At a time when I was more in need of solid health insurance coverage than ever before, I found myself without it. This came about because of a misunderstanding of Medicare rules, based on incomplete and incorrect information provided by Medicare representatives.

I was diagnosed with metastatic breast cancer in 2014. Since 2016, I have been on social security disability (SSDI). During the application process, it escaped my notice that after two years on SSDI, you are automatically enrolled in Medicare. So when my “Welcome to Medicare” package arrived in the mail one day in 2018, I was thrown for a loop. I found myself enrolled in Medicare Part A (which covers hospitalization and doesn’t require payment of any premium) and Medicare Part B (which covers most of the other day-to-day medical services someone in my position requires – doctor visits, blood draws, port flushes, and scans – but requires the payment of monthly premiums).

We had good health insurance through my husband’s employer and needed to maintain that family plan to provide coverage for our daughters, who were attending school in Massachusetts. I didn’t see a need to pay an additional premium for Medicare.

I called the office of Social Security and Medicare and was told I could waive Part B because I was covered by my husband’s insurance, and wouldn’t face consequences more severe than a premium penalty when I did eventually enroll. I relied on this information and accepted Part A but declined Part B. This was a mistake.

A year and a half later, in February of 2020, I advised my health insurer that I was enrolled in Medicare Part A. They immediately began declining my claims that would have been paid by Part B – if I had it. It seems that, because my husband’s company employed fewer than 100 people, I wasn’t actually entitled to the waiver of which I had been assured. Furthermore, because I was Medicare-eligible, I wasn’t entitled to my husband’s primary health insurance either. I wouldn’t be able to get Part B coverage until July 2021 and my insurer would bill me for the claims they’d paid retroactive to July 2018 – a potential expense of tens of thousands of dollars.

I panicked. I immediately postponed upcoming medical tests and appointments (fortunately, my medications are covered through my insurer) and started googling. I found my way to the New York State Health Insurance Information Counseling and Assistance Program (HIICAP). A godsend for me, HIICAP provides “free and accurate information, counseling and assistance with Medicare and private health insurance.” In Monroe County this counseling is provided through Lifespan.

I found a friendly and supportive Lifespan counselor who advised me to make a formal request to Medicare for “Equitable Relief” and guided me through that process. I also received support from the staff at Congressman Joe Morelle’s office, who advocated on my behalf. Fortunately, my request was approved and I am now safely enrolled in both Medicare Part A and Part B retroactive to July 2018. I have a multitude of old claims to clarify, but am confident that I now have the insurance I need to continue my care uninterrupted. What a relief!

This story appeared in the Fall 2020 edition of Voices of the Ribbon newsletter.