Tuesday, June 25, 2013

Downside Up

All I can say is wow.  It has been 3 years since I have had to be on steroids for an MS attack.  Wow.  For 3 years I have been able to wake up each day and get up, even though each day I sit on the edge of my bed, wondering, before rising, if my leg muscles will work.  For 3 years I have continued to improve on the medication called Ampyra.  In those 3 years, my world has been turned "downside up," meaning life has become so much better, manageable, possible, less overwhelming, amazing, wonderful, and the list could go on.  It hasn't been easy - what I have never is.  It doesn't make any sense - other therapies haven't worked, have caused allergic reactions, have had side effects - and this medication comes along and works - and then neurologists say an MS diagnosis doesn't really fit me - and on and on - and I try to make sense of what does not seem to make sense to so many - including me - the impossible as possible - downside up.

Today I woke up, sat on the edge of the bed and wondered, would my legs work?  And they did - I never take it for granted.

This past Sunday the gospel lesson was Luke 8: 26-39.  The main point of this lesson is something about swine being drowned and the loss of bacon.  :)  No, that's just to make you go look up the text if you want.

The text is about a man who has demons inside of him, or he had some kind of mental disease, which Jesus cured.  When people came to see this, "they were afraid."  As the sermon in our church went, one can imagine why these people were afraid, because they had treated the man badly; would the man now remember how they had treated him?

That text isn't about me; I'm not a pastor and have no religious "authority" to explain it.  That's my disclaimer statement.  But it's kind of a "fun"text to use when I substitute me.  It's my blog - the beauty of it, if you want to call it beauty, is doing whatever I want with it.

A woman (that would be me) had a disease for a long time and it kept taking away abilities of hers, so much so that she didn't even realize some of the many abilities she had lost, because she learned to compensate. Others mainly treated her very well, although a few questioned, without basis, her mental abilities. 

Then a miracle drug came along and within 2 days of taking it, the woman was standing for longer than she had in years.  Many people were happy for her and noticed many of the abilities she found again.  She continued to improve and to this day, does not know how much further she can improve. 

In a way, this woman feels like, perhaps, the man from the gospel text must have felt.  She was not put away by herself, although at many times she felt alone and put away by herself, because that can be the inherent nature of disability.

As she got better, it was very exciting for her. 

The gospel text leaves out what happens to the man next?  How did people treat him?  Did he remember how they had treated him?

The woman (me) of course didn't forget how people treated her - both good and bad.  Her world was turned downside up... things are so much better.  The same people who were supportive before she began the new medicine were supportive after she started the medicine.  The people who were not supportive before the medicine?  Well, to be honest, they still weren't supportive.  Ampyra, the "Jesus" medicine if you really stretched things (which I'm not trying to do) really helped equip her to deal with these people.  Only once did they run her down to the point where she questioned why she was being targeted, she questioned how she could hold everything together, and she did get sick, though did not have an MS attack.

So the man in the gospel?  My bet is he still had to deal with at least a fraction of people who tormented prior to him being cured.  This is human nature.

But the point is also not to dwell on these things.  The point is to move forward.  The woman continued to move forward.  She recovered from the sickness, rested, and did not have an MS attack.  She maintains friendships with the people who were always supportive.  She has, at least for now, rid herself of those who never supported her. 

And so I continue to move on.  I'm starting new physical therapy tomorrow.  I have goals.  The goals get harder, but I want to meet them.

I'm celebrating 3 years of being able to stand today.  It's a gift.  Thanks to God for the miracles in life we don't see coming, that don't make any sense, and that turn our worlds downside-up.


Sunday, June 9, 2013


For many years now,  I have followed what people have to say about specialty drugs - they're the ones that hit the news - the ones taken by people with things like MS, almost as if MS is a choice disease, as if people think there's an alternative to anything that can help.  They are, simply put, expensive.  That's why they tend to hit the news.  Ampyra is a relatively cheaper drug.

("Hey Mom, do you realize I've been standing against the island in the kitchen for 15 minutes now?  That's strange.  Think it could be Ampyra?  It's only been 2 days, but I never stood here after work like this.")

