Nothing to hide, nothing to fear? Part 1

Privacy is essential for informed consent.

Imagine this: Someone posts a sonogram on Facebook to announce their family is expecting a baby. Texts and emails and posts appear throughout the pregnancy and another announcement is made when the little one is born. Wanting to share their joy, moments and milestones are marked on social media and posts share the ups and downs of parenthood. After texts and calls and video chats with family through the years, the kiddo wants their own cell phone. Soon they’re on TikTok and Facebook and Signal. Mix in lockdowns, virtual schooling, and security cameras in public and private spaces, and we have quite the recipe for a digital footprint that’s been growing from the moment of conception.

Health data gets thrown into the mix, too. Have you ever texted someone while waiting at a doctor’s office? Do you use your cell phone or a smart watch to record any health data? (This includes pictures of a rash to ask for advice from trusted confidants or social media “friends” as well as a photo of your child snuggling up with warm soup and their favorite stuffed animal while sick.) Does your doctor use an Electronic Health Record? Have you used an app to track fitness, blood sugar, or menstrual cycles? Do you have a FitBit, an Oura Ring, or a heart rate strap that connects to an app like Garmin, Strava, or Peloton? What about your child or grandchild? Do they have any of these things?

These are just some of the ways personal health information becomes data. This digital collection of vital statistics, hobbies and habits, location, diagnosis – even your emotional reactions – make up a data version of you. Some of us were lucky enough to experience childhood without security cameras and cell phones and social media. But American children are now growing up with technology as an integral part of life — so much so, that our U.S. Supreme Court has observed, “a cell phone [is] almost a feature of human anatomy.”

What can be done with that health data? Cell phone apps already tie health decisions and conditions to access to buildings. The SHIELD T3 program (which stands for Target, Test, Tell) implemented at the University of Illinois and reported on by Stand for Health Freedom in our post titled “This is your warning” uses contact tracing and rapid COVID test results combined with QR codes to grant access to campus buildings. Cities around the globe have tied COVID shot and test result status to digital wallets and identification cards, such as New York’s Excelsior Pass.

Although the health pass and digital vaccine credentials have faced global pushback from citizens rejecting this global surveillance, these passport systems were only a dress rehearsal. The digitization of health information has been a globalist goal for decades, the first notable attempt being the Health Security Act proposed by former president Bill Clinton, which would have included a national patient ID. Recently, the call for a federal health patient identifier has been revived. This time, however, the dominant story is fear for patient safety, rather than the razzle dazzle of technological promise that dominated the early 90s.[ii]

We tend to think our personal health information (PHI) is private. HIPAA is probably the most-cited federal law after the 5th Amendment right to remain silent, revealing how deeply privacy is etched into the soul of America.

But this fundamental American right to privacy is under attack. Our children are living in a world that disregards privacy as a constitutionally guaranteed human right. The right to make medical and health decisions with informed consent, and not under coercion, demands that Americans make privacy a foundation of their advocacy, just as it is a foundation of our U.S. Constitution.

HIPAA is not a privacy statute

Let’s set the record straight on HIPAA. HIPAA does not protect your privacy. The Health Insurance Portability and Accountability Act (HIPAA) is a permissive collection of statutes and regulations that eliminates barriers to the flow of your PHI, rather than strengthening them. People use the term “HIPAA” interchangeably with “confidential” or “private,” but it is neither, and it applies in fewer circumstances than it is used.[iii] For example, it doesn’t apply to schools or to someone asking your COVID shot status.

A birds-eye view of HIPAA is that it applies to health information that can be linked to an individual, from point-of-care to payment, governing what can happen to that information outside of that container. HIPAA applies to health plans, health providers, and “clearinghouses” (the entities that handle health information between providers and insurance).

What can happen to your health data outside of the transaction of getting care and paying for it? The possibilities are truly endless – and many have nothing to do with your care. Health data is used for marketing, law enforcement, public health surveillance and compliance measures, and more.

One section of HIPAA regulations (45 CFR 164.512) is solely dedicated to ways that protected, identifiable health information can be used without your consent. It is called: “[U]ses and disclosures for which an authorization or opportunity to agree or object is not required.”[iv] This section includes sweeping access to identifiable health information for use in public health or law enforcement, government or court-ordered investigations and hearings, solicitation of organ donation, research purposes, national security, and some employment circumstances. It does not stop there, however, because other permissible disclosures and uses are listed in other sections of the law.

