Help bring the patient perspective to ICER.

The advocacy team at CreakyJoints is looking for a patient with osteoporosis in Los Angeles to speak at an event on June 30, 2017 to encourage Institute for Clinical and Economic Review (ICER) to make new osteoporosis treatments available to patients.

ICER is an organization in the U.S. that evaluates drugs and their cost-effectiveness. ICER’s reports matter because more than half of insurance companies – including Express Scripts and Blue Shield of California – have been known to cite and consult ICER reports when publicly discussing coverage decisions. It’s alarming that there isn’t any statutory oversight, fact-checking and worst of all, transparency within that process.

– ICER was formed with the backing of $430,000 in seed funding from the insurance industry;

– ICER received 77% of its disclosed funding in 2013 from the insurance sector; and

– Eight of the nine directors listed on ICER’s 2014 tax filing previously worked in the insurance industry.

Patient Advocate Criteria

To be a CreakyJoints advocate for this issue on June 30th, the following criteria must apply:

– Diagnosed with osteoporosis

– Taking medication for osteoporosis

– Lives in Los Angeles

– Comfortable with public speaking, but you don’t need to be a professional. Our advocacy team will work closely with you so you’re confident in delivering public comments.

**If you don’t fit the criteria but would like to hear about future advocacy opportunities, become an official CreakyJoints advocate by joining our 50 State Network.

Background

Institute for Clinical and Economic Review (ICER) has produced a report on osteoporosis drugs and costs. The report will be deliberated and discussed at the public meeting on June 30th, where ICER’s California Technology Assessment Forum (CTAF) panel will vote on key questions raised in the reports. A policy roundtable will discuss evidence-based practice and policy recommendations. More information can be found at https://icer-review.org/meeting/osteoporosis/.

Location

The California Endowment Los Angeles Conference Center
1000 N. Alameda St.
Los Angeles, CA, 90012

Sign Up

Submit your information below, and our Patient Advocate & Community Outreach Manager, Sarah, will be in touch with you soon. Thank you for your interest in being a CreakyJoints advocate and making your voice heard.

 

Never advocated before? 

Our patient advocate Chantelle spoke at the rheumatoid arthritis ICER review in March 2017. Click here to read the public comments she gave. After the event, Chantelle shared her experience.

How was the process working with CreakyJoints’ advocacy team?

The process was seamless and very candid. I felt supported by the whole team from our first call to the tweets and texts afterwards. It was empowering for me, as a patient, to have been entrusted with delivering a message to this board that held such gravitas. I’m still elated when I think about it!

What made you want to advocate about this particular issue with ICER?

I have had so many struggles with insurance myself, but I have been able to figure out how to navigate them over time. I felt passionate about this not only for myself, but more for those that don’t know how to advocate for themselves and go months and possibly years without the proper treatment.

What surprised you during the process?

I can say I was more surprised by the info presented at the meeting than I was with anything in the preparation process. I know GHLF/CJ [Global Healthy Living Foundation / CreakyJoints] to be top notch when it comes to their advocates and I had no fear that I would be supported the whole way.

What surprised you about the meeting?

I was surprised by a couple of things. One being how short their research time period was. I’m still learning about RA every day! The slides showing pricing were also a shock – seeing my drug in the top two for cost was sobering. I was also pleasantly surprised that the council was so moved by us patients and other advocates words. That made it totally worth it.

What advice would you give advocates about the process?

I would let them know that it is an incredible privilege and that with the backing of GHLF/CJ [Global Healthy Living Foundation / CreakyJoints] they have zero to worry about. The level of care and respect that I experienced from the team as well as the council was unparalleled. I would encourage others to take advantage of their stories and raise their voices so more people in power can hear us and, hopefully, help us.

For more information, fill out the form above.