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Webinar: Discrimination and healthcare
June 10 @ 4:00 pm
Discrimination and healthcare: how it impacts YOU.
When: Jun 10, 2021 04:00 PM Eastern Time (US and Canada)
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.
Register in advance for this webinar:
Laura Bonnell Moderating / Webinar Speakers:
Sara van Geertruyden
Executive Director @Partnership to Improve Patient Care (PIPC)
Sara Traigle van Geertruyden is the Executive Director of the Partnership to Improve Patient Care (PIPC), which is also chaired by former Congressman Tony Coelho, original author of the Americans with Disabilities Act. Sara joined PIPC in January 2011, and also serves as a Partner at the firm Thorn Run Partners. Her work is focused on policies to advance a patient-centered health system, from patient engagement in research to driving outcomes that matter to patients in healthcare payment and delivery. Sara is a healthcare and welfare policy expert with over 25 years of experience, beginning her career on Capitol Hill working for former Senator John Breaux (D-LA) from 1996-2003, then as an attorney at the law firm Patton Boggs where she practiced in the public policy group handling regulatory and legislative issues related to health care, welfare, and appropriations for clients. Sara is currently also serving on the Board of Directors for the Center for Adoption Support and Education
Director @Cystic Fibrosis Advocacy Team, CF Get Loud
Beth Vanstone is a Director with the Cystic Fibrosis Advocacy Team, CF Get Loud. She is the mother of two daughters, the youngest who lives with Cystic Fibrosis. Beth has advocated on behalf of the Rare Disease Community as well as the Cystic Fibrosis Community for the past 19 years. In 2012 her and her then 11 yr old daughter successfully lobbied the Ontario Provincial Government to include the first gene modulator Kalydeco on the provincial formulary. CFGL and CF patients across Canada have been advocating to have recent adverse changes to the Regulatory Patented Medicine Review Board rescinded. She continues to work alongside the Canadian Cystic Fibrosis Community to have Orkambi, expanded labeling for Kalydeco and Trikafta approved and funded in provinces across Canada.