News Law and Policy

Pennsylvania Law Requires Doctors to Read Scripts to Pregnant Patients With Prenatal Down Syndrome Diagnoses (Updated)

Tara Murtha

The state's latest government mandate on doctor's office communications requires doctors to read an as-yet-unwritten script to pregnant patients after delivering the diagnosis of prenatal Down syndrome.

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.

News Abortion

Pennsylvania’s TRAP Law Could Be the Next to Go Down

Teddy Wilson

The Democrats' bill would repeal language from a measure that targets abortion clinics, forcing them to meet the standards of ambulatory surgical facilities.

A Pennsylvania lawmaker on Wednesday introduced a bill that would repeal a state law requiring abortion clinics to meet the standards of ambulatory surgical facilities (ASF). The bill comes in response to the U.S. Supreme Court’s ruling striking down a similar provision in Texas’ anti-choice omnibus law known as HB 2.

A similar so-called targeted regulation of abortion providers (TRAP) law was passed in Pennsylvania in 2011 with bipartisan majorities in both the house and state senate, and was signed into law by former Gov. Tom Corbett (R).

SB 1350, sponsored by Sen. Daylin Leach (D-Montgomery) would repeal language from Act 122 that requires abortion clinics to meet ASF regulations. The text of the bill has not yet been posted on the state’s legislative website.

The bill is co-sponsored by state Sens. Art Haywood (D-Philadelphia), Larry Farnese (D-Philadelphia), and Judy Schwank (D-Berks).

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Leach said in a statement that there has been a “nationwide attack on patients and their doctors,” but that the Supreme Court’s ruling upholds the constitutionally protected right to terminate a pregnancy.

“Abortion is a legal, Constitutionally-protected right that should be available to all women,” Leach said. “Every member of the Pennsylvania General Assembly swore an oath to support, obey and defend the Constitution of the United States, so we must act swiftly to repeal this unconstitutional requirement.”

TRAP laws, which single out abortion clinics and providers and subject them to regulations that are more stringent than those applied to medical clinics, have been passed in several states in recent years.

However, the Supreme Court’s ruling in Whole Woman’s Health v. Hellerstedt that struck down two of the provisions in HB 2 has already had ramifications on similar laws passed in other states with GOP-held legislatures.

The Supreme Court blocked similar anti-choice laws in Wisconsin and Mississippi, and Alabama’s attorney general announced he would drop an appeal to a legal challenge of a similar law.

Commentary Politics

Pennsylvania Lawmakers Square Off Over Abortion Law, New Bill

Tara Murtha

Anti-choice legislators in Pennsylvania recently pulled out all the stops when debating a bill that would be one of the nation's harshest abortion laws if passed. But in the wake of a recent Supreme Court ruling, other state lawmakers are trying to stop that bill and change existing policy.

With the new U.S. Supreme Court abortion ruling, some Pennsylvania lawmakers want to roll back provisions similar to those struck down in Texas—and to head off any new restrictions in a bill debated on the house floor in late June.

Several legislators have called for repeal of Act 122, which was enacted in 2012 and mandates that Pennsylvania abortion clinics meet the standards of ambulatory surgical centers.

The U.S. Supreme Court struck down Texas’ ambulatory surgical center provision in the 5-3 Whole Woman’s Health v. Hellerstedt decision. Justice Stephen Breyer concluded in the opinion that the provision represented a “substantial obstacle in the path of women seeking a previability abortion” and was unconstitutional.

Soon after the decision, Sen. Daylin Leach (D-Montgomery/Delaware), a member of the bipartisan Women’s Health Caucus of the Pennsylvania legislature, wrote a memo recommending repeal of Act 122. And at a June 30 press conference organized by the caucus, Rep. Steven Santarsiero (D-Bucks) introduced legislation to do just that. He weighed in on another bill, HB 1948, discussed in the house on June 21.

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During that debate, “[anti-choice lawmakers] were exposed, they were unmasked,” Rep. Santarsiero said. “They stood one person after another after another in support of [HB 1948], and they came right out and said this is all about the anti-choice movement. They were exposed. They tried 20 years ago to claim it was not about that, but they’re not making any pretense at this point.”

Like Act 122, HB 1948 is an urgent matter. Anti-choice lawmaker Rep. Kathy Rapp (R-Warren) introduced the latter legislation in April, which would be one of the most severe laws in the country if enacted. HB 1948 would ban abortion beginning at 20 weeksIt also includes a “method ban” provision, which would criminalize dilation and evacuation (D and E), often used after miscarriages and for abortions earlier than 20 weeks.

Currently, HB 1948 is still on the schedule of the Pennsylvania Senate Judiciary committee. Though the senate may reconvene this summer, it’s unclear when or whether HB 1948 will move forward.

But advocates must not lose sight of this bill. 

A ‘Dangerous Precedent’

HB 1948 inserts the legislature into the doctor-patient relationship, forcing medical professionals, ordinary Pennsylvanians, and even some legislators out of the process. In April, lawmakers twice rejected requests for input on HB 1948 from both medical professionals and the public. When Rep. Dan Frankel (D-Allegheny) spoke out against the bill, his microphone was reportedly cut off.

Struggling to be heard, doctors and relevant medical associations sent open letters and wrote op-eds against the bill. “We are highly concerned that the bill sets a dangerous precedent by legislating specific treatment protocols,” wrote Scott E. Shapiro, president of the Pennsylvania Medical Society, in an April letter sent to legislators.

They are right to be concerned. Around the country, lawmakers with no medical training frequently propose method bans to criminalize the safest, medically proven procedures. They then threaten to imprison doctors if they don’t provide less-than-optimal care for their patients. This kind of legislative coercion brings to mind Donald Trump’s March statement that women who seek abortion should suffer “some form of punishment” for having an abortion.

