discussions of CLL by these experts. I am sure I will watch this many times over. I am thinking it might be wise to travel to Houston Texas for a second opinion and treatment when necessary. I guess until then I can just use a local oncologist during W&W if my markers stay in the "good" zone. I have family in Miami and I see there are some treatment centers there too. It's a lot to process. I guess "old age" won't be boring but I'd rather be fishing!

    Thanks again,


  • can I ask what hospital you guys use? I'm very happy at Monter Center in New Hyde park it's LIJs Cancer center but my doctor might be leaving.

  • I would be going to LIJ... they have a very well developed CLL program under Kanti Rai...

  • Yes Chris,

    Living in New York or even California with CLL there are lot's of great options. Dr. Kanti Rai is a great recommendation but unfortunately I live in North Carolina. In your opinion would it be worth relocating to see the right doctor? Watch and wait is one thing treatment is another right?


  • Kathy

    Jacksonville Mayo clinic has a good CLL team... you really don't need to see an expert until treatment is indicated, unless you are high risk... you might want an earlier second opinion, some patients do that...

    Might be closer to NIH in Bethesda...I don't know...

  • Dr Lamanna's at NY Presbyterian (168th St)

  • Yes, she's tops! The persistence of PRCA has been challenging for (even) her, but it's helped to remember that we're all human here, even when things haven't gone well... we drove to Cleveland last month to a PRCA doc, and, fortunately, they agreed to speak to each other, and they resolved what seemed to be an impasse in approaches. Hence, Ibrutinib, and a hope the PRCA resolves....

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