Oral Parity for Cancer Drugs (Part 1)

When I was diagnosed with multiple myeloma, I had never heard of it.  As the doctor gave me the diagnosis, all I heard was incurable, broken bones, blood cancer and the rest was like the teacher in Charlie Brown. I was 49 years old, had always been in good health and cancer wasn’t on my radar nor in my family history.  Diabetes and heart problems…yes. Cancer…no. This was seven and half years ago. From that day on my unexpected education on the world of cancer, health care, and insurance began.

Going back even further, in 2001, I started a new job. I had just turned 40.  With the new job, I was presented with health insurance options.  And honestly, I had no idea what was what.  I was clueless on the differences between coverage options. HMO, PPO and so on were mysteries to me.  I asked my boss, a friend, what I should do. And thankfully I took his advice.  I’ve been quite fortunate that my medical insurance and prescription coverage has allowed me to see the doctors I need to see and to get the drugs I need to stay one step ahead of the cancer. And I’m aware that not everyone is in the same position.

What is oral parity?

With my 2011 myeloma diagnosis came an awareness of some common topics in the cancer world. One topic that I kept hearing about was oral parity.  When I first heard this, I had no idea what it was.  I incorrectly guessed it had to do with the effectiveness of oral drugs versus infused drugs.  I later learned that oral parity concerns the price that patients pay for their cancer drugs and is a huge issue.  There are inequities between what patients pay for oral drugs versus infused. Insurance providers classify oral chemo drugs as prescriptions, while infused drugs are treated as a medical expense.  This difference has a large financial impact on cancer patients.  Managing the disease is tough enough without having the financial challenges.

Once I learned what oral parity meant and the hardship this was putting on patients, I heard about it constantly.  As I said, insurance providers view oral chemo drugs differently than infused drugs. Infused treatment counts towards a patient’s out of pocket medical expenses and a maximum expenditure is reached after which insurance typically covers the expense 100%.  Conversely, insurers consider oral chemo a prescription and there is no cap on how much a patient may pay out of pocket.  In other words, oral chemo is not considered a medical expense. Patients are going bankrupt or are cutting their drugs in half or are just not taking their chemo drugs.  It’s not hyperbole to say that patients are dying because they can’t afford the cost of their oral chemo.

Oral chemo helps retain my normalcy

From day 1 of my diagnosis, I’ve done and continue to do both infused and oral drugs.  Oral drugs are more convenient and conducive to working and maintaining some semblance of normalcy.  Getting treatment by infusion is more of a time commitment, a hassle and an impact on daily routines.  When I was working full time, I’d schedule my infusion for late in the day or on Thursdays or Fridays, to minimally impact my job.  Cancer patients don’t want the disease to be an issue at our job, so we work harder and push through the pain, nausea, side effects and fatigue to stay employed and stay insured.  For me, weekends and evenings were for rest and recovery.  Working also allowed me to do something non-cancer related and give my brain a break.  Having oral chemo as an option allowed me to keep working.

However, not all cancer drugs are available in an oral form. Some must be infused under a doctor’s supervision.  Other chemo drugs are only available in an oral form.  A patient often doesn’t have a choice of how they get their treatment.  And to reiterate the point, the out of pocket cost of oral drugs can be much higher and much more unaffordable than the infused drugs.  As an example, my infused treatment, an immunotherapy, costs about $17,000 per month. With my insurance, I pay a percentage of that only until I hit my insurance’s specified out of pocket maximum. After that, insurance covers 100%.  My oral chemo is about $19,000 per month. My prescription benefit is such that I pay a fraction of that total amount. But I pay that amount every month with no out of pocket cap.  It is not rare for a patient to pay several hundred or over a thousand dollars a month for their oral drug month after month.

This situation is frightening.  We’re trying our best to stay alive and if we can’t afford our treatment this becomes overwhelming.  With Part II of this story, I’ll delve into steps that are being taken to rectify this inequity and what we, as patients, can do.

Check back for Part II of Oral Parity for Cancer Drugs.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Blood-Cancer.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (2)
  • Yolanda Brunson-Sarrabo moderator
    6 days ago

    Matt, great piece! I truly believe and see cancer is a money making business, and sometimes many of us don’t benefit from the end results. I’m saddened when I hear those with less than better insurance plans don’t get equivalent care like many others managing their condition. I’m even more saddened when I hear many can’t afford a stitch of the meds needed to get the process of treatment going. I hope the future calls for change and change now.

  • Carole McCue
    6 days ago

    Matt,
    Such an enlightening article and a horrible situation for cancer patients.
    Financial costs can be devastating. There are political groups lobbying to correct this unfairness.
    Thank you for bringing it to light.

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