CCHF has asked Senate Appropriations leadership to delete the language
ST. PAUL, Minn. — Citizens’ Council for Health Freedom (CCHF) is raising concerns about language in the federal appropriations bill (H.R. 7148), now waiting on the floor of the U.S. Senate. The provision encourages organ procurement organizations to be given remote access to the electronic medical records of potential organ donors.
Section 6502 of the bill amends Section 372 of the Public Health Service Act to encourage:
- Integration of electronic health record systems through application programming interfaces (API) among hospitals, organ procurement organizations, and transplant centers
- Automated electronic hospital referrals
- Remote, electronic access to hospital electronic health records of potential donors by organ procurement organizations
“This troubling provision allows organ procurement organizations to become unseen watchers at the bedside of potential donors,” said Twila Brase, RN, PHN, co-founder and president of CCHF. “Given that HIPAA is a disclosure rule, not a privacy rule, the requirement that remote access to the electronic health records of potential donors follow HIPAA provides no comfort.
Brase says this language increases institutional focus on organ retrieval rather than patient privacy and family autonomy. The language, she says, is a boon to the organ procurement business, estimated to be a $21.5 billion per year global industry by 2032, per Yahoo Finance. CCHF warns the changes could intensify pressure on families during end-of-life situations by systematizing rapid electronic identification and referral of potential donors.
“When the system is built to flag patients, automate the transmission of medical status, and allow self-interested corporations to track the progress of patients who may die, patient and family interests may become secondary,” Brase said. “Families deserve space, clarity, and control — not a technology-enabled pipeline that treats struggling and dying patients as data points in a donor procurement network.”
CCHF is asking Senate Appropriations Chair Susan Collins (R-ME) and Vice Chair Patty Murray to delete the language from the appropriations bill and is calling on all members of the U.S. Senate to refuse to support the bill if this language is not deleted. CCHF also urges Congress to restore the privacy rights patients had before HIPAA.
For more information or to schedule an interview with Twila Brase, contact Alexandra de Scheel at media@cchfreedom.org.
# # #
About Citizens’ Council for Health Freedom:
Since 1998, CCHF has existed to protect patient and doctor freedom. As a national, independent, non-partisan, non-profit health freedom organization, CCHF maintains a patient-centered, privacy-focused, free-market perspective. For more information, visit: www.cchfreedom.org.
