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An overwhelmed man looking at circles containing health insurance, medicine, a dollar sign, a stethoscope, and a cancer ribbon

Medicare It Is

I was diagnosed with multiple myeloma in 2011 at 49 years old. At the time, I’d been at my job for about 10 years. When I started this job in 2001, I was offered a couple of different health insurance options. It was HMO vs PPO. I grew up with Kaiser and had never really been sick prior to 2001 and it worked just fine. I simply planned on signing up for the HMO offering. It was cheaper and I figured I’d never use the insurance for anything major. Fortunately, my boss and friend suggested I sign up for the PPO because, “you just never know when you might need the flexibility that PPO provides.”  That meant nothing to me at the time but I heeded my boss’s advice. After my diagnosis in 2011, I needed to see a couple of different myeloma specialists to help find a treatment that would have some traction fighting the cancer. The insurance I had blindly chosen in 2001 turned out to be the right choice. It gave me the flexibility to see the doctors I needed to see.

Health insurance is confusing

I’m not saying I suddenly understood the differences in insurance and how it all worked.  Honestly, it took me about a year to be comfortable with receiving prescriptions via the mail. And thank goodness my wife handled the medical bills and could talk to the insurance company and doctor’s office about proper coding. For me, it was like learning a new language.

Retiring from work after my multiple myeloma diagnosis

In 2017, I retired from work. Even though I had started a new effective treated, an immunotherapy that had fewer side effects, I felt like my quality of life was really suffering. All available energy went towards work. At home, all I was doing was eating and sleeping. I had a decent pension from work and because of my myeloma diagnosis, I qualified for Social Security disability. Those two combinations and my wife’s income made retiring doable. We still needed health insurance and were able to stay on the group policy from my employer, provided I pay the entire premium. I was fortunate in that the Leukemia and Lymphoma Society has a co-pay assistance that helps pay for my insurance premiums.

Medicare and multiple myeloma

After two years on disability, you must go onto Medicare. So even though I am “only” 58, in January 2020 I start Medicare. My wife is not yet Medicare-eligible, so we need to maintain private insurance for her. I started to try and understand my options a few months ago, and, just like with my insurance in 2011, it was time to learn a new language.

Learning about Medicare

I spoke with myeloma friends on Medicare to learn how they managed it. I spoke with my primary oncologist and I watched webinars. Triage Cancer was the biggest help.  I attended a presentation they did at a local support group and spoke with them on the phone a couple of times. Also, I began paying attention to all the Medicare commercials on tv.

What I learned is that Basic Medicare is Part A and Part B. For a cancer patient, Medicare will cover about 80% of treatment costs, provided it’s infused in a doctor’s office. But the remaining 20% isn’t cheap and I need something additional. The two options are 1) a Medi-Gap plan that supplements Part A and Part B and will cover the remaining 20%, which can be in the thousands of dollars a month or 2) a Medicare Advantage Plan which basically replaces A & B. But an Advantage plan functions much like an HMO, in that the in-network doctors can be limited. My oncologist told me to check with my specialist and other doctors to see what they accept. Good advice; my myeloma specialist and dermatologist don’t take Advantage, so for me, I need to supplement Parts A and B. For some folks, Advantage works great, but for me, that’s not the case.

Oral parity for cancer treatment

In a past post, I discussed the need to have Oral Parity with cancer drugs. Cancer drugs that are oral and taken at home are treated differently than infused treatment by insurance companies. If you’re on Medicare, oral drugs are treated as a prescription and aren’t covered by Parts A and B, and even a supplement or advantage plan likely won’t cover the oral drug. So, I need a Part D policy, for prescriptions. For the past month, I’ve been working with an insurance broker and doing my own research to find a Medicare supplement, and most importantly a Part D provider that will do a decent job of covering my oral chemo. I’m almost there. But even with a good Part D policy, oral chemo can cost a patient anywhere from several hundred dollars to over a thousand dollars a month. There is also this mysterious donut hole or gap period, where Part D doesn’t cover the drug. While the donut hole is shrinking in 2020, there will still be a significant cost in January. My oral chemo is about $18,000 month, so even with Part D, I’ll have an out of pocket of nearly a thousand dollars a month. Yikes, right?

