Learning that you have multiple myeloma can be a shocking, life-changing experience.  It certainly was for me!

There are tests, painful procedures, lots of drugs, and the anxiety of whether your treatment is working.

Being diagnosed with multiple myeloma was tough enough without having to battle my insurance company to pay for the therapies my doctors recommended.

In some ways, I found dealing with my insurance company at the time was more stressful than living with my cancer.

At age 51, I was relatively young and otherwise healthy.  I was also self-employed.  But even though money was tight, I had the foresight to purchase a Blue Cross/Blue Shield major medical policy four years before.

When you invest in a comprehensive insurance policy from a well-known company like Blue Cross/Blue Shield, I expected my necessary medical expenses to be covered without investing a lot of time and energy.

Was I wrong!

Early on, I was relieved to learn that the Mayo Clinic, which was located just over two hours away from me in Rochester, Minnesota, was on my preferred provider list.  So far, so good.

But when my myeloma specialist prescribed Revlimid ^[1] (lenalidomide), which at the time was a new, oral chemotherapy drug, my insurance company refused to authorize it.  It turns out that Revlimid was not approved by the U.S. Food and Drug Administration for newly diagnosed multiple myeloma patients.  My insurance company insisted I use the older version, thalidomide ^[2] (Thalomid), first.

With help from my doctor and Mayo Clinic insurance counselors, I appealed the decision three times.  The first two appeals were denied, based on the fact I had never been treated with another therapy before.

But the third time, I tried a new approach:  Having used dexamethasone ^[3] (Decadron) and undergone radiation therapy immediately after my diagnosis, I argued that this was my second line of treatment.

My insurance company blinked and agreed to pay for the Revlimid.

The appeals process was time consuming and stressful.  But in the end, all of our hard work paid off.  My insurance-related struggles were over, right?

Wrong!  The good news was that Revlimid worked so well for me, my myeloma was almost gone in three short months.

At that point, I had a choice to make:  Get my stem cells harvested, then continue taking Revlimid and dexamethasone, or proceed immediately to transplant.

I chose to harvest and then wait.  That is, until Blue Cross/Blue Shield refused to pay for my “collect and store,” as it’s called.

How crazy!  They would pay to collect my cells if I proceeded immediately to transplant, but not if I decided to wait.

Again we appealed.  And once again, we won.

In retrospect, the hard work and stress was worth it.  I believe I made the right decision, having delayed my stem cell transplant for over four years.

I share my insurance-related experience because I’m not sure newly diagnosed patients realize that their insurance company or the government (for those on Medicare/Medicaid or those in other countries with government-funded health care) could deny coverage of their treatment.

But as I illustrated above, it happens all of the time.  And unlike my experience, appeals aren’t always won, and preferred therapy options aren’t always approved.

This is a big topic—much too large for me to cover in one column.  But it is so important, I would like to spend the next week or two addressing these important questions:  Is treatment for multiple myeloma a privilege or a right?   Should private insurance or the government be able to deny certain types of treatment (stem cell transplants for the elderly or high-risk patients, for example), or should a patient be guaranteed the type of treatment that their doctor determines best?

You can bet I have strong opinions about this.  Some of you may agree, and some of you may not.

But starting this discussion may help us grasp a better understanding of our options.  Because after all, the goal here is to receive the best available anti-myeloma therapy—while making sure the bills get paid.

Until next week, feel good and keep smiling!  Pat