Anonymous

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.)

Peace.