Finding copay and insurance financial assistance

Meanwhile while searching for plans that work for me, we’re still needing to find a good private PPO plan for my wife. I think we’re almost there with finding plans for both of us. But talk about stressful, this whole effort has almost pushed me over the edge. And while for some, going on Medicare can be a cost savings, for me it might not be so. Ideally, if I could keep my private insurance, I would. But I can’t. So Medicare it is. I want to give a shout out to the Leukemia and Lymphoma Society Co-pay Assistance Program and Healthwell Foundation which offer both copay assistance and Part D assistance. Their assistance isn’t a given, but I’m hoping this will relieve some of the stress and costs. Now that I better understand how this all works it’s no surprise that cancer patients go bankrupt or simply don’t take their oral chemo. It’s an absolutely crazy system.

My advice is to do your homework

I must caveat this whole post by saying that I’m no expert and what works for me, might not work for everyone. But I hope this brief Medicare overview proves to be at least a little helpful. My advice summary is to start doing your homework early, reach out to other patients on Medicare, talk to your doctors, watch webinars or attend educational events, and stay calm.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • Ramae Hamrin moderator
    3 weeks ago

    Thank you so much for this timely information. I go on Medicare next year, and I didn’t know that it was a must. I am still on COBRA through my former employer with a plan that pays everything but the deductible, so I would love to stay on this plan if I could. I have taken your advice and started early, though. I called an insurance agent who told me to call back in July, when I get my Medicare papers. He reassured me it would be fine. I’ve never heard of the Healthwell Foundation, so thank you for mentioning that! LLS has been a godsend. Please keep us posted on your experience. This is such valuable information, and will help me, for one, stay calm.

  • Ann Harper moderator
    1 month ago

    @mattg Wow! That sounds confusing and scary! I don’t understand why you can’t keep the insurance you have now – you were the one paying for it. This messed up your insurance and your wife’s and I just dont get why. I’m glad you’re able to work through it and are finding the coverages you need. It is also a blessing that you are getting help from the Leukemia and Lymphoma society co-pay. My daughter raised a lot of money for them one year and it’s nice to see that it goes back to the people who need it. Good luck to you. I hope you get time to write a follow-up post.

    1 month ago

    I have been struggling with the stress of health insurance and medical expenses since I was diagnosed. We got a very quick education on specialty drugs when I was diagnosed with Mm. Now every year when we renew our private insurance, we come with a list of potential drugs I might need, and a calculator to pick our plan. Next year my husband qualifies for medicare, but for me that sounds like the scariest insurance I could pick.

  • brlcjor
    1 month ago

    Thank you for this posting. New valuable info.

  • Yolanda Brunson-Sarrabo moderator
    1 month ago

    Matt, this was such an informative piece! I don’t think many know that there’s options out there. The problem with options sometimes is you have to do the work to see what can help your situation. Thanks for doing the homework. Best!

  • JaneB
    1 month ago

    Thanks for the advice and for sharing your learning experience. I’m 61 and trying to get disability but apparently not every state thinks having to deal with MM cancer is a qualification, so I’m not sure I’ll ever get there. In the meantime it is good to know what I should start looking into concerning how to get the best coverage for my future needs when ever I do make it to medicare eligibility.

    1 month ago

    Good advice. I went through the same drill: mandatory Medicare for me at 62 (also did standard with Medi-Gap and separate drug plan) and having to get wife standard coverage. Both took days and days of research and much head scratching. I have a law degree and am used to complex materials. I wonder how people get through it.

  • Daniel Malito moderator
    1 month ago

    @mattg Medicare is a labyrinthine quagmire of paperwork and regulations that only someone who is half robot, half accountant, and half bureaucrat can tackle. Yes, that’s three halves, but that’s exactly right for an institution like Medicare. I had to fight all the way to an Administrative Law Judge once just to get them to pay for the meds I had been taking for 10 years prior. It’s an education, that’s for sure. Godo info. Keep on keepin’ on, DPM

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