Citizens’ Council for Health Freedom Collects Stories of How HIPAA Hurts Patients; Implores Government Office to Restore Pre-HIPAA Rights
For Decades, CCHF Says, the Public Has Been Deceived—HIPAA Doesn’t Protect Privacy at All
ST. PAUL, Minn.—For much of its 20-plus-year existence, Citizens’ Council for Health Freedom (CCHF) has worked to educate patients, policy makers, the media, medical professionals and even Congress that the Health Insurance Portability and Accountability Act (HIPAA) “Privacy Rule” isn’t about privacy at all.
In February, CCHF issued comments to the Office for Civil Rights (OCR) at the U.S. Department of Health and Human Services after it requested information on “Modifying HIPAA Rules To Improve Coordinated Care.”
CCHF co-founder and president Twila Brase said the changed rule could be out as early as this summer, but in the meantime, the patient freedom-centered organization is working to keep the fact HIPAA hurts patients in the spotlight.
For example, CCHF has dedicated part of its website to show how HIPAA is harmful to patients. On the “HIPAA Hurt Me” page, CCHF collects stories about the negative effects patients experience when they refuse to sign the HIPAA form at a doctor’s office or clinic, such as one woman in Washington, who shared her “HIPAA Hurt Me” story with CCHF.
“I was denied my appointment at [a practice] after driving 1 hour from my home to the appointment,” the patient reported. “The receptionist said because their HIPAA notice was on the same form as their ‘office policy on payment’ form that it was their clinic policy that they could not see me if I did not sign the form. I crossed out the HIPAA portion, wrote ‘deny HIPAA’ and signed the form satisfying their requirement. Still, the doctor was consulted and refused to see me.”
CCHF informs patients on the “HIPAA Hurt Me” page:
By law, you have a RIGHT to REFUSE to sign the HIPAA Form and the HIPAA acknowledgement statement signifying receipt of the Notice of Privacy Practices (NPP). The federal government has publicly stated that you have a right to refuse, and no law requires your signature. This includes the right to refuse to sign the form or statement even after the hospital or clinic staff writes “refused” on it.
NOTE: Refusing to sign does not provide you with any privacy protection. Under HIPAA, according to the federal government, there are potentially 2.2 million entities (including 1.5 million “business associates”) that could be given access to your private data without your consent.
However, if you do NOT sign, and if your data is then broadly shared without your consent and you complain about the disclosure or use of your data, the clinic staff or attorneys will not be able to say that you signed the form acknowledging that you know your data can be shared broadly under HIPAA. The staff will not be able to tell you that it was your responsibility not to share confidential data with your doctor. They will not be able to blame YOU for sharing data that they disclose without your consent.
If you refuse to sign the HIPAA privacy form, some clinics or doctors or hospitals may refuse to provide treatment to you or your children. This is in clear violation of your rights—but we have discovered that they may not know you have that right. Be gentle but firm. Consider contacting us to request wallet-size cards to give to the staff.
NOTE: The U.S. Department of Health and Human Services has a web page that says exactly what the clinic and hospital are supposed to do when you lawfully refuse to sign the HIPAA form or the HIPAA acknowledgement statement.
In its comments to the OCR, CCHF asserted that it supported the rights of “patients to keep their private medical information confidential, thus we have long opposed HIPAA due to its intrusion on the patient-doctor relationship and its infringement of privacy rights. Our opposition continues today and has only grown with the EHR mandate, MIPS/APMs, HIEs, eHealth Exchange and interoperability mandates.”
Citizens’ Council for Health Freedom has been engaged in a two-decade campaign to inform Americans that despite what they’ve long been told by the news media, government agencies, health plans, legislators, Congress, hospitals and doctor’s offices:
- HIPAA is not a privacy rule.
- HIPAA gives outsiders legal license to share, use, analyze, link and sell patient data.
- HIPAA empowers corporations, government, health plans and others to profit from access to and use of confidential patient information without the patient’s consent.
“HIPAA’s primary focus is not privacy; it is security of the data before, after and while patient’s privacy is being violated, which is what happens when the patient’s data is disclosed and used without the patient’s consent,” Brase said. “If privacy were the focus, the HHS ‘Wall of Shame’ would be littered with documentation of all the times patient privacy is violated every day. HIPAA does not protect the patient data the way patients think it does or in the way patients define and interpret the word ‘privacy.’ Instead of requiring patients to sign a statement that wrongly convinces them that their data is held in confidence, OCR should have practitioners and institutions make a good faith effort to have patients sign a form/statement that faithfully and ethically shares the truth about HIPAA.
“As CCHF often says, ‘He who holds the data makes the rules,’” Brase added. “Thus, protecting patient privacy protects not only the confidentiality of private information, but the individual freedom and choices of citizens.”
In a new book, Brase writes extensively about the privacy-stealing HIPAA rule (Section IV), as well as socialized medicine, patient privacy, electronic health records, health freedom and how the Affordable Care Act has harmed patients and doctors since 2010. Find “Big Brother in the Exam Room: The Dangerous Truth About Electronic Health Records” online wherever books are sold or at BigBrotherintheExamRoom.com.
Learn more about CCHF at www.cchfreedom.org, its Facebook page or its Twitter feed @CCHFreedom. Also view the media page for CCHF here. For more about CCHF’s initiative The Wedge of Health Freedom, visit www.JointheWedge.com, The Wedge Facebook page or follow The Wedge on Twitter @wedgeoffreedom.