Watch and learn about CF topics.
We will talk about the ways that policymakers and payers make decisions about whether or not to reimburse you and about covering your treatments. The system being proposed to state and federal policymakers was put forth by a self-appointed group that uses Quality Adjusted Life Years (QALY). The process for valuing treatments using QALYs puts a lower value on lives lived with a disability or chronic disease. We will give you the information you need to protect yourself, your children and others facing these discriminatory practices. We will also cover the existing civil and disability rights laws that have created precedent against using QALYs in public health programs, as well as threats at the state and federal level for incorporating the use of QALYs.
Let’s gather and unwind together. The pandemic has increased the stress family’s in the Rare Disease community are experiencing.
Please join The Bonnell Foundation: Living with Cystic Fibrosis as we present a gathering on zoom that will help you Manage stress and Promote self-care. We all need some tips on how to do this!
We’re honored to have Kristen Reese, Project Director of the Michigan Family to Family Health Information Center lead the discussion. Reese is a great friend of the rare disease community.