Ensuring Access through Collaborative Health (EACH) & the Patient Inclusion Council (PIC) Coalitions

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The inclusion of Medicare drug negotiation in the Inflation Reduction Act made a historic change to Medicare coverage that could have broad and significant consequences for patients. Further, it established a foothold for affordability review policies that legislators at both the state and federal levels are expanding across broad health coverage markets and programs.

Unfortunately, we have observed the stark reality that as these policies are debated, the voices of patients and Patient Organizations (POs), the ones with the most to lose when these policies are implemented, have been minimized during the process. Additionally, patients are asked to participate in later stages and at short notice, so finding individuals to share their voice has been challenging. Other issues have also been identified - such as surveys and discussion questions intended to involve patients, yet the design will produce biased or faulty responses.

Our intent is to set-up structures that ensure Patient Organizations (POs), patients/care partners, and other patient-supporting affiliated groups are involved in affordability review activities through all phases, including during the process development. Through this national network, we aim to be a primary resource of information to help others navigate the space and connect to opportunities to make impact.

EACH and the second tiered PIC are open to any disease group who is affected by affordability reviews. This is NOT Autoimmune Arthritis/Autoinflammatory Arthritis (AiArthritis) disease specific.

OBJECTIVES

Unite POs and other patient-supporting groups to ensure our voices our counted to ensure affordability review processes do not impact access to therapies, cost savings are passed along to patients, and that innovation is not compromised.
Foster information sharing and group engagement on the federal and state levels.
Educate patients to learn about affordability reviews and their potential impact on their treatments, as well as empower them to get involved quickly and as able.

Our EACH Coalition and PIC meetings take place monthly. Patient-led education about affordability reviews, began in early February. If you are interested in being involved, please complete the form below.

Thank you!

First Name *

Last Name *

Email *

City *

State/Province *

Country *

I would like to be involved in the following group(s): *

EACH Coalition (for organizations)

PIC (Patient Inclusion Council)

Both

Required

For those interested in joining the EACH coalition, you must be affiliated with a Patient Organization or association. What is the name of your associated group or coalition? (If you are interested as a patient, please skip to the next question. If you are BOTH affiliated with a group AND a patient, you may complete both).

If you are affiliated with an organization/group, what is your website?

For those diagnosed with a condition whose treatments are or might be up for affordability review, and thus are interested in learning more how to get involved, please tell us more about your connection to the diagnosis. Choose all that apply.

I am diagnosed with a condition and my treatment is or might be part of affordability reviews.

I am the care partner for a person diagnosed.

Other:

Is there anything else you'd like to add?

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