Every large pharmaceutical company has some sort of patient support program.  Most help low income patients gain access to their drugs, usually by providing free or discounted product.

Last December at the American Society of Hematology (ASH) meetings in San Diego, several patients and staffers from the IMF were invited to a lunch meeting, hosted by Onyx Pharmaceuticals, manufacturers of carilzomib.  I was fortunate to be one of them.

I asked a lot of questions and took a lot of notes.  But toward the end of the meeting, I was asked not to post an article about what I had learned that day.  “Could you please wait until after carfilzomib was approved?” a concerned Onyx representative asked.

I reluctantly agreed.  But reflecting back, caution while a drug like this is under FDA review was probably the prudent thing to do.

But now, carfilzomib has been given a new name, Kyoprolis–and it’s been approved by the FDA.  So I thought I would share what I wrote that day with you now.  I think it provides some important insight into the direction Onyx wants to take it’s patient support program:

Sneak preview of Onyx Pharmaceuticals’ Patient Access and Support Program

December – 2012 – San Diego

In anticipation of FDA approval in the near future, Onyx Pharmaceuticals is in the process of developing a Patient Access and Support Program.

Sunday I attended a lunch meeting at the Omni Hotel, located across the road from the San Diego Convention Center.

I was one of a eight patients in attendance.  The meeting was scheduled to allow the Onyx staff to get patient feedback as they finalize program guidelines.

The goal of their new Patient Access and Support Program is to not only to provide financial assistance to help pay for carfilzomib for patients in need, but to assist patients in managing their multiple myeloma.

Jennifer Sharretts outlined an innovative patient assistance model, featuring emotional and social support services and aid for transportation and logistic services.

Apparently the plan is for Onyx to donate substantial resources to existing patient assistance organizations while they launch their program.

I have always felt that Celgene operates a model patient assistance program.  Called Celgene Patient Support, Celgene’s financial counselors work with patients to help pay for Thalomid and/or Revlimid if they can’t afford it.

If you think about it, it made sense for Celgene to be out-in-front of this issue.  Drugs like Velcade–and maybe carfilzomib someday–that are given by IV are generally covered by Medicare and most all private insurance carriers.   But since both of their myeloma drugs are administered orally, there have historically been problems getting insurance companies to cover the cost.

That’s what impresses me about Onyx’s plans for their patient support program.  Since carfilzomib is administered by IV in a doctor’s office or cancer center, Onyx probably doesn’t  even need to be starting a program like this.

But instead, I’m listening to a group of young, enthusiastic Onyx staffers, brainstorming with us about ways they might be able to help patients better live with their cancer.

I’ve got to tell you, I’m impressed!  Now I just hope carfilzomib is approved sometime next year.  Myeloma patients need all the help we can get!

Feel good and keep smiling!  Pat

Well, carfilzomib has been approved, and those young Onyx staffers that I wrote about have already rolled-out their new program.  It’s called Onyx 360.

The program will be up and running before Kyprolis is available to hematologists and oncologists later this month.

In a multiple myeloma patient’s world where every second counts, I think that’s pretty special, don’t you?

I will pass-along some specifics about the program–including a follow-up interview that I hope to do with Jennifer–later this week.

Feel good and keep smiling!  Pat