No one can explain the dangers of HIPAA to informed consent better than privacy expert and nurse Twila Brase, R.N., who truly wrote the book on health privacy titled “Big Brother in the Exam Room.” She revealed the twisted truth about HIPAA in an interview with SHF Director and Co-Founder Leah Wilson. Her printable resource “25 Ways HIPAA Harms” lists ways your data can be used without your consent, how HIPAA gets in the way of getting an accurate second opinion, and how it stops individuals from restricting the use of their health data even from companies like Google.

It’s powerful intel to understand that HIPAA used as a point of reference in a privacy law is a huge red flag. You know right away the law is not about privacy, it’s about data flow. Any legislator citing HIPAA as a standard for privacy is either misinformed or showing their stripes. In either situation, there’s an opportunity to educate both legislators and voters about the true nature of the hand of the federal government in health privacy.

States are the solution to health privacy concerns

What is the solution to stopping the snowball of HIPAA data disclosures from becoming an avalanche that buries privacy? The answer is state law. Protecting privacy has traditionally been an area of state, not federal, law. The federal government had no reason to enact privacy standards until they started obtaining personal information on citizens.

States enact confidentiality laws that protect your health data. Some states have been able, with the help of health advocates, to protect citizens from HIPAA by enacting stronger state law. This is why it is extremely important to prevent federal law from overriding state law (a process known as preemption).

Unlike the federal government, states are not pressured to please companies and organizations from across the globe. States can tailor their laws to the needs of their citizens and negotiate with those doing business within their boundaries without having to dilute protections to please every party. Corporations may complain that a patchwork of state law drives up the cost of doing business out of complexity, but that argument is akin to putting lipstick on a pig. It’s a distracting and disingenuous argument to say global companies cannot accommodate state laws. States will not try to drive companies out of business when they weigh individual fundamental rights against the benefits of having a strong business community in their state. Nothing stops a business from adopting the highest standards of privacy protection to minimize adaptations of doing business in different states. The United States Constitution was written to protect the fundamental rights of individuals against tyrants holding the purse strings.

Taking away the right of the states to legislate privacy protections would force citizens to fight violations with one hand tied behind their backs. The varying approaches of the states will inevitably lead to the best outcome to balance the most interests: It’s a check on the power of Big Data and Big Tech. But if the federal government has a monopoly on privacy law, the richest companies in the world have one-stop shopping for their legislative agendas.

It’s no surprise, then, that Big Data and Big Tech (and any congressperson aligned with them) do not support federal data privacy protection law unless it overrules state law.

Despite massive government overreach into our private health data, it’s not too late to stand up for privacy. The government would not be trying to pass laws to modernize public health data if they had access to all they need. Immunization records, for example, stand in state silos of information. It’s up to us to encourage strong state laws and to stop the federal government from overriding them.

This article is Part 1 of a 2-part series


References & Sources

[i] Carpenter V. United States, 585 US ___ (2018) at 13, citing Riley v. CA, 573 US 373. (internal quotes omitted).





Chrissy Scott

Executive Assistant and Social Media Manager

A labor and delivery nurse with a lifelong passion for maternal and fetal health, Chrissy Scott left her job of 19 years after learning the truth about the harms caused by the medical system. In 2009, she was mandated by her employer to receive the H1N1 vaccine during her first trimester of pregnancy with her second child. She was assured that the vaccine was “safe and effective” for pregnant women, but her son was born with a kidney defect that could have been fatal. She didn’t connect the dots to vaccine injury until several years later when the declining health of her oldest son drove her to seek answers outside of allopathic medicine.

This personal journey ignited in her a new passion for truth and transparency in health care. As SHF’s Executive Assistant, Chrissy facilitates communication and local advocacy initiatives alongside Leah Wilson for their home state of Indiana. She also manages and creates graphics for SHF’s social media accounts and the website’s swag shop.

Chrissy earned her nursing degree from Anderson University and served her entire career at her local hospital. While she’s no longer a floor nurse, her five very active boys frequently test her nursing skills! She homeschools her children and has been co-owner of a successful home décor sign business with her sister.

“Parents, being the experts on their own children, are best suited to make decisions for the well-being of their family. To do this properly, they must be given full and accurate information and be free from force or coercion.”

