Conferences’ duty of care in the face of discriminatory health policy

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I’ve spoken at many medical conferences since co-founding the Peggy Lillis Foundation for C. diff Education & Advocacy following my mother’s death from a C. difficile infection in 2010. Unfortunately, I am often the only patient advocate. The pressure of representing patients in a group of hundreds of clinicians, scientists, and administrators can be intimidating. But for the most part, I have always felt welcome and valued.

One of my favorites is the Making A Difference in Infectious Diseases annual conference, primarily for infectious disease pharmacists but attended by nurses, physicians, and other health care workers. I did a keynote presentation at the 2018 MAD-ID, and last year one of our C. diff Advocates presented. In both cases, our talks were well received.

When I was invited to present at this year’s conference, I happily agreed. But as the event grew closer, I became uncomfortable participating because the meeting would be in Orlando, Florida. I’m a visibly queer, gender-nonconforming gay man, and Florida has become an incredibly hostile place for LGBTQ people. For example, following the passage of its 2022 “Don’t Say Gay” law, which prohibits teachers from discussing gay sexuality and gender variance with their students, Florida lawmakers have introduced an additional ten bills that expand “Don’t Say Gay” into high school, prohibits gender-affirming care for transgender minors, bans abortion after six weeks, and, most recently a truly despicable “freedom of conscience” law that would permit doctors, nurses, pharmacists, and others to deny care to anyone based on their religion or deeply held beliefs.

Through these laws, Florida lawmakers have made their state incredibly dangerous not only for women and LGBTQ people who reside there but also for any visitor such as myself. If I’m injured or become ill while attending a conference like MAD-ID, I face the possibility that a first responder or clinician could refuse to treat me because I’m gay.

But I knew the MAD-ID organizers had put all their plans into place before most of these bills were introduced. So with some trepidation, I decided to keep my commitment.

While at the conference, I spoke with some organizers and attendees who were sympathetic to my fears and discomfort at bringing business to a state hostile to women and queer people. At the national level, some medical societies have spoken out. For example, the Endocrine Society rebuked the Florida Medical Board’s support of the law that now bans gender-affirming care for minors. In its November 2022 statement, the Society called on the Florida Board of Medicine to reverse its position, citing the ban as “blatantly discriminatory and contradictory to medical evidence” supported by a wide array of medical societies, including the American Academy of Pediatrics, the American Medical Association, the American Psychological Association, and many others.

Though the state’s Governor, Ron DeSantis, has been profligate in legislative attacks against women and LGBTQ people, fourteen other states have similarly decided they know health care better than doctors. These states include Arkansas, Georgia, Idaho, Indiana, Iowa, Kentucky, Mississippi, Montana, North Dakota, Oklahoma, South Dakota, Tennessee, Utah, and West Virginia. All of these states have banned gender-affirming care for minors. Some have passed or are currently considering what transgender attorney Alejandra Caraballo calls “let them die” laws, which would exempt health care providers from having to provide care to people based on religious or conscientious objection. Most are restricting or banning reproductive care.

Refusing care based on a patient’s gender, race, sexual orientation, religion, or any other characteristic violates the fundamental principles of medical ethics: beneficence, nonmaleficence, autonomy, and justice. States that have absolved physicians from their ethical commitments and forbidden health care to be provided to women and LGBTQ people are no place for medical conferences. Medical societies and professional associations must make clear their objection to the state interfering in medicine by withholding the revenue their conferences bring. And by only holding meetings in states that enshrine rights for LGBTQ people and women, societies, and associations are also helping to ensure their members’ safety.

As Dr. Sarah Hull of Yale wrote in Stat News back in 2019:

It is not a physician’s job to tell patients how to live according to the physician’s personal code of ethics, whether religious or secular. Nor should a physician withhold treatment from patients simply because they fail to adhere to his or her personal standards of morality. Rather, a physician’s duty is to promote patients’ wellness and flourishing through the application of evidence-based medicine to the best of his or her professional ability. Personal beliefs, religious or otherwise, must not interfere with that.

Nor is it the state’s job to tell physicians how to perform medicine based on religious doctrine. Yet, fourteen states have banned abortion completely, primarily based on religious views that life begins at conception. Similarly, many people who oppose gender-affirming care do so based on a religious understanding of sex as God-given and binary. We have a separation of Church and State in this country, which must be vigorously adhered to remain a pluralistic Republic. To that end, evidence-based medicine must also be protected from religious overreach. As leading institutions for medicine, societies, and professional associations must defend citizens’ rights to access evidence-based care without state interference.

With fourteen states now banning abortion and over 474 anti-LGBTQ bills introduced just this year, the question becomes, “Where is our line in the sand?” For our purpose, I would propose that the line is any legislation that interferes with the provision of care based on medical consensus and endangers the safety and lives of its residents and, potentially, conference attendees. This would include abortion bans, bans on gender-affirming care, and “freedom of conscience” laws that may allow clinicians to deny care. This adds Alabama, Louisiana, Missouri, Texas, and Wisconsin to the list of states medical conferences should boycott.

Calling for a boycott of nineteen states may seem extreme. Still, those who believe in evidence-based medicine, pluralism, and human rights cannot even tacitly endorse state-sanctioned discrimination and medical violence against vulnerable populations.

Most health care providers believe in the maxim, “First, do no harm.” States that outlaw gender-affirming care and abortions and allow bigoted clinicians to refuse care are actively harming their residents and visitors. Associations and societies that produce health care conferences must stand with all patients by boycotting these increasingly hostile states. States that forbid evidence-based care for women and LGBTQ people do not deserve our business. And politicians who withhold health care from marginalized communities deserve our scorn.

Christian John Lillis is executive director, Peggy Lillis Foundation for C. diff Education & Advocacy.


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