Living with Scleroderma

As of next Monday, I will be officially on Medicare. Getting there has been long anticipated. But the process has not been easy, as anyone who has gone through it can attest. The plans are complicated, the rules byzantine, the language seemingly designed to confuse (though more likely just written in so many layers that getting to the basic facts is like going on an archeological dig).

To figure this out, Al and I went twice to see a SHINE counselor here in Massachusetts (Serving the Health Information Needs of Everyone—who thinks up these acronyms?) to sort through all the options. I knew from the get-go to avoid Medicare Advantage plans, since these can significantly restrict physician choice through narrow networks. Living with a chronic disease like scleroderma, that was a non-starter for me. We knew we wanted to get a Medicare supplemental plan to cover what Medicare Parts A and B do not. And I needed to be certain that all my expert specialists would be included in the plan.

Fortunately, the best plan we were interested in, offered by Massachusetts Blue Cross/Blue Shield, does cover all of my wonderful physicians. I made sure to check with them as well as with the BC/BS customer service rep. The premium costs about $200 per month, but the plan has no deductible, no copays, and excellent in-patient and skilled nursing coverage. Any provider or hospital that accepts Medicare is covered. Given how much I spent on copays, alone, with employer health insurance coverage, that will be a savings. So that is one load off my mind (at least, unless the plan changes at some point).

The bigger issue has been wading through Part D coverage options for my meds. Learning what’s involved with these plans has been a huge shock. I certainly had read about issues for drug costs for seniors and knew something, in general, about the “donut hole” problem (which I won’t even try to explain here). But I was stunned when I realized how much I would be paying for some of my medications: one Tier 5, and four Tier 4s (or two Tier 4s and two Tier 3s, depending on the plan).

Even with the excellent help of staff at the Massachusetts College of Pharmacy and Health Sciences (MCPHS), which offers a free service to state residents to sort through all the Part D plans, I learned that we would be paying about $10,000 annually. And that includes falling into the catastrophic coverage category. This prompted me to bring up the issue to both my Boston Medical rheumatologist and cardiologist. So we are now reevaluating my meds and alternatives. We’ve come up with a new plan that will cost about $,4,500 annually—certainly an improvement, but still three times our out-of-pocket expenses under our prior insurance.

One could argue that this is appropriate. Shouldn’t we all be making cost-conscious consumer decisions for our health care? Problem is, the cost of my Tier 5 medication is exorbitant. It’s been covered by a patent for years, and is going off patent later this year. As a result (I learned from the Part D Medicare web interface), its negotiated monthly cost, which forms the basis of what is paid by the patient and Part D, has increased more than 100 percent in the past few years, from around $5,000 up to more than $11,000. That’s monthly. The drug isn’t costing more to make. The pharmaceutical company is milking the patent  before it expires and a generic becomes available—which could still be costly. As my cardiologist noted, if they find another, slightly modified application, the patent could still be renewed. This is common practice.

One way or another, we’ll make it work. But it is high time that the high cost of drugs in this country, especially for seniors who cannot afford them, should be regulated. All it takes is one look at a Canadian drug website to know that what we’re paying is ridiculous.

For more than a year, Al and I have been paying a hefty COBRA premium to retain our excellent health insurance, which I really need or we’d go bankrupt. We’ve been waiting and waiting until my 65th birthday to drop that expense for a much more reasonable monthly premium (Al switches over in July). But it’s still not clear to me, given the drug situation, how much we will save. And this makes me angry.

There are other countries on this planet that make comprehensive health care available for all of their citizens. Let’s get past all the scare mongering, clarify and understand the true costs, and seriously consider universal health care here in the U.S. What we have now is just a confusing, inequitable mess.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

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