UPDATE, July 28, 3:20 p.m.: On Monday, Pennsylvania Rep. Dan Frankel (D-Allegheny) and state Sen. Mike Stack (D-Philadelphia) introduced the Patient Trust Act (HB 2303).
The act will amend the Medical Practice Act of 1985 to provide for the definitions of “evidence-based” and “medically accurate.”
Frankel’s office issued a release stating the legislation is in response to laws that have passed in several states, including Pennsylvania, that force providers to practice medicine in a way that is not in line with basic medical standards.
“Patients trust that their doctor is telling them the truth, the whole truth, and that their health is the doctor’s primary concern. We should protect that trust,” Frankel said. “Patients shouldn’t worry that they are on the receiving end of a political agenda when they go to the doctor.”
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A new law in Pennsylvania mandates that doctors read a script to pregnant patients after delivering the diagnosis of prenatal Down syndrome.
The Down Syndrome Prenatal and Postnatal Education Act specifies that the information doctors must read to patients will be made available by the state department of health. The law is referred to as “Chloe’s Law,” in reference to an 11-year-old Pennsylvania girl with Down syndrome whose father helped advocate for the policy.
According to the text of the legislation, the materials will include “up-to-date, evidence-based information about Down syndrome,” including “physical, developmental, educational and psychosocial outcomes,” life expectancy, and “any other information the department deems necessary.”
The bill was signed into law July 18, and will take effect 60 days after that date.
Rewire asked the Pennsylvania Department of Health for the script materials, but a department spokesperson said the materials don’t yet exist. “The bill was signed on July 18 so their research into the matter has just begun,” the spokesperson told Rewire.
Rewire also asked which organizations have provided information that will be used to develop the script, but that remains unclear. An early version of the bill lists the Jerome Lejeune Foundation, Parent to Parent of Pennsylvania, and Pennsylvania Early Intervention, though those organizations were either removed or crossed out in the final version of the legislation.
By signing a law mandating that doctors read a script that doesn’t yet exist, there is no way to assess if the materials are biased, or comply with scientific consensus—which is not always the case when it comes to government-mandated physician scripts, especially when the targeted patients are pregnant women.
Though the word “abortion” doesn’t appear in the bill’s language, Sen. Randy Vulakovich (R-Allegheny and Butler), who sponsored companion legislation in the state senate, told Rewire that “the idea behind the bill is to give this information so they can make an educated view … before they decide to abort the child.”
The legislation that passed is the house version, sponsored by Rep. Jim Marshall (R-Beaver). In his co-sponsorship memo seeking support for the bill, Marshall wrote that the law would “simply” provide “complete information” so that women in such circumstances are “better informed.”
Marshall describes himself as a “pro-life, pro-Second Amendment lawmaker.”
The percentage of people who choose to have an abortion after receiving a prenatal diagnosis of Down syndrome is unclear. Advocates for legislation like Chloe’s Law often refer to studies that say 90 percent of women abort in the wake of a Down syndrome diagnosis. But medical experts at the American College of Obstetricians and Gynecologists have concluded that those studies were generally too small to extrapolate from; the group issued a statement that “no current, comprehensive estimate of the number of pregnancy terminations following prenatal diagnosis exists.”
The Pennsylvania Medical Society, a professional association of doctors in the state, opposes the legislation. Their concerns aren’t just the content of the script; they don’t believe the government should be mandating that physicians read specific materials to patients at all.
“We genuinely believe that this legislation is well-intended, and we very much appreciate the motivation of the sponsor,” Scot Chadwick, legislative counsel for the group, told Rewire. “The problem that we have is that this is just one of a number of bills that mandate an aspect of the physician-patient relationship … and however well-meaning, we think that’s a problem.”
Chadwick says Chloe’s Law is part of a troubling trend. Referring to bills that legislate doctor-patient communications, he said, “We’re seeing more than we used to.”
