One of the best feelings in the world, where my stress from my shoulders drop to my feet and out my toes is when all issues are resolved and my medications are on their way.  I woke up and made a couple phone calls.

Not getting my medications is exhausting beyond words.

Fighting for them boggles my mind – why does this have to be?

Vertex pharmaceuticals is actually doing the right thing with their medications. They know it costs money and a lot of money. They created a copay assistance program that dropped my copay per month from $125 to $15.

Creon – which is the company that provides my enzymes. They created a program that dropped my $50 monthly copay to $0.

Both of these programs do not require you to submit income information.

The company that creates Cayston – this medication I have struggled to get. It is an expensive medication and they know people’s copays will be high – but they decided to create a program that you have to submit your income only.  They did not do what these other companies have done. I don’t qualify and therefore must cough up the $125 and when this little machine crashes I will have to pay the full $900.

There are ways to take care of patients.

There are ways to make a profit and still care for the patients who essentially take care of you. It goes both ways.

What we must do and continue to do is speak up. I will say right on the phone and call them out.

Speaking up does create change. You cannot be bullied and just accept this is the way things are. It took years to get a copay assistance program for Creon – but eventually, the squeaky wheel did it. And there are a lot more assistance programs than there ever was.

The people who really have loud voices are all those mothers out there taking care of their little ones. When I read their comments – man that is a tough population. Their anger is nothing but their love and it comes from their core.

Fists up and ready to riot. They riot through letters, phone calls, and marching up those state legislator steps. I have seen it and I read it.

Don’t piss off the mothers.

They unite and they talk.

All the moms and dads need our support. Rally around and for them.

Getting my medications is the best thing in the world. If you are ever looking for me and can’t find me, I will be in my bunker with my drugs.

Thank you for reading. Much love.