Tucked inside the 1,059-page appropriations bill President Donald Trump signed into law on February 5, 2026, is a provision allowing organ procurement organizations (OPOs) to have “remote electronic access” to the medical records of “potential” organ donors.
The health reform advocacy group, the Citizens’ Council for Health Freedom (CCHF), discovered the language on about the 900th page in H.R. 7148 and issued an “alert” on January 27, 2026.
“This provision will likely increase institutional focus on organ retrieval rather than patient privacy and family autonomy,” the alert stated. “Further, the language could intensify pressure on families during end-of-life situations by automating electronic identification and referral of potential donors, eliminating a discussion between patients, families, nurses, and doctors about whether to notify an organ procurement organization.”
Buried in the Bill
It is not surprising that legislators added the language to the bill, which passed in the House on February 3, 2026, by a three-vote margin and in the Senate on January 30 with 71 votes. Still, lawmakers may be surprised it was discovered, says Twila Brase, R.N., PHN, CCHG president, and co-founder.
“Appropriation bills can be useful avenues for passing controversial legislation because these bills must pass to keep the government functioning, so they are often chock full of spending on a variety of items,” Brase told Health Care News.
“We are uncertain where the impetus of the OPO language came from, however, Senator Grassley and others had this kind of language in other bills,” said Brase. “It is possible, since the language only encourages, and does not require, integration and unconsented remote access to the medical records of those who are fighting for life, that the OPOs asked for this language to secure information on dying patients more rapidly.”
REAL ID Act Example
Brase says an example of stuffing controversial provisions into big-spending bills came in 2005, after the REAL ID Act failed to pass in the House. The law requires states to meet federal security standards when issuing I.Ds.
“So, in 2005, Senate leadership added the REAL ID Act language to a ‘must pass’ emergency defense spending bill to fund wars in Iraq and Afghanistan and for tsunami relief,” said Brase. “Although the REAL ID Act is controversial for many reasons, it was adopted without public debate and without a hearing in the U.S. Senate.”
The REAL ID Act, in essence, established a national I.D. system.
“It fully imposed and digitized along with the national facial recognition system it is building, it will put the federal government in charge of all life, all movement, transaction, and access,” said Brase.
OPOs Under Fire
In July 2025, OPOs came under fire when Health and Human Services (HHS) Secretary Robert F. Kennedy announced he would be tightening “oversight of the practice of removing vital organs from neurologically impaired patients,” reported Health Care News.
On December 2, 2025, the House Ways and Means Oversight subcommittee held a hearing on OPOs that revealed, among instances of waste, fraud, and abuse, coercive practices used by OPOs to harvest organs from dying patients.
The provision in H.R. 7148 is puzzling because HIPAA (Health Insurance Portability and Accountability Act of 1996) allows the sharing of medical information, says Brase.
“We’ve heard that doctors and nurses may not be sharing it until late in the process, perhaps out of respect for the patients,” said Brase. “It’s possible that the OPOs wanted to give doctors and nurses congressional cover for what may seem to them, as patient advocates, an unethical intrusion and violation of privacy rights.”
Brase says HIPAA does not protect privacy, contrary to popular opinion, and that sharing of data with OPOs “without consent is one of the 12 National Priority Purposes for data sharing permitted by the HIPAA rule.”
Coercion Will Be Worse
This automatic and electronic data transfer will make coercive practices by OCAs worse, says Heidi Klessig, M.D., author of The Brain Death Fallacy. “For example, medical information was transferred between a hospital and an OPO 1,073,084 times in 2018; in other words, in a single year, over a million Americans had health and demographic information transmitted to OPOs,” said Klessig.
“Highly sensitive data such as HIV status, drug tests, and genetic testing results were shared even though fewer than one percent of those patients for whom the OPO collected data became organ donors,” said Klessig, who adds that Section 6502 of HR 7148 should be deleted to protect the rights, dignity, and privacy of patients and their families.
Protecting Patients, Families
There are several steps families and patients can take to protect themselves from being pressured to do something in a crisis moment, says Allison Lucas, J.D., the director of public policy at CCHF.
“First, individuals should understand their state’s laws regarding organ donation, the definition and history of ‘brain death,’ and the process for procuring organs,” said Lucas.
“Next, an individual should communicate their decision to donate or not donate organs through estate planning documents prepared by an attorney that complies with state law, such as a medical directive or health care power of attorney,” said Lucas. “CCHF has an organ donation refusal card available online that can be included in these documents.”
Lucas says individuals should share their end-of-life preferences with family, physicians, and medical decision-makers. “They should also have a conversation to ensure everyone is on the same page,” said Lucas.
Names could appear on databases unbeknownst to a patient or family.
“If an individual has indicated on a driver’s license or state organ registry that they would like to donate organs and later changes their mind, they should update their status in these databases and registries,” said Lucas.
HIPAA Limitations
HIPAA does not require hospitals to notify patients that they are sharing information with outside organizations, says Lucas.
“In theory, if the patient, family member, or medical agent communicates to hospital staff that the patient has refused or is refusing anatomical donations, it should prevent the patient’s protected health information from being provided to an organ procurement organization (because there is no organ donation to facilitate in this scenario),” said Lucas.
“This is one reason why having wishes fully executed in legal documents beforehand is important. However, the language in the recently passed appropriations bill that encourages “automated electronic hospital referrals” and “grant of remote access” would appear to share protected health information as a matter of course, regardless of the patient’s wishes regarding donation.
AnneMarie Schieber ([email protected]) is the managing editor of Health Care News.
