The Back Road: Maybe I’ll pick a fight

The Island Now

Andrew Malekoff

As an 11-year cancer survivor soon approaching retirement, I’ve made some surprising discoveries as I prepare to make the transition from my group health insurance to full Medicare at age 70.

To provide some context, since 2010 I have been through several rounds of treatment, including chemotherapy, radiation, immunotherapy and an allogeneic stem cell transplant in December 2019, just before the pandemic. I like to joke about having had a three-month headstart using PPE – surgical mask, gloves and hand sanitizer. Why? Transplant wipes out one’s old immune system as well as the protections of prior vaccinations on the road to building a new one.

I learned early on that one of the risks of transplant is developing another life-threatening disease called Chronic Graft vs Host Disease (cGVHD). What is it? When the graft – the new stem cells, attack not only the cancer, which is the aim of transplant, but also attack the host – including one’s vital organs.

I have good news and bad news. The good news is that I am in remission from my non Hodgkins Lymphoma, a blood cancer. The bad news is that I have developed cGVHD. Thus far, none of my vital organs have been affected, only my skin and joints. It is uncomfortable but not life-threatening. My oncologists work as a team in analyzing my blood, reviewing symptoms and prescribing medications to protect me, to advance the growth of a new immune system and address cGVHD symptoms.

I’ll be retiring this summer. In preparation, I started taking steps to apply for full Medicare insurance. For readers who don’t know, there are four parts: Part A provides inpatient hospital coverage; Part B provides outpatient medical coverage; Part C offers enhanced coverage and Part D provides prescription drug coverage.

Everything seemed routine until Part D. There are a number of options to choose from depending on the medications I have been prescribed. There is an easy way to plug in the medications on a website search function and find out what they will cost me.

I discovered that one of the cGVHD oral medications that I am paying zero dollars for on my group insurance, has an average cost of $17,000 for a one-month supply of 60 tablets. Among the Medicare Part D choices is one which covers very high cost prescription drugs. This, my best choice on Medicare, would leave me with a one-third co-insurance cost or more than $5,500 per month – $66,000 per year.

My heart dropped when I discovered this.

There is an irony in working a lifetime with a salary and health insurance that go a long way to protecting me to a time in my life when I will have fewer resources to guard against exorbitant prescription medication costs, when I will need the care then more than ever.

According to a new report from the RAND Corporation, “prescription drug prices in the U.S. are more than 250 percent times higher overall than those in 32 other countries,” with the gap between prices even higher for brand-name drugs. In Canada, my medication is one-third the cost it is here.

One way or the other I will figure this out. My options include continuing with my group health plan for a limited period of time at a premium greater than the cost of Medicare, taking advantage of a specialty pharmacy to mitigate somewhat against high cost of the medication, taking less of the medication than prescribed to stretch out a month’s supply to two months or stop taking the medication altogether.

Although I have no regrets whatsoever about retiring, I did not expect to face this battle immediately afterward.

As a career social worker who fought for others to have insurance parity for mental illness, now I know from personal experience how some retirees feel, who live with life-threatening physical illnesses and are faced with scandalous, heart-breaking prescription medication bills.

In recent months, I have been asked how I will keep busy in retirement. I’m not sure. Maybe I’ll pick a fight.

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