Posted by: sistermom1 | August 10, 2010

Can You Say “Insurance”?

I am finally focusing on learning about my insurance. It has been a very hectic time, but I decided that it was time to break it all down into manageable pieces so I could actually know and discuss what is going on with each component of my healthcare coverage.

I have been blessed with access to very good health insurance since I was a child.  My father was a physician, so as a child I often received services under the designation of “professional services”.  For those who don’t know, this was the care often provided to family members of a doctor by his peers – often without charging insurance.  I was spoiled – I had access to wonderful healthcare and never had any difficulty accessing whatever I needed. 

Once I left my parent’s health insurance coverage, I had a huge awakening — things were different, but I still was able to take advantage of the networks developed by my parents, and had a good job, so I continued to get access to great healthcare, and really did not ever think about it.  I was spoiled, and did not even know it.

Now I access excellent healthcare through my spouse.  His employer is an international corporation, with a tremendous number of options on the form that informs you about insurance options for the family.  I never quite appreciated having good insurance until 2005, when I was diagnosed with MS.  I had no clue what the future would be bringing me:

MRIs, blood tests, physical therapy, hip replacement, supplements, clinical trials, FDA emails, meds, infusions, meds, injections, and more meds. 

I am overhelmed by what’s necessary to keep track of everything.  I take it one day at a time — just this week for example, I spent one day speaking with our insurance contact, one day speaking with the folks at Medicare, one day to speak with the pharmacy about the meds I am taking (this function is currently outsourced by the insurance company), one day to speak with the accounts payable department of my physical therapy to discuss insurance policy and coverage, and one day to speak with the pharmaceutical company that makes the latest meds that my docs have prescribed.  I continue to try to pull it all together, and it’s now week two.

This exercise makes me think about the many people who have been pushed into bankruptcy because of medical expenses.  For example, my bill for the infusion of the latest MS meds that I take is a hefty $2000 per month after the deductible.  I am currently unemployed, and cannot yet see a way to make money on my own, due to the tremendous fatigue that I struggle with, as well as the time for daily exercise and stretching and weekly counselling.  Even with insurance, the monthly expenses to maintain a semblance of health is pretty extensive.

My expenses are the most they have ever been, but as they approach the “co-insurance” total amount, I am starting to see the light of 100% coverage for the balance of my expenses through this calendar year.  Exciting, but daunting when I think about how much money we have already spent.

It is truly expensive to be ill in this country.  Current political discussions about healthcare notwithstanding, that reality meant very little to me prior to my diagnosis. Now that I have been thrust completely into this discussion I am not quite sure what to do — or even what I think or how I really feel about it.  I am not naturally a political animal, but this reality has made me much more of one.  How to make a difference in this discussion?  I am not yet sure, but will let you know what steps I do take as the year progresses….



  1. Dear SisterMom1,

    I hear your anguish and I think back just 15 plus years to the development of the first “miracle drug” for MS-Betaseron. For those lucky enough to get into the clinical trials, the “experimental medication” was provided free however after the clincial trials the medication was available only on a “lottery basis” and even getting your name into the lottery process was very difficult and for those lucky enough to get their names submitted into the lottery pool, waiting for your name to be picked was a vertiable crap shoot. Once your name was selected to receive the medication- Betaseron, then came the sticker shock. The medication was NOT covered by medical health insurance because it was still considered ” experminental” and it cost in excess of $ 4,000.00 per month for Betaseron! Many of us quickly went through our life savings to continue to receive this medicine and I believe there was a period of a year maybe a year and a half before medical health insurance moved this medication from the “experimental” classification to the regular medication classification , which allowed us to be able to then use our health insurance to pay for this medicine and hopefully a miracle! Seems like not much has changed since then!

    • Lady Crusader,

      Thanks for your comment.  It is amazing to read your experience, and to see that things remain challenging for all of us with chronic conditions who need access to new meds.  We do need to address this issue through healthcare reform, but totally unsure that it will get addressed in any real way other than removing the “pre-existing conditions” limitation….

      Linda Burke “Let us give something to each person we meet: joy, courage, hope, assurance, philosophy, wisdom, a vision for the future.  Let us always give something.”

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