The High Cost of Being Sick in America

This is a cautionary tale. I just happen to have first-hand experience with it; but I know this is only one example.

A couple of weeks ago a blog I follow posted an article about the high cost of disease-modifying therapies (DMT’s) for multiple sclerosis (MS). It confirmed for me that the drugs offered to (some) MS patients are priced exorbitantly and are often too expensive for MS many patients to afford and cited a New York Times editorial on the subject. (Read the comments; they are wonderful. Leftist and wingnut comments are sprinkled in; but for the most part, the outcry against Big Pharma and Big Insurance predominates.)

But, back to my story.

I was diagnosed in 1990 with Relapsing-Remitting MS (RRMS). For the first 3 years after diagnosis, there were no DMT’s available, only medications to manage any exacerbations (or “flare-ups”), of which I had a few. In the summer of 1993, the first DMT, Interferon-β-1b, or Betaseron™, was introduced. During production ramp-up, the company that produced it ran a lottery; when your number came up, you would get the drug. My number didn’t come up until early spring 1994. Then I began a years-long regimen of injections of the highest-cost drug I have ever taken.

Data point: My first months’ worth of Betaseron™ (15 doses), cost about $900. During the early years, the drug company had a plan that after 10 months, the next 2 months was free. I had health insurance through my employer, and the co-pay was very reasonable. (I think it was about $10.)

Fast forward to the “turn of the century.” In the early 2000’s, my insurance company started to use a “specialty pharmacy” to deliver my medication. Along about that time, I began to have visibility into the drug cost because the pharmacy included the cost of the drug in my “invoice.” I was astonished to discover that it was on the north side of $2,000. Per month! I was not surprised that my co-pay went from $10 to about $17, if I recall correctly. And, oh-by-the-way, the number of doses delivered went from 15 to 14.

Fast forward again to the 2010’s. The cost of the medicine slowly climbed, and was a little over $4,000 when the pharmacy stopped putting that information on the invoice. My co-pay also went up again, this time to $150. About 2 years ago I switched to an oral medication (Yay! No more injections!). My co-pay stayed the same. But, I don’t know how much the medication actually costs, because the pharmacy does not include that in the invoice.

A study of DMT’s for MS that was published in the journal “Neurology” indicates that the annual cost of the nine DMT’s on the market today is between $51,247 and $64,233! (By the way, the annual cost of Betaseron™ when it was introduced in 1993 was $11,532.)

The average annual cost of DMT’s at the time of their introduction has risen steadily.

• The drugs introduced in the 1990’s (Betaseron™, 1993; Avonex™, 1996; Copaxone™, 1996) had an average annual cost of $9,516.
• The drugs introduced in the 2000’s (Rebif™, 2002; Tysabri™, 2004; Etavia™, 2009) had an average annual cost of $24,646.
• The drugs introduced in the 2010’s (Gilenya™, 2010; Aubagio™, 2012; Tecfidera™) had an average annual cost of $53,913.

The study in “Neurology” concludes:

“… the unbridled rise in the cost of MS drugs has resulted in large profit margins and the creation of an industry “too big to fail.” It is time for neurologists to begin a national conversation about unsustainable and suffocating drug costs for people with MS — otherwise we are failing our patients and society.”

I can’t help but agree. Some people with MS can’t afford their meds. I know some people for whom this is the case. Profit is good; but excessive profit is not, in my opinion. In all fairness, some drug companies offer prospective customers help with paying for their drug. This is a good thing; but is it also the recognition that the drug is priced too high?

Drug manufacturers bemoan the high cost of developing drugs and bringing them to market and say that the drugs are priced to recoup that cost. Well, at least for my first DMT – which was introduced in 1993, you may recall – they should have recouped their development costs in the intervening 23 years.

Both DMT’s (Betaseron™ and my current one) have been a godsend for me. Since beginning the therapy in 1994 I have not had an exacerbation. This speaks to the benefit of these types of drugs on my type of MS. I’m thankful that I have a health insurance plan that doesn’t cap my total drug costs. Yet.

This is just some food for thought regarding the price of MS therapies. The same price curve might apply for other drugs. Let me know.

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How Apropos – MS Fundraising Week & How You Can Help

How appropriate — nay, apropos (ap·ro·pos/ˌaprəˈpō/) — that this is National Fundraising Week at the National Multiple Sclerosis Society.  And, in that spirit, I’m asking for your help.

