On January 18, the US Department of Health and Human Services proposed new regulations and announced the creation of a “Conscience and Religious Freedom Division,” both focused on supporting healthcare providers who refuse to perform certain healthcare services on religious or moral grounds.
"Not more of this shit," thought Marian, the mother of a transmasculine teen named Julian who lives in rural Georgia. (Marian chose to withhold her and Julian’s full names due to safety concerns.)
In 2016, Marian said a nurse practitioner in a local supermarket's walk-in health care clinic had repeatedly and intentionally misgendered Julian while administering his testosterone injection, asking, "What kind of a doctor would prescribe this to a girl?" As far as Marian could see, the provider’s disgust was evident—and a week later, the provider called to inform her there would be no staff available to perform the procedure in the clinic for Julian's next injection, suggesting they instead try a different clinic in a nearby town.
While the nurse practitioner’s reasons for refusing Julian care were ambiguous, her actions were legal; according to Georgia state law, a pharmacist may “refuse to fill any prescription based on professional judgment or ethical or moral beliefs.”
Marian wasn't taking any chances; instead of risking another refusal, she opted for the 200-mile round trip to Julian’s doctor's office in Atlanta.
To those who have been denied health care on religious or moral grounds, the HHS announcement may have felt like the reopening of an old wound. But healthcare workers refusing to provide care to sexual minorities—and transgender people in particular—are nothing new, and neither are the laws allowing them.
In the 1970s, Congress passed a series of laws to protect conscientious objections in healthcare. Among them are the Church Amendments, which prevent members of the healthcare workforce from being required to provide or participate in providing services that are contrary to their moral or religious beliefs. In 2008, in the final days of the George W. Bush administration, the US Department of Health and Human Services issued regulations intended to help enforce protection of these healthcare refusals by, for example, requiring health facilities to certify compliance with the law in writing in order to receive federal health care funds.
Some saw the regulations as confusing and insufficiently protective of patients, and they were largely rescinded under President Barack Obama's administration in 2011. However, the laws undergirding them remained in place, so while institutional burdens were lifted, employees were still protected by federal law if they refused to participate in certain procedures.
Both the law and ethical rules published by the American Medical Association permit healthcare workers to refuse to provide certain services that are beyond their abilities, not medically necessary, or incompatible with their personal, religious, or moral beliefs. However, discrimination against patients based on race, color, national origin, and disability is forbidden by federal civil rights law, and many states have passed statutes protecting additional classes of people.
"There's a difference between [not] being willing to provide a service and [not] being willing to provide a service to a certain person," said Mark Wicclair, bioethicist and author of the 2011 book Conscientious Objection in Health Care: An Ethical Analysis. But the recently proposed HHS regulations don’t distinguish between the two, opening the door to provider discrimination against patients on the basis of a variety of classes not protected by federal law, including gender identity and sexual orientation. And because the regulations allow for federal law to trump state laws, the resolution of conflicts between federal and state laws would fall to the courts, potentially threatening state laws that protect sexual minorities from discrimination.
Also worrisome, said Wicclair, is the broader definition of activities a provider can refuse to do under a claim of conscience—newly defined as activities with an “articulable” connection to a procedure, a change from the previous “reasonable.” This paves the way for more refusals from more categories of healthcare workers without fear of being disciplined by their employers.
Discrimination against sexual minorities by healthcare providers is a common problem, but is magnified further among transgender people. In a 2017 survey conducted by the Center for American Progress (CAP), an independent nonpartisan policy institute, eight percent of 857 LGBTQ respondents said a doctor or other healthcare provider had refused to see them because of their actual or perceived sexual orientation, while 29 percent of the 101 transgender respondents—more than three times as many—reported this type of refusal. (These findings are similar to those in the 2015 US Transgender Survey, in which 23 percent of respondents reported abstaining from necessary healthcare over the past year due to fear of being mistreated by providers.)
Transgender respondents to the CAP survey also reported high rates of discriminatory or abusive language or behavior in healthcare settings: 21 percent said a provider had used harsh or abusive language during their treatment, and 29 percent experienced unwanted physical contact from a provider.
Watch VICE on HBO explore how doctors and parents of transgender children are supporting their transitions:
Not all transgender people are at equal risk for being excluded from or poorly treated in a healthcare environment. An analysis of responses to a 2008-9 survey of transgender people nationwide, found that people were at higher risk of being refused healthcare if they were transfeminine (i.e. assigned male gender at birth, but identifying and often presenting on the female side of the gender spectrum), identified as Native American or multiracial, or had low incomes.
Respondents living in southern and western states were more likely to report healthcare refusals, which might have been explained by regional variations in state politics: the more strongly Republican a state is, the more likely it was that their transgender residents had experienced healthcare refusal.
Not all healthcare providers who refuse care to transgender people do so on the basis of religious or moral conviction—many say they simply feel uneducated on the subject, and are afraid of doing harm by providing care in which they have little expertise. But to the patient, those specific reasons often don’t resonate, said Jackie White Hughto, who led the study on risk factors for transgender healthcare refusals.
"If you're a trans person trying to find a doctor," she said, "are you really distinguishing between a doctor who denies you based on bias and one who denies you based on uncertainty of their skillset?"
People who have been refused healthcare due to discrimination often refuse to seek healthcare in the future. According to the CAP survey, 14 percent of LGBTQ people and 22 percent of transgender people who experienced discrimination on the basis of their sexual orientation or gender identity avoided or delayed medical care as a result, resulting in delayed preventive care screening.
The stigma experienced by sexual minorities who have been refused health care can contribute to worsened physical and mental health. "The act of being denied—having your identity challenged in that way, your dignity challenged in that way—that in and of itself is harmful," said Laura Durso, who leads LGBT policy at CAP.
As with the Masterpiece Cake Shop Supreme Court case, wherein a Colorado baker refused to sell a wedding cake to a same-sex couple on the basis of his religious beliefs about marriage, opponents of equality often argue that a person who has been refused healthcare can "go down the street" to find an alternative provider, said Durso. But the CAP survey shows otherwise: 30 percent of transgender respondents living outside a metropolitan area said that if their nearest hospital or clinic refused them care, it would be very difficult or impossible to find the same service at a different facility. Other studies have also shown that rural sexual minorities, including transgender people, have a harder time accessing healthcare than do those who live in urban areas. And not everyone has the resources to take a day off work or school to get to the nearest welcoming provider in the case of a healthcare refusal, as Marian did.
Although patients report being refused care or treated poorly by all sorts of healthcare workers, including doctors, nurses, pharmacists, and others, it's unclear whether certain professions are implicated more often in these reports than others. And it's a difficult thing to study, said Durso, both because providers may not want to admit refusal of care or mistreatment of patients and because they themselves may sometimes fail to recognize it.
But Marian takes a dimmer view of the motivation behind health care refusals, and is apprehensive about the proposed regulations’ effects. “It was already hard enough to get treated with respect by the average pharmacist/doctor/nurse,” she wrote in an email, “but now they'll have a policy they can point to [in order to] justify their bigotry."
Keren Landman is a practicing physician who specializes in infectious diseases and public health. Follow her on Twitter.
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