Thursday, January 17, 2008

The value of money or the value of health - What do you see?

What does money look like to someone with multiple sclerosis?

This is what $7000 looks like to me....120 pre-filled syringes...120 mL.
Four months worth of daily self-injectable medication.

One syringe = 1 mL
120 mL = 4 ounces
1 ounce = $1750

But it won't pay the bills nor would it pay for an Italian vacation. You might look at it like an investment in future health and mobility. Put the money in now and hopefully reap the benefits later if all goes well.

This is what $7000 looks like to most people....$7000.

It could be used to pay the mortgage, to purchase a new french horn, or to provide for that Italian vacation. But for someone with multiple sclerosis, it likely goes to pay for out-of-pocket healthcare expenses.

Although I have a private, individual health insurance policy with a major carrier in the Washington, D.C. area, I still have to pay this $21,000 annual expense for a single medication designed to slow-down the MS disease progression. It might work, it might not work. I can only hope it does.

My insurance premiums now cost approximately $3500 each year, but the company still will not cover my medication in full. It will payout $1500 each year for medication, but the rest is my cost.

But what if you don't earn enough money to be able to spend an extra $21,000 each and every year in the hopes of avoiding some level of disability in the future?

Well, the patient contact organization created by the pharmaceutical company (in this case Shared Solutions) refers your case to their benefits investigation team. This team will also run a quick search for government programs in your area for which you might qualify.

What if your state or locality does not have a pharmaceutical program which will cover this medication?

Then your case is referred to the National Organization of Rare Disorders, Inc. (NORD) who administers the prescription assistance program for Copaxone/Teva.

What kind of information does NORD require?

Recent paystubs, federal tax return, 3 months of bank and investment statements, and a signed application form verifying assets, income, and expenses. If you are not single, all of the above information is also needed regarding your spouse.

What does it take to qualify for help in paying $21,000?

Well, what I do know is that with an income of $27,000, a single 37-year old female with some money in retirement and savings might qualify for a 25% award equal to 3 months of medication provided by NORD.

When that same single female, at age 38, earns an income of $19,400 (less than 200% federal poverty level), she discovers the magic threshold at which NORD will provide 100% of the $21,000 medication.

Ironically, today as I have prescription costs on my mind, I received the reapplication form from NORD. Within the letter accompanying the application, NORD reminds us -

"As the Program is one of last resort, we must remind you that continued participation in the program is not guaranteed. Also, allotments awarded may vary from year to year as they are based on dosage, financial need, and the relative size of the Program itself."

Nothing is guaranteed...and each year this now 39-year old female must submit all her financial information for evaluation.

How truly needy is she and how deserving of a helping hand?

It's a numbers game really. As a self-employed person, even I don't know exactly what I've earned until I sit down at year end and calculate all deposits and all expenses. But I did calculate once that I would need to gross an additional $30,000 to be able to pay the $21,000 (plus increased taxes and SEP contribution) and maintain the same take-home pay.

Anyway you look at it, that $7000 worth of medication is an expensive forfeiture of $10,000 earning power and the future financial security that the $10K might provide. I feel as though I have to give up alot in order to gain some hope of slowing this MonSter down.

How do you view your medication?


  1. Lisa

    Excellent post! The photos speak volumes! This subject is near and dear to my own heart. We've got to keep speaking up so that others out there understand that we're not talking about nickels and dimes when we speak of the health care "crisis". For more on this topic, read this post from my husband (link below). Thanks for a job well done!

  2. Lisa, this makes me sick. It makes my stomach turn. The photos are so powerful. The other day I accidentally didn't close my autoinjector before pulling off the cap that covers the needle. The medication went all over the bathroom. I just about cried. I know how much it costs. Sure, I only pay a monthly co-pay, but I'm intimately aware of how others can't afford their meds. And, I wasted a perfectly good syringe. I'm going to write something up on Sunshine and Moonlight to direct people here. Wow.


  3. this is one powerful post. the images make such an impact. it is just beyond reason that so many people have to worry about getting the medications that they need. i am not sure what the answer is.

    i feel are preaching to the there a way you can let people who are in power know about all this?

  4. Mandy: Thanks, I did visit your hubby's blog and left a little comment. Certainly, the healthcare "crisis" is not simply about health insurance, it's about social economics on a greater scale. IMHO.

  5. Kim: I found myself laughing at the image of the syringe squirting all over the bathroom. On one recent morning, I accidentally flipped a syringe from my clumsy fingers just as I was getting ready to inject manually. The needle fell to the bathroom floor a mere 2 feet from my aging cat's litter box, not really a sterile area by far. My immediate actions surprised me.

