Medicare Wasn’t Designed for Chronic Illness


I quickly found out once I began receiving Medicare that it isn’t what I thought it was. When I began to share some of the hurdles I was facing with other chronically ill patients who were not yet on Medicare I saw they had the same misconceptions.  I’m writing this blog entry to share my experience on Medicare with those of you who have yet to reach this milestone in chronic illness or to commiserate with those of you who already know the truth. I apologize in advance that this is perhaps one of my bleakest posts, but I wish someone had told me these things. It is my goal to help bring awareness to the reader for whom this applies vs. sounding like a whine-fest.

  • Misconception #1: Medicare does not cost you anything. Do you know a lot of Americans think Medicare is free? I chose traditional Medicare and I pay a monthly premium that is drafted out of my meager social security check for Medicare Part A (hospitalization) and Part B (outpatient services like doctor visits) that is double what I was paying  when employed. When these services are accessed Medicare only pays 80% leaving the other 20% up to the patient to pay out-of-pocket and you still have to meet deductibles for inpatient and outpatient services before they begin paying the 80%.  In addition, I also pay a premium for my prescription drug plan (Medicare Part D).
  • Misconception #2: If you get a supplemental policy to go with Medicare you won’t have to pay anything out-of-pocket. Because I am 47 years old, I couldn’t find any affordable supplemental insurance to pick up the 20% that Medicare does not pay. These insurers know that if you are not yet 50 years of age then you are on Medicare because of disability vs. retirement and are going to incur major medical expenses. The cheapest supplemental I priced was $260 and the highest was $900. Carrying a supplemental plan at those rates was not affordable and I felt the per month premium would be greater than my monthly out-of-pocket 20%. Some companies I called had a age requirements of being over 50, 62, or 65 before they would consider issuing supplemental insurance. In hind-sight, because of my age, it may have been better if I’d chosen Medicare Advantage which works more like traditional insurance.
  • Misconception #3: All healthcare providers accept Medicare. Not all healthcare providers accept Medicare.  In fact there is a growing percentage of health care providers that will not accept any new patients on Medicare. Some providers accept what Medicare pays but you still have to pay your 20%.
  • Misconception #4: Drugs are really cheap with Medicare. Last month I was out $500 in medication expenses which is more than my rent! If it had not been for the help of others, I would have had to go without medications necessary to life. It’s not a myth when you hear folks complain they have to choose between groceries and medication.  Under a Part D Medicare drug plan, there are three phases of payments for medications. I won’t go into these as I was fortunate enough to qualify for extra help with my drug expenses through social security which eliminated the phase called “the donut hole” where you pay full price for your prescriptions. This situation is best explained at: by searching for “donut hole”. Another frustration is that I no longer have access to the co-pay discount cards I once used under commercial insurance because most say in the fine print that Medicare is excluded which means I’m now paying $50-$100 more for prescriptions that were only $5-$10 with a co-pay card.
  • Misconception #5: Transitioning to Medicare is seamless and your current medical regimens will be continued. A month after becoming eligible for Medicare, I had to put a $7000 insulin pump in a drawer because they will not pay for the tubing sets that must be changed every 3 days. I have been forced to roll back my treatment 5 years and am on 5 insulin shots per day which are not helping. I’ve had two really close calls of  nearly having to be hospitalized because of my blood sugar levels because of this life-threatening decision that was taken out of my hands. In addition, I am required to take my blood sugar levels 4 times a day, but Medicare will only pay for 3 testing strips per day so do I skip that bedtime check of blood sugar level and trust that I don’t fall into a coma in the middle of the night? Medicare does not pay for dental or vision. As I type this, I have two front fillings that have fallen out due to dry mouth associated with Sjogrens disease and last month I was diagnosed with diabetic retinopathy which has changed my glasses prescription. There is no money to have these problems addressed. Currently, I need to have a surgical procedure done and the doctor wants me to pay his fee up front because it is uncertain that Medicare will pay because it’s not life-threatening.
  • Misconception #6: Signing up for Medicare is easy. I have a college education and I had to have help trying to figure out what choices to make when considering Medicare. I was automatically enrolled in Medicare Part A & B when the 24 month period was over. Medicare sent me packets of information 3 months in advance of my enrollment date. I had the option of rejecting traditional Medicare and signing up for Medicare Advantage which works more like traditional insurance. Honestly, it was difficult for me to figure out which route to go and then when I settled on traditional Medicare picking out a Part D Drug Plan required 1 hour on the phone with a representative from a state organization to help me find the best policy for me because there were 34 to contrast and compare.

I’ve been on Medicare for 4 months now and I don’t see things improving as bills are now arriving almost daily for three hospitalizations I’ve had this year for serious, life threatening conditions. I see a primary care physician and several specialists routinely and those bills are never-ending. Please don’t make the mistake I did of thinking that once you are on Medicare, your financial problems due to medical expenses will ease up. In fact, mine have worsened. It is literally to the point I’m going to have to pick which services I’m going to have to drop and which medications I’m going to have to stop taking to make it on my budget. I have hope that I can make some changes to improve my situation. Under Medicare you are eligible once at the end of the year to change your plan but you must live with those changes for the coming year. Hopefully this time around, I can choose more wisely.