As I noted in an earlier post, I’m walking in the MS Walk in Reston, Virginia, on April 15th.  I’m part of the team named “For Uncle Brian,” and am helping them to raise funds to support MS research and programs for people who have MS and their families.

If you can spare a few dollars (yes, every little bit does help), I hope you can make a small donation to our team.  Your donation is secure and tax-deductible.  Just go to this page to donate.

I and those of us with multiple sclerosis greatly appreciate your generosity.

Thank you.

The 2011 MS Walk in Reston, VA Is History

Me at the Finish line

MSWalk/Reston (Virginia) was on Sunday, April 10, 2011.  The morning was cool; but it didn’t deter the some-1,000 registered walkers.

My husband Matt and I arrived about 1 hour after start time (there were staggered starts), hoping that the weather would warm up a bit.  No such luck.  It stayed in the low 50’s (F) the whole time.

The Pavilion was crowded with people.  The “Teams” were assembling and getting rousing send-offs by volunteers.  (Those volunteers also cheered and “high-fived” everyone as they crossed the Finish line.)

We set off from the Reston Town Center Pavilion at about 9:30 a.m. Most of the walk was on the walking/bike  paths in Reston.  It was a side of Reston I never see from the busy streets and shopping areas.

It took us a little over an hour to complete the walk; but the stats I have are a bit skewed because I didn’t pause my phone application when we stopped for water half-way through.  So it might be closer to just under an hour.

After completing the walk we partook in the free brats & chips provided by Clydes.  Mmmmm. (Yeah, they also had hamburgers &  hotdogs; but when there’s brats around the Choice Is Clear.)

I’ve posted some pictures and a post-walk video to Flickr.  Have a look.

I’d really like to thank those of my family and friends who made a pledge on my behalf to the National Multiple Sclerosis Society.  You generous donations go to moving us closer to a world without MS.

I’d also like to thank my husband Matt for walking with me.  There were a ton of people at the Starting line, but I didn’t know any of them.  So I was glad to have Matt to keep me company (and on pace).

I think I’ll do it again next year.  Care to form a team?

Day 5, MS Awareness Week: Walking the Walk

The following is a reprint of an item on my Walk MS Personal Page [link no longer available].  I’m reprinting it here as the final installment of my series of blog posts to mark MS Awareness Week.

“Walking the Walk”

That phrase is taking on new meaning for me this year. This is the first time I will be walking for Walk MS 2011 in Reston. I’d volunteered before, but I wanted to actually walk.
You see, I have MS; and because of the unpredictable nature of the disease, I’ve tried to live by the motto “Do it while you can!” Because there may be a time when I can’t. That is the nature of this unpredictable disease.
So, that’s why I’m walking this year. I hope you can join me or support me by making a donation [secure link]. [last year’s link;  no longer available]

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If you missed the previous 4 posts this week, here are links to them:

• Day 1, Help Me Mark MS Awareness Week
• Day 2, MS Awareness Week: Info About MS
• Day 3, MS Awareness Week: Blogs and More
• Day 4, MS Awareness Week: Ways To Help

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Day 4, MS Awareness Week: Ways to Help

Here’s what I’ve published so far to mark MS Awareness Week:

• Day 1, Help Me Mark MS Awareness Week
• Day 2, MS Awareness Week: Info About MS
• Day 3, MS Awareness Week: Blogs and More

Today I’ll provide you with various ways you can help make this “A World Free of MS.”

The National Multiple Sclerosis Society (NMSS) has a number of its own donation methods:

• Workplace donation/non-government: NMSS is listed in the Community Health Charities of America directory.
• Workplace donation/US Government:  NMSS is listed in the Combined Federal Campaign (CFC).  To donate, select charity # 11409.  Often the local NMSS chapter is listed as well, so you can select them to also receive a contribution from you.
• Fundraising events:  Bike MS, Walk MS, Challenge Walk.  There is something for everyone here.  You can either sign up and get sponsors or sponsor someone who is walking or biking.  (I am walking in the MS walk in Reston, Virginia next month.  See my walk page for more information.)
• The NMSS has more information in its donation pages.

The Multiple Sclerosis Foundation (MSF) has its own set of donation opportunities.  Details are here.