    I quickly picked up the syringe (uncapped already) and grabbed an alcohol swab to clean it off. I squirted a little med out just to be safe. I then used the swab to clean the needle, finding that the bent tip snagged the alcohol swab.

    Common sense did not bring me back to sanity just yet. I carefully wiped the syringe so that no cotton fuzz was left on the tip. And guess what?... I actually attempted to gently insert the needle with the bent tip and all.

    When the needle did not easily cut through the skin, I finally said to myself.... WHAT ARE YOU DOING? Finally, sense returned and I sent the precious medicine down the bathroom sink. Then I many people would voluntarily flush the value of a typical gift card right down the pipes?

    Fortunately, avoiding greater than usual injection pain and possible really nasty infection was worth more to me that day than what the med costs. To use your term I.A.R.

  6. Merelyme: I'm so glad you stopped by. In a way, my frustration from personal experiences in dealing with the cost issue of these meds is what has ultimately led to this blog. It certainly has been a long journey, one which perhaps I should share someday.

    I believe I may be a patient advocate in the making. Certainly, I'm a learning sponge as health policy goes. Too often I read opinions from those who are so entrenched in their political views and who view individuals experiencing financial challenges as freeloaders and welfarers.

    One thing that frustrated me at first was that even the MS "experts" at the various societies and foundations were helpless and had less knowledge of the actual programs and limitations than I discovered. But then again, I'm persistent, intelligent, and not one to give up easily.

    I think a way to frame the message in a powerfully effective way is perculating in my mind. I live only a few miles from the Nation's Capitol and could probably find folks who know folks who could put me in front of the appropriate people. For now, the ideas are still bouncing around in my head (and on this blog.)

  7. Lisa,

    I referenced this post on MS Maze in a call to action from our on-line MS community. We really need to be heard on this issue.


  8. Lisa,

    I was directed here by an email from MandyCane (Mandy Crest)...I will be linking this post and also the one on her hubby's blog via BRAINCHEESE.

    Your words are very are you.

    Linda D. in Seattle

  9. Hello,

    you sonud like someone who is NOT resigned to MS.

    Good for you. I'm not resigbned to it either.

    I loved the blog post. (Where did you ever find $7,000 to put into your picture. That's got to be photoshopped or at least photocopied)

    You and I see eye to eye on various things that are, inadequate, about our medical system.

    I would love to interview you for my podcast [at: (think of it as radio for the web.)]

  10. The approach I am taking to treat (rather than possibly stop progression of) my MS (MS - Mystery Solved for me) is costing considerably less than $21,000 per year and I have the benefit of feeling and looking healthier than I have in many years (see this explanatory link for an Oct 07 talk given by a scientist to an MS society in Alberta....

    Your entry made me very grateful that I don't have an annual $21,000 pressure in my life nor do I want it.

    It is so interesting to see the choices people with MS make.

    To make a diet change, like I have, is not well respected for the most part - most definitely not by my local MS society nor most of the medical community in my city. I know, for myself, that my diet changes have reduced my symptoms and that is all that really counts in the end eh? Patient advocacy is a mute point when it comes to patients choosing diet modifications.

    Namaste to you and thank-you for making me grateful for my own choice since I will feel like I'm saving everytime I buy fresh quality food (which is often more expensive than prepared foods)!.

  11. hi, i spent years working for avonex- i know that if one of our customers had a problem with an injection (dropped it, mixed it incorrectly, etc) they could simply call us (the manufacturer) and we would send a free replacement right away. i'd hope that copaxone has the same service...

  12. interesting post , when my wife was first diagnosed with MS one of our concerns that jumped up and worried us was the potential cost , and nobody seemed to be willing to talk about it.

    My wife has insurance through her job and we did not know how much the co-pay would be untill the actual script was filled . we are lucky and the co-pay was less than $1,000 per year .

    We like our life here on our little farm with our animals but the diagnosis of MS was enough for me to think about taking callie and I back to the UK where healthcare is free ( not free ) but funded by National Insurance deductions on every ones wages, I do wonder at the morality of a society that requires significant wealth or needing to beg for the drugs to treat a disease with the power to cripple

    Callies Husband steve

  13. Hi Lisa:

    I haven't had time yet to read all your past posts - what a great blog you have here! However, I do wonder why you personally chose to use Copaxone. It seems you are well informed and I wonder what made you choose this DMD. If you have time and can tell me your experiences with it I would appreciate it!

    You can leave a comment on my blog or email me at