Specialty drugs are expensive - a few cost over $50k.  There are specialty drugs for many other diseases besides MS, and the drugs for the other diseases are expensive as well.  Typically, specialty drugs are used to slow the progression of diseases - diseases that are not very common, relative to diseases like diabetes and asthma.  So although specialty drugs impact the healthcare system, they aren't the most major thing driving expense, since relatively "few" people have the diseases and not all people with those diseases take the specialty drugs.

(Well, here I am after 4 months of Ampyra, at the track.  I don't remember a track being this big, but I walked around it, which took an hour, but I couldn't walk this far before Ampyra.  Who knew life with MS could get better?)

Yet insurance companies have found ways to charge, say, $250 per month supply, or the new thing is 25%, for these specialty drugs.  I wonder, let's see, how much do people really want these drugs / how much can people really afford for these?  If we charge enough, perhaps people will go off them, and then what?  That's what people are discussing... well, people who are not on the medications, or know someone who is on one.  The other group is talking a bit differently, about how they need these medications and it's not their choice.

("So, I need my prescription filled by Friday.  That's when I run out.  Should I go check into the hospital if you can't get this medication to me?"  That was me, with a new insurance company, who fought covering the drug, even though it has been approved by the FDA, and even though they cover Viagra, etc.  I've been on Ampyra for almost 3 years.  I am much better in so many ways.  I just feel better.  If I stop taking it, I will crash.  This won't happen to everyone and you can't place a monetary value on it.  It's quality of life.  For anyone reading this, how much do you value what you are able to do?  Can you put a dollar amount on the ability to hold a pen, to write?  Can you put a dollar amount to the ability to get up every morning?  Can you?  How much is it worth?)

Physicians tell patients that patients with things like MS must be on one of the specialty (expensive) drugs.  Insurers, at a minimum, say patients need a pre-authorization from their provider to be on them.  Then insurers may have other requirements as well, which to me seems like insurers are trying to also play the role of provider, which I believe is wrong.  To this end, insurers have created tiers of drugs, which is how much patients pay.  The patient contribution has increased and is often $250 or 25% per month.  When this first happened, the new contributions were in fine print so when patients came to pick up their normally $20 medication, they were shocked.  Always read that fine print!

(Let me think...  do I want to walk?  Yes, I want to walk!  That $250 or 25% is just cruel.  Quite honestly, I live a very healthy lifestyle.  I don't have risk factors that seem responsible for some other diseases.  So, I don't get it.  It's not like this is my fault, or I could have done something differently to avoid it all.)

The media has a significant role.  They report that wow, new drugs are available!  Then the media reports that wow, the new drugs are expensive!  Various people, insurers, policy types, ...,  then start to voice questions on if specialty drugs are worth the cost... why do drug companies charge so much...  So there are all these people - physicians, drug manufacturers, insurance companies, policy people, all discussing this...  They can be in so many places doing this.  It is assumed, it seems, that during these talks, the main "player" is missing, and no one notices the missing "player."

So what about that missing "player?"  That would be (weird drum roll), the patient!  While everyone has been discussing the specialty drugs, the patients have been listening (often in the same room where it is assumed no one is on a specialty medication - can you say awkward?!!).  Patients are stuck.  Patients weigh information, and are stuck in a game where providers say they must, insurers say ok but we want $250 or more, and different people ask about outcomes.  Patients just want the best quality of life they can have for as long as possible.  Ideas on how to measure quality of life for as long as possible in actual dollars? 

(I think the media ought to run a story where they interview patients on being stuck, rather than on cheering for the new drugs and then giving their prices in a different story.)

Criticism is often targeted toward drug manufacturers...  why do they charge so much?  I do wonder the same thing.  But insurance companies?  Seems a way like the game "chicken," where 2 people head straight toward each other to see who will move first.  Are the drug companies going to budge?  No.  Are the insurance companies going to budge?  No.  The people taking these drugs are left right in the middle.  People will say they don't mean anything against the people taking the drugs, but that's pathetic with this "chicken" game happening.  So I'm going out on a limb and saying people taking specialty drugs are caught in the middle, forced to make difficult decisions they shouldn't have to make, and feeling like there is some kind of target on them.

(I've been on Ampyra almost 3 years now and I don't plan on stopping it.  I feel good.  It's summer and hot, but things could be worse.  I may have to speak up at some point, in a situation that already feels awkward.  Some day, feelings of frustration are just going to come out.  And then, I will no longer be anonymous in the room where people assume no one in the room is on one of the specialty medications.)