Punishment, indeed. Under HB 1948, the punishment can go one of two ways: Either women receive less-than-optimal care, or doctors must be incarcerated. While considering the potential fiscal impact of HB 1948, lawmakers discussed how much it would cost to imprison doctors: $35,000 a year, the annual expense to care for an inmate in Pennsylvania.

My colleagues here at the Women’s Law Project, who co-authored a brief cited by Justice Ruth Bader Ginsburg in her Whole Woman’s Health v. Hellerstedt concurrence, have sent an open letter to senate leadership asking them to remove HB 1948 from further consideration.

The letter said:

If enacted, HB 1948 would inflict even greater harm on the health of Pennsylvania women than House Bill 2 would have inflicted on Texas women. Relevant medical experts such as the Pennsylvania section of the American Congress of Obstetricians and Gynecologists (ACOG) and the Pennsylvania Medical Society strongly oppose this bill.

Under well-established constitutional standards, HB 1948 is quite clearly unconstitutional.

The Strange Debate About HB 1948

For a while, HB 1948 seemed to have stalled—like much business in the legislature. It took more than 270 days to finalize the 2015 budget—an impasse that forced dozens of nonprofit organizations serving rape survivors, domestic violence victims, hungry children, and the elderly to lay off workers and turn away clients.

But in April, Pennsylvania lawmakers whisked HB 1948 to the floor within 24 hours. Then, on June 21, the bill suddenly sailed through the appropriations committee and was rushed to the house floor for third consideration.

HB 1948 passed the house after the kind of bizarre, cringe-worthy debate that makes “Pennsylvania House of Representatives” feel like an insult to the good people of the state. Surely, Pennsylvanians can represent themselves better than elected officials who want to punish abortion providers, liken abortions to leeches, ignore science, and compare abortion regulations to laws restricting pigeon shooting. Surely, they can do better than the legislators who hosted the June 21 farce of a debate about a bill designed to force women to carry unviable pregnancies to term.

At that debate, primary sponsor Rep. Rapp stood for questions about HB 1948. But when Rep. Leanne Krueger-Braneky (D-Delaware County) began the debate by asking Rapp about what doctors, if any, were consulted during the drafting of the bill, Speaker of the House Mike Turzai (R-Allegheny) halted proceedings to consider if such a question is permissible. Also a co-sponsor of the bill, he concluded it was not, offering the explanation that legislators can inquire about the content of the bill, but not its source or development.

Rapp eventually stated she had many meetings while drafting the bill, but refused to answer with whom. She invoked “legislator’s privilege” and insisted the meetings were “private.” Legislator’s privilege is an esoteric provision in the state constitution intended to protect the process from undue influence of lobbyists, not shield lobbyists from public inquiry.

The bill’s language—referring to D and E by the nonmedical term “dismemberment abortion”—echoes legislation promoted by the National Right to Life Committee (NRLC). The NRLC has also drafted boilerplate 20-week bans, along with Americans United for Life, an anti-choice organization and a leading architect of the incremental strategy for building barriers to access safe and legal reproductive health care.

Next, Rep. Madeleine Dean (D-Montgomery) asked Rapp if similar bills have been deemed unconstitutional in other states.

Indeed, they have. According to Elizabeth Nash, senior state issues advocate at the Guttmacher Institute, similar D and E bans have been blocked in Oklahoma and Kansas, and 20-week bans have been struck down in Arizona and Idaho. HB 1948 is one of the first pieces of legislation to combine both provisions into one bill; at the Women’s Law Project, we call it a “double abortion ban.”

But no one in the chambers would know that these anti-abortion restrictions have been obstructed because, once again, Speaker Turzai halted the proceedings over these questions. This time, he stopped the debate citing the house rule that lawmakers cannot ask a question if they already know, or the speaker suspects they know, the answer.

In any case, so it went. Pro-choice lawmakers of the Women’s Health Caucus of the Pennsylvania Legislature spoke out against the bill, reading letters from physicians and sharing tragic stories of family members who died after being denied abortion care during severe pregnancy complications.

When Rep. Rapp was asked if she knew that many severe fetal abnormalities were not diagnosed until or after the 20th week of pregnancy, she responded that many were not diagnosed until birth, which misses the point: HB 1948 is designed to deprive women who receive a diagnosis of a severe fetal anomaly, even unviable pregnancy, at 20 weeks or later of safe and legal abortion.

That’s alright with Rapp and others pushing HB 1948; the bill contains no exemptions for fetal anomalies or pregnancies that were a result of rape.

The bill’s supporters didn’t refute allegations that if passed into law, it would negatively affect health care. They argued their case by invoking metaphors instead. They compared abortion regulations to laws about pigeon shoots. They compared fetuses to bald eagles and abortion to leeches. A white male legislator, a description unfortunately almost synonymous with “Pennsylvania legislator,” compared abortion to slavery, drawing the ire of Rep. Jordan Harris (D-Philadelphia).

“We use slavery references when it benefits, but won’t do anything about the systems that negatively affect their descendants,” tweeted Rep. Harris.

Democratic Rep. Dan Frankel, co-chair of the Women’s Health Caucus, attempted to put the bill into context by noting the barrage of abortion restrictions passed in Pennsylvania already. In addition to the ambulatory surgical facility requirement, the state already has a ban prohibiting women from purchasing affordable health insurance that covers abortion through the exchange; an arbitrary 24-hour mandated waiting period; and a Medicaid ban that allows federal funding of abortions only in cases of rape, incest, or life endangerment.

The house voted 132-65 in favor of the bill, mostly among party lines, though 25 Democrats voted for it and nine Republicans voted against it. Gov. Wolf has promised he will veto it if passes, while HB 1948 proponents are working to gather enough votes for an override if necessary.