Spreading the Word About Safety Nets


Recently, a great blog run by a cancer pal called Help Keep A Sister Alive www.helpkeepasisteralive.com (what’s not to love about that name?) asked me to write a guest post on Medicare basics. Now they know I am no expert but they also know peer to peer sharing of the basics can be more powerful than confusing expertise. We all know someone younger dealing with a medical crisis. What they and you might not know is that Medicare and Disability/Social Security can help. Another truth is that Medicare and Social Security are increasingly presented as programs that could be cut – symbols of big government and we hate that. Right?

Medicare and Social Security may be two of the greatest programs of our government. They insure very basic safety nets, unless we think homelessness combines well with a cancer diagnosis or old age. People need to know about them. Read the below and share so that folks facing a crisis may find some financial help albeit fairly modest.

And consider what kind of shape our communities might be in if we tossed aside our current sick health care system chaos and instituted Medicare for All.

A Safety Net for Everyone

Medicare for Anyone with a Medical Catastrophe & Under Age 65

By Marcy Westerling   November — 2014

Medicare is more than the medical program offered to seniors over the age of 65. Medicare provides health care coverage to catastrophically ill people at any age. Those under 65 may enroll in Medicare if

  1. their disease is listed under the Compassionate Allowances
  2. they enroll in disability under Social Security Disability Insurance (SSDI) (should be easy for those who qualify for SSDI under the compassionate allowance aka automatic disability impairments)
  3. they can survive, literally and financially, for the two years of receiving SSDI before Medicare kicks in.

Accessing Medicare when you are under 65 can be confusing. First, few of us are aware of our eligibility and able to afford the waiting period. Second, the system is geared for elders. Other younger people on disability and Medicare can be your best guides.

In 2010 after I was diagnosed with stage 4 ovarian cancer, I slowly recognized that I needed Medicare so that I could leave my good but not good enough HMO. Medicare was my ticket to being able to access the best doctors for my disease wherever they are located and to compete for the best clinical trials.

A chance comment overheard shortly after my diagnosis suggested that I might be eligible for disability. I learned basics like disability is actually SSDI – social security disability insurance. Days later I called the local social security office and a friendly woman not only affirmed this new information but also quickly offered to complete all my paperwork, the short forms of the compassion clause, and to mail them to me. She then asked, “Honey, do you think you can get it from the mailbox, sign the three spots I flag and return it in the return envelope I provide?” This was a far cry from the harsh fight for disability claims I had heard from ill friends where they needed to “lawyer –up” and plan to fight for years. The compassion allowance is a zippy, user-friendly process but you need to be catastrophically ill.

Finding a local social security office to call and using the right language welcomed me into an easy process. Do not give up if your initial contact is a little less perfect. It took me awhile to understand the different rules – five months from start of disease before the first check will arrive, another two years before Medicare enrollment, who to contact when, but despite confusion, it has been relatively easy process. Two years and four months after being diagnosed, my invitation to Medicare arrived in the mail. (Actually, it got lost in the mail but that is another story.)

The most valuable card in my wallet!

The most valuable card in my wallet!

I knew from other patients that I needed not only to make decisions about enrollment in Medicare but also to select a supplemental policy (aka Medigap). Medicare Part B medical insurance typically only covers 80% of approved costs for cancer care. A supplemental policy is key because it covers the remainders of costs on whatever Medicare has paid for but not fully.

I have been on Medicare since October of 2012 and have had all my numerous medical bills from four different states paid in full. I have faced no restrictions under Medicare Part B and I have needed significant medical treatment. Unfortunately not all states require insurers to offer supplementary plans to those under 65 on Medicare. A list of the states that require the offering of Medigap policies can be found here. http://www.medicare.gov/supplement-other-insurance/when-can-i-buy-medigap/when-can-i-buy-medigap.html#collapse-2239 General information about Medicare and Medigap can be found here. http://www.medicare.gov/pubs/pdf/02110.pdf

The prescription drug plan, Medicare Part D, is a tougher story. Selecting a plan is typically based on the drugs you are currently on. For medically needy people it is much better to imagine the medications that you might go on and select a future oriented plan. For cancer patients in particular, we are in a tough position where infused drugs (covered under the very generous Medicare Part B) are increasingly being produced in pill form (covered under the very inadequate Medicare Part D). I am currently navigating these waters. It is clear that we would all benefit from pushing for categories of pills to fall under Medicare Part B through what are called Oral Parity laws.