The Myelin Project funds research to find a cure for demyelinating diseases, such as the leukodystrophies, which are genetic and multiple sclerosis, which is acquired.  Their mission statement says it all:”The Myelin Project exists to end human suffering from demyelinating diseases.” Remember the movie “Lorenzo’s Oil“?  Lorenzo Odone was the child in the movie who developed adrenoleukodystrophy, a demyelinating disease.  Sadly, Lorenzo died in 2008; but you can make a difference by donating to the Myelin Project so that more research can be funded.  (CFC #: 11222.The Myelin Project is a 501(c)(3) non-profit organization.)

Day 3, MS Awareness Week: Blogs and More

Here’s what I’ve published so far to mark MS Awareness Week:

• Day 1, Help Me Mark MS Awareness Week
• Day 2, MS Awareness Week: Info About MS

Today I’ll provide you with links to a number of blogs and web sites that have a lot of information about MS.  The blogs are, in general, written by people who have MS.  They give you a unique peek inside life with MS.  I hope you enjoy them.

BLOGS

• Wheelchair Kamikaze – The Rants, Ruminations, and Reflections of a Mad MS Patient.  This blog won the medGadget “Best Patient Blog of 2009.” Interesting, sometimes feisty, always enjoyable. [last post: 3/14/11]
• Multiple Sclerosis Blog – Life With MS Trevis Gleason’s upbeat blog celebrated it’s fifth anniversary this week.  One of my go-to blogs.  [last post: 3/14/11]
• Blindbeard’s Multiple Sclerosis Blog – Ataxia Through Hell This blog has been around since 2007.  Quite personal observations about life with MS.  [last post: 2/13/11]
• Erik’s Multiple Sclerosis & Lyme Blog – My life of symptoms, doctor visits, seemingly endless and massive semi-tax deductible “contribution” to the pharmaceutical industry, and getting better A very good blog. Eric has both MS and Lyme.  This blog has been around since 2004, but I’ve only discovered it recently.  Eric was a prolific poster in past years; but he has not posted since 2010. Hope everything is okay with him.  [last post: 9/12/10]
• Multiple Sclerosis Caregiving – Doing Your Best Does Make It Better This blog is penned by a gentleman whose wife has MS.  If you’re a caregiver for someone who has MS, read this blog.  Even if you’re not, you might find it interesting. [last post: 3/13/11]
• Down the MS Path – A Multiple Sclerosis Blog for Everybody . . . and a few related health issues, too Written by a woman who has had MS for more than 15 years. Some good posts. [last post: 8/22/10]
• Other blogs about MS (Google search)

WEB SITES

• MS My Way – Using Technology To Live Better With Multiple Sclerosis This is a great site that attempts to connect people with MS with the assistive technologies (AT) that might help them.  It addresses AT solutions to vision, cognitive, and dexterity issues that MS patients face.  A fun section called “Brain Games” for some “cognitive exercise.” Test your brain!
• Move Over MS – Changing the Way You Live With MS This site is owned by Accorda Theraputics, which “is dedicated to developing therapies to restore neurological function in people with MS.” There are some good articles on life with MS.
• How Does MS Feel? Site created by a person with MS.  Check the link “So How Do We Feel” to see what MS is like.

MULTIPLE SCLEROSIS ADVOCACY GROUPS

• National Multiple Sclerosis Society Part of their “About the Society” page says:  “MS stops people from moving. We exist to make sure it doesn’t.” Enuf said! Worth a look for just about any type of information about MS you seek. They are also the sponsor for the Walk MS events. (My Walk Page.)
• Multiple Sclerosis Foundation This is another great resource for people with MS, their families, and caregivers for people with MS. They offer some grants for caregivers.

GENERAL INFORMATION WEB SITES

• Multiple Sclerosis Webcasts – MS Treatment News From the American Academy of Science
• Clinical trails involving Multiple Sclerosis
• Google News about multiple sclerosis
• Wikipedia page on multiple sclerosis

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Day 2, MS Awareness Week: Info About MS

I provided a fair amount of information about MS in a post I wrote earlier this year, so I won’t rehash it. But keep reading for more information about MS.

One of the takeaways from that post is the MS is unpredictable through its course as well as in its outcome. Some people with MS may exhibit minimal symptoms, perhaps because of the location and severity of lesions in the brain or other parts of the central nervous system. Others are severely impaired through much of their course of the disease.  Others begin with mild symptoms, but progress to severe disability. There is no way to predict much of anything with MS. (Even whether you’ll “feel good enough” to attend that big social event you’ve been planning.)