Ellen Chappelle


Ellen Chappelle serves as SHF’s resident wordsmith. A seasoned writer and editor, she’s enthusiastic about ensuring that our content is clear, concise, and inspiring.

Ellen is most energized by working on projects that transform lives. A truth seeker as well as a journalist, she’s disturbed by the lack of accuracy in today’s media and determined to help share fact rather than fiction. And having found greater healing with alternative approaches, she’s also passionate about preserving our freedom to make informed health choices.

Past projects include serving as regional editor of a dog magazine, color and trend specialist for a small cosmetics company, arts columnist, newspaper reporter, ghostwriter, and creator of website content for artists and small businesses.

With a degree in journalism and theatre, Ellen is also a performer. She enjoyed singing and dancing on a cruise ship and traveling with a national musical theatre tour, as well as recording industrial videos, television commercials, and radio voiceovers. She also creates handcrafted jewelry in wire, chain maille, and fused glass.

“Despite what some would have us believe, the fact remains that this nation was founded on biblical principles by people who wanted freedom to worship God and live their lives without government involvement. It’s never been more critical to fight for those rights.”


Executive Director and Co-founder

An attorney with a background in complex litigation and advocacy, Leah Wilson is passionate about children’s health and has researched and worked on child welfare issues for more than a decade.

The overmedication of children in foster care as a form of behavior management is what compelled Leah to become an advocate and foster parent. During her time as a court-appointed special advocate for abused and neglected children, Leah witnessed the rampant use of psychiatric drugs among foster kids. She also discovered that, in addition to many extensive requirements, the state had a policy that all foster children and foster families be fully vaccinated, without exception. Through her involvement in law, health and the foster care system, it became abundantly clear to Leah that the single most important issue affecting child welfare in the United States is the practice of one-size-fits-all medicine via medical mandates. This motivated Leah to expand her advocacy beyond foster care to all children nationwide and to start Stand for Health Freedom (SHF) in 2019.

A graduate of the Saint Louis University School of Law, Leah holds dual bachelor degrees in political science and Spanish from Indiana University. In addition to her advocacy work with SHF, Leah is the owner and former operations director of MaxLiving Indy, one of the largest natural health centers in the Midwest. She is also an educator on holistic health as well as a sought-after speaker on issues ranging from religious rights to greening your home.

“Parental rights and religious freedom are God-given natural rights that cannot arbitrarily be taken away by government authorities. Parents are the single most important factor in a child’s success; I stand in full support of this sacred relationship.”

Sayer JI

Director and Co-founder

Sayer Ji is a widely recognized researcher, author, lecturer, activist, and educator on natural health modalities. Among his many roles, he is an advisor to Stand for Health Freedom, a reviewer and editor of the International Journal of Human Nutrition and Functional Medicine, an advisory board member of the National Health Federation, a steering committee member of the Global GMO Free Coalition, and the co-founder and CEO of Systome Biomed Inc., a revolutionary scientific validation framework.

Most notably, Sayer is the founder of, the world’s most widely referenced, evidence-based natural health resource of its kind. He founded the platform in 2008 to provide an open access, evidence-based resource supporting natural and integrative modalities. Today, has more than a million visits per month, serving as a trusted resource on myriad health and wellness topics to physicians, healthcare practitioners, clinicians, researchers and consumers worldwide.

Sayer attended Rutgers, The State University of New Jersey, where he studied under the notable American philosopher Dr. Bruce W. Wilshire. He received a Bachelor of Arts in philosophy in 1995, with a focus on the philosophy of science. His new book, Regenerate: Unlocking Your Body’s Radical Resilience through the New Biology, was released in March 2020 and is an Amazon bestseller.

“I truly believe that education will be our greatest shield against accelerating the erosion of civil liberties, including the right to bodily sovereignty, as well as the greatest catalyst for positive change on this planet moving forward.”

Bailey Kuykendoll

Associate Director

Designer and visual marketer Bailey Kuykendoll began advocating for health and religious freedom and parental rights in 2014 after learning she was pregnant. A self-described skeptic, she’s not afraid to ask questions and do copious amounts of research to reach her own conclusions.

She’s also not afraid of hard work. As SHF’s Relationship Manager, Bailey truly keeps the organizational boat afloat. Working closely with health freedom advocates in each state, she ensures that SHF has campaigns for health-freedom-related bills and petitions on our website and across social media, spreading the word to encourage people to contact their legislators. She builds campaigns, graphics, website pages, and relationships.

