When I stopped working due to my multiple myeloma, my biggest concern was how I was going to maintain my health insurance.

Through a deal I negotiated with my partners, I was able to stay on our group health plan for a while.  When my former group merged with a larger group, this option was no longer available.  Since the group plan was being dissolved, COBRA insurance was also not available.

After much anxiety and research, I discovered that since coverage was continuous and COBRA insurance was not available, I was eligible for something called an Individual Conversion Plan through the same insurance company.

I have to say, the coverage has been very good.  While the plan is not cheap and has a high deductible and high out-of-pocket maximum, it has covered me through an autologous stem cell transplant (using my own stem cells), an allogeneic transplant (using stem cells from a donor), and some pretty out-of-the-box drug regimens including Velcade ^[1] (bortezomib), Revlimid ^[2] (lenalidomide), and Zolinza ^[3] (vorinostat) together at one time without a hitch.

Because of disability, I became eligible for Medicare as of January 1.  I had always felt that once I became eligible for Medicare, my health insurance concerns would pretty much be over.  I would switch to Medicare, reduce some of my health care costs, and be covered for life.  I jumped at the chance.

Then I read an article in the New York Times, which seemed to be making the rounds in the myeloma world.  The article, “A Health Insurance Detective Story ^[4],” was written by Frank Lalli, a former editor at Money magazine and multiple myeloma patient.

The gist of the article was that his supplemental Medicare plan was changing, and he was trying to find out how much his Revlimid was going to cost under the new plan.  As a trained reporter and financial expert, 70 phone calls later, he was unable to get a firm answer.  He got answers ranging from $20 per month to $17,000 per year.

Hum, maybe it wasn’t as simple as I thought.  Maybe I hadn’t asked enough of the right questions.  Was switching to Medicare really the best option?  To me, this came down to three questions.

The first question was: Could I really stay put with the plan that I was on without being forced off by becoming eligible for Medicare?  This was unclear to me.

According to the Florida Statute regarding Individual Conversion Plans, Medicare eligibility may allow for a reduction in coverage.  Like Frank Lalli, after multiple phone calls to my insurance company, Medicare, and Social Security, I was told by the State Insurance Commissioners Office that the key word was “may.” This was a contractual issue with the individual companies.

Again, after several calls to my insurance company asking the question as many different ways as I could, I seemed to be getting the answer that yes, I could just decline Medicare and stay on the current plan until age 65, even though I was eligible for Medicare now through disability.  According to Medicare, there would likely be a penalty of 10 percent of the premium per year if I decided to go on it later.

The second question was cost.  Which option was more cost effective for me?  Again, this was not simple.

The premiums for the two plans were actually pretty close in cost after including the Medicare supplement and Medicare Part D drug supplement.

Under my current plan, after my deductible and out of pocket maximum of $6,000 is reached, everything is covered at 100 percent and my drugs are all covered with small copays, including high-priced drugs like Revlimid.

For the Medicare plan with the supplement, everything is pretty much covered at 100 percent from the first dollar except the drugs.  This is where it got sticky.  I went on the web site for the Part D supplemental plan, and they actually had a drug cost estimator.  I plugged in the current medications that I am on, including the immunosuppressive drugs I have been using since my donor transplant.  The out-of-pocket cost could be somewhere between $4,700 and $7,200 depending on the plan option.  Just for fun I added Revlimid, which I am not currently on, to the list.  The cost jumped to over $10,000.

So maybe Medicare was not going to turn out to be cheaper, especially if I ended up back on a high-priced oral medication.

The third, and to me the most important, question was which one would provide the best coverage for my needs with the least hassle. This is really complicated because so many things are unknown.  What treatment will I need in the future?  How will they be covered?

I started with what I did know.  My current plan has covered me with minimal hassle through auto transplants, allo transplants, multiple chemo drug regimens that included oral and intravenous drugs and now even Kyprolis ^[5] (carfilzomib).

I started to research Medicare coverage for multiple myeloma and was surprised by some of what I found.  Many of you may already have known this, but I did not realize that Medicare will only cover one stem cell transplant.  Medicare does not cover stem cell storage.  And here is a big one for me: Medicare does not cover donor transplants for multiple myeloma.  So many of the treatments I have had to this point without much trouble from my insurance would have been a big issue with Medicare.

It is difficult to know what impact Obamacare will have on private health insurance.  We do know that Medicare is driven by politics and economics.  While no one knows what will happen with the politics, the economics would dictate that Medicare coverage is not likely to get better over time.

So for me right now, after much hand wringing, I decided to stay with the devil I know, the plan that I am on, rather than switching to Medicare.  I can always switch to Medicare later with a penalty, but I can’t go the other way.  I hope my private insurance doesn’t come back to bite me.

I would love to hear other readers’ experiences with the two options.