Finding a Medicare insurance broker in your state to navigate the many choices is ideal. They should not need any payment from you and can plug you into the system to seek the best matches for your medical concerns. This New York Times article http://www.nytimes.com/2014/10/04/your-money/beware-of-shifting-options-within-medicare-plans.html?emc=edit_th_20141004&nl=todaysheadlines&nlid=55177073&_r=0 narrates the basics of Medicare today.

Medicare and Social Security are threatened with changes that may make them less available. If you like the programs, share why with your neighbors and family and the basics of what they do – this will allow others to realize they might be eligible and for our country to consider the merit of maintaining such a safety net for hard times. These programs have allowed me to stay alive.



About marcy westerling

I am a long time community organizer with a passion for justice and founded the Rural Organizing Project in 1992. Derailed by a Stage IV Ovarian Cancer diagnosis in spring 2010, I have stayed in treatment since then. I am learning how to embrace livingly dying and hope that by starting a Phase One immunology clinical trial at UPenn in spring of 2013 I will have more time to find the sweet spots of thriving while terminally ill.

12 responses »

  1. I’m so glad to hear it was an easy process for you. I’ve been struggling with Medicare Advantage and Medigap since returning to Oregon. And I’m over 65! I’ve met with all sorts of “experts” and still I get a policy that either pays little or has a high premium. I’ll check out the NYT article. Thanks!

  2. Marcy
    I follow your posts carefully and feel so honored that you share your journey with great honesty and wisdom. I am curious which Part B you chose…I have “ills” as well and was fearful of an advantage plan like Providence or Regence so went with a Plan F from Stonebridge Life. You mentioned you were able to access various doctors and so I wondered if you would share your Part B?

  3. You made the system of medicare seem approachable, doable, even friendly. I am looking forward to turning 65 in a few years and having my turn come up to apply and learn the B’s and D’s. I do hope we not only manage to keep medicare for us elders and the compassionate allowances and people with disabilities, but expand it to cover all citizens.

  4. Excellent article, Marcy. Will repost on Health Care for All Oregon and HCAO Educational Fund websites. We will be bringing 2500+ supporters to Salem Capitol Steps on Feb 11 in support of universal, publicly funded health care for Oregon. Everybody in, nobody out!

  5. Huge thank you for writing this! I am one year into my waiting period but I will hang onto this for when I qualify. Great information!

  6. Thank you, Marcy. We keep hearing the sad stories of financial ruin because of illness. This information should be more widely known. I’ve posted it on the HCAO website, FaceBook, and Twitter.
    Joanne Cvar

  7. Thanks both for the specific information and guideposts, as well as a reminder, in a week when politics was incredibly dispiriting for many of us, of the importance of safety nets for various groups of people and the incredibly valuable role of government, especially when leaders thinks BIG and act with compassion in ways that promote inclusion, social justice and public generosity.

  8. I turned 65 in Feb and went on Medicare. Fortunately, I was diagnosed with cancer before I had to sign up so I knew to find a Plan F (thanks to the finance ladies at my onc docs office who recommended I look at that plan). I looked at the monthly premium then looked at how much I would have to pay in co-pays and deductibles; Plan F won hands down. And the Plan D I chose has $0 cost for most of the drugs I’m taking. I’m happy with what I picked.

  9. Thanks for sharing, Marcie. Medicare & supplemental plans can indeed be lifesavers! Talking with SHIBA, agents, or navigators is free and helps people get the info they need to decide their options. For over 30 years I’ve been honored to help untold numbers of people as an independent agent. Organizing to expand Medicare & Medicaid for all (instead of cutting it as some politicians want) is urgently needed now.

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