Bailey earned a design degree from Harrington Institute of Design in 2008. She then served as a production assistant on several shows for HGTV, followed by working behind the scenes on the X Factor, small indie films, music videos, and documentaries. Bailey joined Health Freedom Florida after moving to the East Coast, becoming co-president of the grassroots organization in 2019. While at Health Freedom Florida, she successfully filed a state bill designed to stop discrimination based on your health status. She joined SHF in the fall of 2020.

“God placed a calling on my heart back in 2008 to be a part of something bigger for Him. Twelve years later, the opportunity came knocking to help others lean into their natural-born rights and take a stand for themselves and their families. I knew this is where I was called to be, and I have never looked back.”

Valerie Borek


Valerie Borek is a passionate advocate for health rights and family privacy. A mother of two with degrees in law and biochemistry, she is perfectly positioned to lead SHF advocates through complex health-rights policy. Her work is guided by a love for American values, uncovering truth, and a passion for empowering others. Valerie has served as SHF’s policy analyst since 2021.

Valerie’s understanding of the value of freedom to make one’s own health care choices is not just academic. Health freedom has kept her boys alive and thriving. Her choice to have home births jump-started her advocacy for health privacy. Her eldest son survived a rare and deadly cancer because her family was able to navigate medical care while holding onto values that were sometimes at odds with recommendations.

Before joining SHF, Valerie specialized in health and parenting rights at her boutique law firm, especially surrounding birth and vaccine rights. She advocated for informed consent in health care and transparent food labeling in her state. She helped found the Birth Rights Bar Association and was honored to present their argument to the Delaware Supreme Court that midwifery is not the practice of medicine, in support of a trailblazing midwife.

“Health is the foundation of how we show up in this world to love, serve, and create. Americans are blessed to live in a country that gets stronger the more we protect fundamental rights, like informed consent and privacy, so individuals and families can thrive.”

Mary Katherine LaCroix


Mary Katherine LaCroix became involved with SHF as a volunteer in 2019 when the religious exemption for childhood vaccines was at risk in her home state of New Jersey. She believes strongly that parents have the responsibility for their children’s health, education, and faith formation and that only they have the right to make medical decisions and manage their care.

She has worked in fundraising for more than 25 years at various educational, cultural, human services, and political organizations. A graduate of the University of Scranton, she holds a degree in History and English Literature.

Mary Katherine is thrilled to have this opportunity to work with and help grow SHF, believing that together we can achieve even greater impact in protecting our rights and caring for our loved ones. She enjoys spending time with her husband, two children and large extended family, as well as volunteering to support the special needs community.

“Parents are taught that they must trust the experts. That’s what we did, until we learned that the experts can be wrong and don’t always know what is best for your child. Parents should instead feel empowered by their natural, God-given ability to advocate and care for their children. SHF is here to give them the tools to do just that.”

Sheila Ealey

Political Analyst

Dr. Sheila Lewis Ealey is the founder and former director of the Creative Learning Center of Louisiana, a therapeutic day school for children who are on the autism spectrum or struggling with other nonverbal intellectual disabilities. The wife of a former U.S. Coast Guard Officer, she is also the mother of four children. Her son was diagnosed with severe autism spectrum disorder at 18 months. He is now a young man and considered moderate and emerging.

Sheila and her twins were featured in the documentary “Vaxxed.” She has traveled extensively, advocating for medical freedom. She continues to educate disenfranchised parents about their fundamental rights to religious and philosophical exemptions, their ability to live sustainably on a limited budget, and the importance of nutrition and biomedical interventions for optimum health with autism. She also writes individual homeschool curriculums for parents of children with autism or intellectual disorders. Sheila is a trustee for the Autism Trust, USA, and on the board of directors of Children’s Health Defense.

Over the past 20 years, she has educated herself to use natural healing modalities for the body and brain. Her formal education includes degrees in communication, special education curriculum, and a doctorate in Educational Leadership in Special Education. Sheila serves as an assistant content advisor and political analyst for SHF.

“It is not the Constitution’s job to protect our liberties, as it is not a philosophical document but a legal one. Its purpose is to limit the powers and authority of our federal government in hopes of preventing an intrusion upon our unalienable rights. We are obliged to maintain our government within its limits.”

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