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Are You Looking For More Health Insurance? Not So Fast

I didn’t realize when I was diagnosed at the tender age of 28 that in midlife I’d have a permanent scarlet letter emblazoned on my forehead that said:


During holiday season the Ho, Ho, Ho feeling that was supposed to happen was quashed by the seemingly fruitless search for either secondary or long-term care insurance.

Why did I suddenly decide to (try to) get more health insurance? I had a wake-up call for reasons that will remain my own for now, and after these events happened I began to have nightmares that abruptly woke me up in the middle of the night. Nightmares about my mortality, a future of MS progression, or visions of becoming a complete burden to loved ones.

It’s a dark place to be in the middle of the night.

If I had an accident or my MS progressed without having additional insurance, I’d be unable to pay for countless necessities to maintain some semblance of a quality life. There could be an endless stream of doctors and testing, nursing aides, physical therapists, psychotherapists or extended hospital stays due to disability.

I’ve watched love ones begin their own healthcare journey when illness came knocking on their door, so I understand how exorbitant the cost of good healthcare can be.

When I was younger and working full-time I was always covered under a group policy. When I couldn’t work full-time any longer due to MS I went on disability and Medicare became my secondary insurance.

The group policy was the Cadillac of policies and covered nearly everything. Then, several years ago, my husband became a solo practitioner and now pays for his own insurance. That’s when Medicare became my primary carrier. I have no secondary insurance to rely on.

So far Medicare has worked fine for me. It even covers my gynecologist who doesn’t accept insurance but does accept Medicare.

But I’m not kidding myself about things remaining the same forever. I’m nearing my next birthday that is leaning closer to 60, and even though I feel younger than I am my body has been on this planet for over 50 years.

It was time to make some calls.

I phoned an insurance agent who was recommended to me. His voice and manner was highly motivated to get me signed up. At first. Near the end of our conversation he heard the two words he probably hates the most: Multiple Sclerosis.

MS is on a short list of diseases that no carrier of long-term care insurance will provide. I was flatly told I’d never find a company to insure me. I was ever so casually, and thoughtlessly, tossed aside in a matter of one sentence.

I felt like a pariah.

I left a voice message for another insurance agent who was highly recommended, one who allegedly was an expert in secondary insurance. She didn’t return my call. I left a second voice message. No call back. Finally I called a third time when she breathlessly told me she was running out the door and promised to call me back. I called again and lo and behold I spoke to her. She asked me several questions and when she was done I mentioned I had MS. She audibly gasped. Then silence.

She told me she’d put together some names and email them to me. I never heard from her.

She got my dander up so I called her yet again. When she picked up the phone I think she was shocked to hear my voice. I blurted out how rude she was, telling her she was dealing with a human being who happened to be living with a disability. I asked her how she dared to treat someone so shabbily. She swore she’d have the information to me that Friday.

I never heard from her.

Ordinarily I would have phoned other insurance agents but I was so angry at the way I was treated I knew I had to keep calling this agent until I felt some closure. As my father always told me I’m just obstreperous. I guess he was right all along.

In my mission of educating others about MS to spread awareness about our disease I continue to be flabbergasted at the arrogance and audacity of some people. We are all equals. We didn’t ask to have MS, we simply have it.

In the end the only thing this arrogant, rude and ill-mannered woman told me was that I wouldn’t qualify for secondary health insurance until I turned 65.

In the meantime I’ll worry and be concerned about the future of my health. I’ll do everything in my power to remain as healthy as possible and pray that my doing so will be enough.

We’ll also be meeting with a financial planner to find out if there are other ways to plan for the future. I know that long-term care insurance is expensive. Perhaps he can advise on other avenues we haven’t thought of to save money in case of an emergency. We shall see.

If you have any thoughts on health insurance I’d love to hear them. It’s a conversation we all need to have.

For your information:

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.


  • MarcieKim
    3 years ago

    It’s inexcusable that anyone would be so insensitive toward you – but we have had the same experience.

    For a company to be unable to insure someone with MS is understandable – it’s an incurable disease that’s very expensive to treat. My husband has progressive MS and our premiums reflect a pittance of what BCBS pays out. It all comes down to business models, actuarial tables and, ultimately, profitability.

