Yesterday I received an email from Children’s that since the FDA passed the new med on October 21st – some patients have actually received the new drug.

They have a system in place – thank goodness and they are writing out scripts to patients who are seen in clinic and then the patients who have been seen recently.

If you haven’t been seen in 3-months, you have to make an appointment before they will write a script. That makes sense because they have to know how you are doing first hand.

They have increased the number of people working on the prior auth’s, denials, and medical necessity paperwork, awesome.

What is so wonderful about this email is I don’t have to reach out to them. I have a feeling they will or the pharmacy will be reaching out to me.

Vertex actually has an amazing patient support team/process. I have a person who I work with directly. They have organized calendars for patients for when new scripts and new prior auths have to be written and processed a month or two in advanced of the prescription expiration.

One time I spoke to my person (I’m forgetting their handy dandy title, maybe care specialist?); well she referenced her calendar or excel spread sheet or something the exact days she reaches out either to my provider and pharmacy, sometimes monthly. It was all extremely organized. She said when my script expired before I had a chance to say it.

In the email, they also emphasize it may take several weeks to get the med because of prior auths, push back, appeals, and denials – or not, you never know.

On that note – sigh. I have been listening to the “On being” podcast recently. They are short 7-minute podcasts which are nice at times.

One such episode is called “Happiness as practice, not pleasure.” – Matthieu Ricard

It went something like this –

Happiness has to be learned and cultivated. We need to sit for 20 minutes a day – if you can and cultivate compassion.

Our mind will change, our brain will change, what we are will change.

Those are skills that need to be cultivated.

If we want to learn chess, we practice.

If we want to play basketball, we practice.

Do you learn to play the the piano 20 seconds every two weeks?

It simply doesn’t work.

Why is it such a mystery that just because you wish to be happy – it just exists. You practice, actualize it – cultivate compassion.

They should put something about practice and patience as well, always a tough one.

That is about all my brain can muster, and the fact I believe I know what empirical means. I have only had to look it up every time my prof has said it.

Oh, ephemeral and etymology too. I always have to remind myself, but I think they are getting in there. One would think I could at least remember the last one. All e words. Interesting.

Much love and good thoughts for today, tomorrow, and the next. Sigh.