“But you look so good!” A variant of this is “But you don’t look sick.” Those of us with milder forms of MS may have heard this more than once when people learn we have MS.  This may be why I felt it would have been more trouble than it was worth to disclose that I had MS.  For the most part, I required no accommodations on the job. (It’s not like I had a job that required manual labor in 95-degree heat.  MS and heat don’t mix well.  There is evidence that raising core body temperature leads to exacerbations or the flare-up of MS symptoms.

According to the National Multiple Sclerosis Society (NMSS), “approximately 400,000 Americans have MS, and every week about 200 people are diagnosed. World-wide, MS affects about 2.5 million people.”  Most people are diagnosed between the ages of 20 and 50, which coincides with primary wage-earning period of their lives.  The diagnosis for some coincides with the time when they are starting families and jobs. (I was diagnosed at age 36; but, as I look back, I had had symptoms some 6 years earlier.)

The diagnosis. Just as the disease is notoriously unpredictable in it’s course it is sometimes difficult to diagnose.  Symptoms can sometimes mimic other diseases and lead physicians to consider other diseases, not MS.  Some patients can go years without a definitive diagnosis.  In my case, I received a diagnosis of “optic neuritis” back when I first exhibited signs of MS. But without other evidence (e.g., nystagmus or an MRI), I was left with the “optic neuritis” diagnosis. (Optic neuritis is often the first symptom of MS for many people.  It’s a classic “entry symptom.”)

So what causes the symptoms? Because MS is an autoimmune disease, the symptoms are caused when the body’s immune system attacks the myelin coating of nerve fibers in the central nervous system. Myelin is destroyed and replaced by scars of hardened “sclerotic” tissue. These sclerotic patches are called “lesions.”

Myelin can be compared to the insulation on electrical wires.  If the insulation is compromised, the transmission of electrical impulses is degraded.  The same goes with myelin. When it is compromised, nerve conduction is impaired.  Anything that is controlled by these nerves can be  affected.  For example, if there are lesions on the speech centers of the brain, a patient’s speech may exhibit symptoms.  The NMSS has more information about myelin, if you’re interested.

Can it be fixed?  A related question: “Can MS be cured?” My layperson’s answer would be that if the myelin can be repaired/replaced, yeah, MS can be cured.  But that’s a big “if.” There is currently research into this. I think this is the holy grail. But right now there are disease modifying drugs [PDF] as well as drugs to treat the symptoms.  But no, there is no cure.

Want more information? The National Multiple Sclerosis Society and Multiple Sclerosis Foundation are two places to start. The Wikipedia page on MS also has quite of bit of information, with 70-some references and some external links for further reading.

TOMORROW: I’ll look at MS from the patient’s point of view. I’ll highlight some blogs and web pages that provide a glimpse into what life with MS is like.  I hope you’ll come back tomorrow to read it.

Help Me Mark MS Awareness Week

As I noted in a previous post, I’ll be marking MS Awareness Week all this week.  It runs March 14-20, 2011.  What you can expect this week:

• I’ll give you some information about multiple sclerosis, the people who have the disease, and groups that are working to improve the lives of those with MS.  I’ll also provide you with ways to get more information about MS.
• I’ll introduce you to some of my favorite blogs by people with MS (PWMS?).  Some of the stories bring into stark relief the trials that PWMS must endure because of the disease and sometimes because of the medical and pharmaceutical communities.  Have a read to peek inside the life of someone with MS.
• I’ll provide you with ways you can help make this A World Free of MS.  There are MS Walks (both long and short), MS bike rides, and MS golf tournaments.  There are also generic ways to donate directly to MS-related groups.
• Also (and don’t say I didn’t warn you), I’ll be asking for your support to help me meet my fund-raising goal for the MS Walk in Reston, VA.

I’m changing my Twitter avatar and Facebook profile picture this week to raise awareness of “all things MS.”

I hope you find my posts this week interesting, informative, and thought provoking. Thank you for reading.

Putting Some Oxygen Back in the Debate

Well, next month it happens:  The MS Walk in Reston, VA on April 10, 2011.  I noted before why I signed up for the walk this year. It’s personal this time. All 3.7 miles of it.

Since I registered, I haven’t heard much about the MS Walk (or “Walk MS,” as the National Multiple Sclerosis Society terms it) on local radio and TV outlets.  What I do hear, however, are ads — ad nauseum, it seems — for the Susan G. Komen 3-day walk.  It seems like that cause is sucking all of the oxygen out of the fund-raising arena.