    Because my husband’s illness is progressive and has moved aggressively, we met with several lawyers. (The first call is always free and has so far been really informative.) We picked one who is helping us write new wills ($500 to do both wills plus our living wills, power of attorney and healthcare proxy, too… so pretty reasonable). The attorneys at this firm spent two hours with me explaining the financial impact of long term care. Net net, it goes like this: Whenever Bryan requires long term care, we will pay what we can for as long as we can, churning through MOST of our assets. The state allows me to keep our home, a car, and a modest bank balance. Once we hit the magical bank balance (which varies by state) then Bryan qualifies for Medicare and they cannot come back to me for any more money. I can then begin rebuilding my retirement. This isn’t a great scenario for a couple of 45 year olds, but I find comfort in knowing Bryan will be able to get the care he needs without the kids and me having to live in cardboard boxes under a bridge.

    More should be written about how that process works. I read WAY TOO MANY posts and comments on here about young adults providing at home care for disabled parents as the expense of having their own lives. It’s awful – and unnecessary.

  • MarcieKim
    3 years ago

    TYPO: I meant he would then qualify for MEDICAID once we run through our assets.

  • Azjackie
    3 years ago

    Ah yes insurance…I really do not have anything positive to say about insurance or the physicians who have forgotten their “Hippocratic Oath”. My Neurologists’ have dropped Medicaid and Medicare patients.

    For me AZMedicaid will stop April 1st as I’ve been on SSDI for 2 years. Social security administration has automatically enrolled me in Medicare part A and B.

    Part A (hospitalization) has $0 premium due to permanently disabled. Part B (physicians) automatically withdraws from SSDI a monthly premium, bills for; annual deductible, co-payment, and co-insurance.

    As I am not able to be employed and my monthly SSDI is consumed by cost of living, Part B will not happen. Neither of these assist or cover my $11,000/month MS prescriptions (Medicare part D-separate premium, deductible, co-pay and co-insurance).

    I am at withdrawing from Medicare part B, trying to find cash pay Neurologist, and filing for drug manufacturer prescription assistance. If I fail, no medication or physicians. Emergencies, ER through county hospital.

    Funny thing when I was employed my income was consumed by general cost of living and insurance. In fact $10,000 from savings in addition.

    I am 45 years old, never married or had children. I had been engaged 6 times pre-MS. I broke them always finding something wrong. I was obviously being sent a message.

    I do not think beyond the moment and can’t afford this disease.

    I am not a negative person and have fun with family and friends. I just consider myself lucky I lasted this long and I think of others who have life worse.

  • Beemerguy
    3 years ago

    I’m not sure why you are having the trouble you are having. I too was on a Cadillac plan and was kept on it not for the 18 month COBRA period but over 5 yrs. (I went out on disability at age 50.)

    I’m not sure why but I do have my suspicions. I’m not complaining.

    I finally was required to go on Medicare at 55. The only option for me or anyone in my state under 65 yrs old is to buy the Blue Cross Blue Shield supplemental policy.

    It’s been great. My actual out of pocket is not much different from when I was on my private policy. I pay more for the policy premiums,I pay much more for Drugs now in schedule D (MS drugs are expensive as if you need reminding. In 2019 out of pocket is supposed to drop and even go away.) but virtually nothing for Dr visits etc as Medicare doesn’t have co-pays.

    I now live in one of the poorest states. I am thrilled I have the Blue Cross option.

    In my early research I found most if not all states had at least one Medicare supplemental policy option for those of us under 65.

    It’s been a great experience. Except Schedule D with the early out of pocket then the never ending 5% Co pay once you’ve spent $6,000 is too expensive for most Americans. If you are like me (on MS drugs) your annual drug cost is over $65,000. If you hit $100,000 your out of pocket is over $10,000. Plus premium cost.

    This is a big burden on most Americans and a penalty for those of us who have illnesses that require very expensive drugs. (Copaxone has risen in price over 200% in the past decade a discussion for a different day)

    Not all illness is equal.

  • kitminden
    3 years ago

    It depends on each state and what deal it has made with Obamacare. It makes no sense for us, but it’s the way laws are in the US. Terrible…

  • Beemerguy
    3 years ago

    I have a correction, Medicare pays 80% you are responsible for the reminder 20% this is what the supplemental policy is for. It pays for the 20%. If you have supplemental insurance you are not out of pocket.

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