My advice to anyone who is about to become eligible for Medicare due to disability:

  • Start reading the literature they send you in the mail early. It usually starts arriving 3-4 months before your eligibility date. Don’t wait until the week before your eligibility date or you will be overwhelmed.
  • Ask for help. There are several state agencies that offer free services to help you choose.
  • Explore both Medicare Advantage and traditional Medicare to see what they will pay given your chronic disease needs.
  • If you go the traditional route, make sure that your Part D plan covers all the drugs that you take. You can contrast and compare these online at at any time.
  • Verify that your physicians will continue to see you when you transition to Medicare.
  • Start asking your medical providers now if any specialty services you use will be covered under Medicare. (Ex: Biologic Infusions)


About Mischelle Jackson

I am a middle aged, single lady living with Rheumatoid Arthritis and other chronic illness which have led me into early retirement from a nursing career. I have a fur-baby, Jaycee, a Chihuahua, who makes me laugh and helps me get out of myself when I'm having a bad day. I crochet for relaxation when the RA allows. My faith sustains me.

4 responses »

  1. Michelle, you are half right in each of your misconceptions. I am a SHIP volunteer in Massachusetts but what I say below applies nationally. For more information specific to where you live go to your local senior center even though you are not a senior. It sounds like you have talked to them on the phone but go meet with them in person; your situation is complex.

    A few of the things I say below might somehow make your life easier… financially anyways. Good luck.

    1. Whether you choose fee for service (what you call “traditional”) Medicare or a public Part C HMO/PPO you will typically pay a monthly premium UNLESS you qualify for free Medicare under Medicaid. You talk about a meager SS check and you say you receive George Bush’s Extra Help program for drugs so perhaps you also qualify for free Medicare (or at least partially free). Go talk to a volunteer at the senior center
    2. On the supplemental prices you quoted, are those monthly or quarterly premiums? If quarterly that’s a pretty good deal but be careful because some Medigap plans do not cover the deductibles.
    3. It is true that most people can switch to a public Part C Medicare Advantage health plan in October to go in force January 1, 2015. But the good news for you is that because you are on Bush’s Extra Help program you do not have to wait until January–you can do switch effective September 1 if that a Public Part C plan is better for you (50% of new people on Medicare choose Part C over fee for service Medicare). But make sure your favorite doctor or doctors accept it. Public Part C Medicare health plans are typically HMOs (as I think you said) or PPOs.
    4. No provider dealing with Medicare can charge you thousands of dollars more if they do not accept assignment unless the bill was in the hundreds of thousands. Even if they do not accept assignment, the most they can charge is 15% higher than if they did accept assignment. (The real issue as you said is that many providers do not accept Medicare patients or new Medicare patients at all.)
    5. I don’t want to go into all the ins and outs of Part D in a comment and since you qualify for George Bush’s Extra Help program, nothing you say applies to you anyways. However, your description of how the three phases of Part D work is not correct. Since it doesn’t apply to you I can see why you would not understand it but you might confuse other people if you leave this bad wording on your web site.
    6. You might also qualify for state assistance depending on where you live.
    6. Call the Diabetes Association relative to your number 5 items. Life threatening is not the key. Medically necessary is the key (Medicare wont’ pay for glasses unless you have a cataract fixed but they will pay for the retina treatments.)
    7. Were the three hospitalizations while you were on Medicare? If so, something is screwy

    • Dennis, Thank you for your reply. As you suspected I did speak with a SHIP volunteer for my state who guided me through the process of trying to make the best choices for my situation. I meet federal poverty guidelines but not the state percentage to qualify for Medicaid. Oklahoma did not revise their Medicaid guidelines and dropped their state assistance program for hard to insure residents and opted for the federal programs offered through the Healthcare Marketplace. I appreciate your insight and the time you took to address my points. You have been very helpful. Trying to navigate Medicare has been difficult. I’ve called Medicare numerous times regarding some of these services and their answers to my inquiries are reflected in the blog as my experience thus far. I will strike the comments about Part D tier payment on medications as not to confuse anyone reading the blog as you suggested. The billing for my hospitalizations are just now going through and I have been able to correct some, not all, of the issues.

  2. Hi there, sorry to hear about the shortcomings of the US system. I guess we are somewhat lucky in the UK with the national health service (NHS). I just wanted to share with you this site: it’s a free information resource for RA sufferers. Let me know your thoughts, thanks.

    • Thank you for your reply. I did read the information at the above mentioned website. Thank you for sharing the information. I am required to eat a diabetic diet which restricts me. In addition, I’ve been tested for gluten sensitivity and none was found; however, I do personally know some autoimmune disease patients who have eliminated gluten and have had such positive results it reinforces the restriction.

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