COVID-19: Advocacy

CFRI REQUESTING THAT HEALTH AND HUMAN SERVICES SECRETARY AZAR ISSUE GUIDANCE PROTECTING THE RIGHT OF PEOPLE WITH CYSTIC FIBROSIS AND OTHER DISABILITIES TO RECEIVE TREATMENT DURING THE COVID-19 CRISIS, INCLUDING MECHANICAL VENTILATION. In anticipation of healthcare staffing and resource shortages resulting from the COVID-19 pandemic, some prominent commentators have suggested guidelines for determining which patients should be offered intensive treatment, including rationing on the basis of pre-existing conditions, as has occurred in Italy. CFRI, along with our CF organizational partners, has sent a letter to HHS Secretary Alex Azar and HHS Director Roger Severino requesting that they issue guidance clarifying that denial of treatment must be based on detailed clinical assessment and not merely the presence of a condition increasing the probability of a poor outcome. To read the letter, click here.


CFRI REQUESTING STATE INSURANCE COMMISSIONERS MANDATE THAT INSURERS PERMIT EARLY AND EXTENDED REFILLS IN LIGHT OF COVID-19. The CDC is currently advising people at high risk of complications – including people with chronic illnesses – to obtain and keep on hand a supply of prescription medications in the event that staying at home for prolonged periods of time is necessary. Unfortunately, many payers will not cover refills until 3 to 7 days before a prescription is expected to run out. CFRI, along with its CF organizational partners, is sending letters to state insurance commissioners asking them to follow the lead of California and Washington and mandate that insurers early refill of prescription medications to allow those at greatest risk to shelter in place without fear of running out of key medications. To see the letter, click here.


A Framework for Rationing Ventilators and Critical Care Beds During COVID-19
Douglas B. White, MD, MASBernard Lo, MD
JAMA. Published online March 27, 2020.

A System to Allocate Scarce Ventilators and ICU Beds Gains Traction for Not Counting Any Group Out
Rebecca Robbins
STAT. April 2, 2020.