It’s not that I have anything against the breast cancer cause or the pink-clad marchers. It’s just that they are everywhere: everywhere you turn, every station you listen to, every billboard, everything!  It’s a very well funded organization, and it does a great deal of good.  The case can be made that more women (and men) will be touched by breast cancer than multiple sclerosis [MS]; but that doesn’t mean we — or at least I —  shouldn’t pay attention to the latter disease.

Sure, there have been treatments for the symptoms of MS (spacticity, fatigue) for quite some time.  And in 1994 I was fortunate to begin taking a disease-modifying drug that has likely altered the progression of this disease for me. So far. But there is still no cure.

So I’m walking. Not with a pink ribbon, but with the hope that I don’t trip and fall on the course.  And with the hope that soon we may find a cure.

I told myself that I wouldn’t spam my Twitter Followers and Facebook Friends with pleas to sponsor my walk with a financial contribution so that I can make my fundraising goal.

Yes, I am short of my goal.  And this is a call for help. But I promise you, I will not send many of these pleas.  At least not until much, much later and only if I am way, way below my goal. (Oh yes; and maybe during MS Awareness Week. 😉 )

So, you see, you can keep my “dunning notices” to a minimum by contributing now.  And the way to do that is to visit my MS Walk Page & clicking “Contribute to Michele” — it’s tax deductible! — at the top of the thermometer.

Help make this a world free of MS.

(You can also register to walk and join me at Reston Town Center.)

Why I’m Walking in the MS Walk This Year

The short answer is:  Because I can.  The long answer is much more complicated.

(If you don’t want to read this entire post, let me take this opportunity to ask for your help with sponsoring my walk on April 11th.  Go to my Walk Page, read my story, and donate if you can.  Thank you so much.) [[The links from my personal page last year are no longer available.]

Ready for the Long Answer? (I’ll get back to the short answer just ahead.)

I’ve had multiple sclerosis since 1990.  Not many people outside my family and close friends and associates knew it all those years.  I had a mild form of MS (relapsing/remitting) and experienced few exacerbations over the years.  Because I was relatively symptom free, it was easy for me to not have to disclose the fact that I have MS.

I don’t particularly want to use the word “hide”; but some may think that was what I was doing.  Whatever you want to believe is fine by me.  I prefer “non-disclosure.”

A Short Tutorial

Multiple sclerosis is an autoimmune disease that affects the brain and spinal cord (central nervous system.). There is no known specific cause.  There is no cure.

Part of the definition of MS (provided by the National Multiple Sclerosis Society) includes this statement:

“The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another.”

About 400,000 people in the U.S. have been diagnosed with MS.  Worldwide, it’s thought to affect 2.1 million people.  It’s not contagious or directly inherited.  MS is 2-3 times more common in women than in men. Most are diagnosed between the ages of 20 and 50.  (I was 37 when I was diagnosed; but as I look back, I exhibited some symptoms 7 years earlier.)

That’s One Reason I’m Walking

For a number of years I’ve wanted to walk; but I never did.  A couple of years ago I volunteered to be at the Walk site in Reston assisting with the proceedings (checking people in, handing out T-shirts, cheering walkers as they crossed the Finish Line).  It was a long day and incredibly hot.  Heat and MS don’t mix well.  Becoming overheated can sometimes bring on MS symptoms, if only for a brief period; but I don’t want to take the chance.

I decided that an approximately 2-hour time commitment (walking) would be better than six hours (or more) being at the site.  Plus, I could do a little fundraising [this link from last year is no longer available] as well.

Now, the Short Answer

The reason I’m walking is, literally, “Because I can now.”  The quotation above about the unpredictability of MS is one of the reasons I use the word “now.”  I can walk now (albeit with a couple of falls in the last few years); but, with MS, you’re never sure it will last.  I don’t want to tempt Fate; but I’m enough of a realist to understand that nothing can be taken for granted with this disease.

The unpredictability of the disease is something that is always in the back of my mind.  When I “forget” about it sometimes, maybe that’s when the tingling in my fingers gets a little worse as if to say “Ah ha! And you thought you could forget about it! Well, not so fast chickie.”

Want To Know More About MS?

A great place to start is the National Multiple Sclerosis Society.  They have a wealth of information on their huge site.  A good place to start is with “What we know abut MS” section.  There is also a very good multimedia section on the site.