Life with MS

The Financial Reality of Multiple Sclerosis

By Ann Pietrangelo
Americans often boast that the United States offers some of the finest healthcare in the world. While that might be so, the sad truth is that skyrocketing medical costs have made it so that few of us can actually afford to purchase it.
I found out the hard way. I have multiple sclerosis.
The introduction of injectable medications has profoundly altered the prognosis for MS patients like me. Insurance companies call them specialty drugs, but for us they represent the hope that we can stave off further – perhaps permanent – disability. These new drugs are our frontline soldiers in an ongoing battle against our disabilities.
Unfortunately, my story is all too typical. When my MS symptoms first appeared, I held a full-time job that provided me with good insurance. By the time my MS was diagnosed, those symptoms forced me into a part-time job – one with no group insurance coverage.
My doctor prescribed Copaxone®, and I immediately began taking daily injections. Still covered under COBRA, I paid my $400 monthly insurance premium, in addition to a prescription co-pay of $50 a month. While that sounds like a lot, the past year has taught me otherwise.
As my COBRA benefit period ended, I began the search for an individual healthcare policy and found that’s no small feat when your life is branded with the words “pre-existing condition.” It’s ironic that doctors recommend you reduce stress to ward off future MS relapses, because researching insurance while being brushed off by agency representatives will raise your blood pressure.
I learned laws regarding access to healthcare coverage vary from state to state. Some areas – far too few – have a high-risk pool, while far too many have no protection at all for those of us seeking individual health coverage. Other states only require that at least one provider offer  some sort of policy, and put few stipulations on the details. For example, there is no cap on the premiums the companies can charge.
In Virginia, where I live, our limited options resulted in my husband and I purchasing the plan I have now. My monthly premium is $519. Prescription and specialty drugs have a 40 percent co-pay, up to a $500 out-of-pocket cost, in addition to pricey deductibles.
The MS drugs they classify as specialty drugs can cost $1,800 to $3,500 per month. There are no generics. The plan itself is relatively new  – so new that the insurance company and the single pharmacy from which I’m permitted to purchase my Copaxone cannot seem to agree on my monthly out-of-pocket cost.
Each month, there is more stress as the pharmacy wants to charge me the 40 percent co-pay, rather than the $500 out-of-pocket maximum called for under my policy. Unless I fight it, I’m charged as much as $280 more than I should pay. It takes me at least five days (and a load of stress) to straighten out.
In addition to the above costs, my husband also carries individual coverage, bringing our absolute minimum monthly health insurance bills to $1,339. That is for a month that requires no doctor visits, no tests, and no additional prescriptions. When you have MS, there aren’t too many months like that.
There are, of course, assistance programs for those who cannot afford their MS medications, provided that you meet their requirements. We do not. At least, not yet.
The financial effect on our family is devastating. Every decision we make, in every aspect of our lives, must be weighed against ever-mounting medical expenses. At the ages 48 and 52, we still have a long road to retirement. We wonder what the future holds for us and for others like us.
All across this nation, gut-wrenching, and potentially life-and-death medical decisions are being weighed solely on dollars and cents.
We do not expect, nor do we want, a free ride. We simply want what others enjoy. We want options. We want fair and affordable health plans that provide reasonable access to the prescription medications that are our lifeline, our hope. We have, after all, a war to fight. Without our soldiers, our medications, we will lose.
Ann and her husband, Jim, are empty-nesters who currently live in Virginia. Together, they face the reality of life with MS. A freelance blogger and writer, Ann also uses the pseudonym, “Mandy Crest.” You can read her articles at The Health Central Network’s Multiple Sclerosis Central ( and MS Maze (
(Last reviewed 7/2009)