Though a disproportionate number of these bills apply only to doctors when they are treating pregnant women, states have gagged or coerced physician communications in recent years for other politicized public health issues. In 2012, Pennsylvania passed what’s been called the “doctor’s gag rule” in regard to chemicals involved in fracking, the process of extracting natural gas that many experts believe is dangerous. Since 2011, many states have passed laws making it illegal for physicians to ask patients about gun ownership or gun storage, against the “clear recommendation” of the American Academy of Pediatrics.
Still, a disproportionate number of these types of bills implemented around the country do apply only to doctors treating pregnant women. The most well-known example is medically unnecessary forced ultrasound examinations.
Such policies have been called “misinformed consent” laws when they require doctors to relay medically inaccurate information to patients. According to the Guttmacher Institute, five states mandate that doctors relay “medically inaccurate claims of a link between induced abortion and breast cancer.” Seven states falsely assert that women experience only negative emotional responses after having an abortion.
All told, 32 states mandate counseling designed to dissuade a pregnant women from having an abortion.
Despite growing concern over such laws in the medical community and direct opposition from the Pennsylvania Medical Society, Chloe’s Law passed both chambers of Pennsylvania General Assembly almost unanimously.
Rep. Mark Painter (D-Montgomery), one of just four Pennsylvania lawmakers to vote against the bill, is both a politician and a disability rights advocate.
“I’m the father of two sons with autism, and I’ve been involved in disability rights advocacy since my older son was first diagnosed,” Rep. Painter told Rewire. “And I had very serious concerns about this bill.”
“I understand the motive of the bill … is a good one, which is when there’s prenatal diagnosis of Down syndrome, to make sure the parents understand that people with Down syndrome can live very long and full lives, and Down syndrome shouldn’t be regarded as immediate cause to consider abortion,” said Painter, who added that he is pro-choice. “My concern has to do with government legislating communications between doctors and patients. If we start here, where are we going to go next?”
Painter said that he remembers the exact moment when a doctor told him and his wife that his son, then three-and-a-half years old, had autism and was severely disabled. “[I remember] how shocked and distressed, and emotionally vulnerable I was at the time,” said Painter. “Legislators should not substitute their judgment for a doctor’s judgment.”
Rep. Pam DeLissio (D-Philadelphia and Montgomery), who sits on the Pennsylvania House Health Committee, voted against Chloe’s Law for similar reasons.
“How is this topic, Down syndrome, any different than perhaps somebody who has been just diagnosed with cancer?” DeLissio said to Rewire. DeLissio added that she posed serious questions about the bill that went unanswered, including how physicians were supposed to know about it, and how it would be enforced.
“I don’t think we should [ever be] dictating to physicians what information they must give to a patient,” she said. “It’s very bad precedent.”
DeLissio said she finds it ironic that Republicans, who purport to support smaller government, generally support these bills. “[Chloe’s Law] is just the opposite of this ideology. It’s more government, it’s more intrusion,” she said. “Apparently it’s hands off for business intrusion, but intrusion in personal matters seems to be accepted. That’s how I look at it.”
In response to the rise of “misinformed consent” bills, Rep. Dan Frankel (D-Allegheny) recently announced his intention to introduce the Patient Trust Act as part of the Women’s Health Agenda, a legislative package aimed at addressing women’s health and economic equality.
“We’ve seen efforts across this country to mandate the conversation and medical advice that a physician or another medical professional is going to tell a woman,” Frankel said last month while announcing the bill.
Frankel’s bill is also supported by state Sen. Mike Stack (D-Philadelphia), who has said that the legislation is intended to “prevent lawmakers from playing doctor.”
“I think it’s shameful that we need a law to put medical judgment in front of political calculation,” Stack said at a June news conference. “But we have seen members of this general assembly trying to force their political or religious view on doctors at the expense of women’s health. It’s shameful and it must stop.”
Disclaimer: Tara Murtha consults with the Women’s Law Project, a public interest law firm that assisted in the development of the Patient Trust Act.