Rita Swan received a Lifetime Achievement Award. Swan, who has a Ph.D., speaks and writes about child abuse and neglect related to religious or cultural practices. After losing their son in 1977 because of their faith in Christian Science, she and her husband left that church and became advocates for the rights of children to medical care. In 1983, they founded Children's Healthcare Is a Legal Duty (CHILD), a national nonprofit membership organization. CHILD disseminates information about ideological child abuse and neglect, opposes all religious exemptions from child health and safety laws, lobbies in support of rights of children to equal protection, and files amicus briefs in support of those rights. Swan earned her doctorate in English from Vanderbilt University.

Religion deadly for sick children

This speech was delivered on Oct. 9, 2015, at FFRF's 38th annual convention at Monona Terrace Convention Center in Madison, Wis., where Rita Swan was presented with FFRF's Lifetime Achievement Award. She and her husband Doug founded Children's Healthcare Is a Legal Duty (CHILD) in 1983.

By Rita Swan

Thank you for inviting me to speak to FFRF again. You've done so much good. It's heartwarming to see how you've grown.

My husband and I were devout, lifelong Christian Scientists until 1977, when we lost our only son Matthew to a treatable illness because we followed the church's beliefs against medical care. We left the church right after his death and have become nationally prominent advocates for protecting children from abuse and neglect related to religious beliefs and other strongly held belief systems.

Thirty-eight years and scores of national media appearances later, we remain the only people willing to speak publicly about the loss of their child because of Christian Science beliefs.
Before the Internet, it took us years to figure out that states had identically worded religious exemptions from child neglect charges, which appeared to give parents the legal right to deprive a child of medical care on religious grounds.

We learned that in 1975 the federal government had enacted a requirement that if states wanted federal money for child protection programs, they had to enact a religious exemption from child neglect statutes.

We fought this federal policy with over 50 letters to Congress and the administration. We went to Washington three times for meetings. The feds admitted to us that the Christian Science Church was the only party that asked for this remarkable policy.

In January 1983, the federal government rescinded the policy but didn't require states to repeal their laws. By 1983, every state except Nebraska had a religious exemption to neglect either in the civil or criminal code or both.

The U.S. Department of Health and Human Services (HHS) initially tried to require states to reduce the scope of the civil exemptions so that they didn't prevent investigation or court orders, but even that was soon quashed by Christian Science lobbyists.
The Louisiana Legislature passed a resolution condemning HHS and claiming that faith healing was twice as effective as medical care in healing diseases of children. When HHS withheld money to force change in California, the state sued rather than lifting a finger to change the laws.

Congress passed a temporary moratorium that stopped HHS from requiring any changes in neglect laws and then in 1994 passed this incredible law: "There is no federal requirement that a parent or guardian provide a child any medical service or treatment against the religious beliefs of the parent or guardian."

Actually, that's a masterpiece of political doublespeak because there's no federal requirement that parents do anything for children. Child abuse and neglect laws are state laws, and the federal government influences state laws only by the power of funding. But HHS has not raised any concerns about religious exemptions since the federal law was passed in 1994.

State by state

So we have been left with the herculean task of repealing religious exemptions state by state. When we first started, we thought we'd get all the religious exemptions repealed and could then work on other social justice causes. But as this frustrating and laborious work dragged on for decades, we reduced our expectations.

For the last several years, we have placed the highest priority on repealing religious defenses to negligent homicide and manslaughter. Even that looks like it will take a great many years. There are eight states that have religious defenses to negligent homicide or manslaughter.

The state of Washington, reputed to be the most secular state in the nation, has this religious defense to felony child endangerment and second-degree murder: "It is the intent of the Legislature that a person who, in good faith, is furnished Christian Science treatment by a duly accredited Christian Science practitioner in lieu of medical care is not considered deprived of medically necessary health care or abandoned."

Let me back up for a minute and explain what Christian Science treatment is. Founder Mary Baker Eddy envisioned her religion as a health care system. She called her faith healers "practitioners," their prayers "treatments" and those they pray for their "patients." Practitioners send bills for these treatments, and the church is constantly trying to get reimbursement from third-party payers.

The church also has other workers called "nurses," who are not licensed by the state, have no medical training and do not work under supervision of state-licensed personnel. These nurses cannot take a pulse or use a thermometer. They will not do even simple nonmedical procedures to relieve suffering or discomfort, such as using heat or ice on a painful area.

So with no discussion, the Washington Legislature enacted this law saying that a child sick with any disease whatsoever is not deprived of health care if a Christian Science practitioner is praying for him. Washington has declared that prayers by one religion are medically necessary health care for a child with type 1 diabetes, bacterial meningitis or cancer.

Frustrated in Iowa

Our most frustrating work was in our home state of Iowa, where we lived for 29 years. We lived where the Missouri River meets the Big Sioux River, where South Dakota, Nebraska and Iowa come together. We got five religious exemptions repealed in South Dakota, but Iowa was just impossible.

Although Iowa had a religious defense to manslaughter and felony child endangerment, we could not persuade the majority of legislators there was anything wrong with that.
One year, I made nine trips to Des Moines to lobby for repeal. We were greatly handicapped by living 200 miles away and being a one-car family. On Sundays, I would ride to Des Moines with a legislator, trudge up and down the hill to the Capitol in snow and bitter cold and on Thursday catch an all-night bus back to Sioux City with a several-hour layover in Omaha. My husband would meet me at 6 a.m. with a pillow and I would sleep in the car the rest of the way home.

It was hard for legislators to understand our position, and most prefer to avoid work if they can. Why did I want to make criminals of parents who had done what I did? "Your son didn't die in Iowa, did he?" one asked. One could rephrase that: "We don't have bacteria in Iowa, do we?" "Your experience is unlikely to happen in Iowa," another said.

While Iowa had several outbreaks of vaccine-preventable disease because of religious exemptions, we knew of only two deaths in faith-healing sects. Both were newborns. One died of a cerebral hemorrhage, probably preventable with a vitamin K shot, the other of Rh factor incompatibility, preventable with the RhoGAM shot. The bereaved grandparents were CHILD members whom I persuaded to go public.

Even they could not persuade enough legislators to get a bill passed. The deaths of these infants shortly after birth were not dramatic enough to motivate legislators.

It was very emotionally painful for me to carry around the story of our son's death and have legislators be indifferent, evasive and break promises.

More than anything else, I regretted putting the grandparents through the ordeal of going public. It was very hard on them. It wrecked their relationships with their children and grandchildren in the faith-healing sect. One son and his wife hid their next pregnancy and birth from them, preventing them from intervening to save the baby if there had been a health emergency.

Shining star Nebraska

But there was always Nebraska to lift my morale. Just across the Missouri River was the one state that had never had a religious exemption from medical care of sick and injured children. Nebraska's only religious exemption relevant to children is from immunizations.
As many of you already know, the reason Nebraska is the shining star on this issue is Sen. Ernie Chambers. He is a predictable, consistent, tenacious opponent of religious exemptions. He filibusters for hours and threatens filibusters. During the eight years when the federal government coerced states through the power of funding to enact a religious exemption to child neglect, Ernie managed to stall the Legislature and administration until the feds abandoned their policy.

Ernie has brought the administration in a conservative state along with him. The Health Department strongly supports requiring preventive and diagnostic measures for all newborns without exception. Thanks to Ernie, Nebraska is one of only four states to require metabolic testing of all newborns and the only state to have an enforcement mechanism. The other three — Montana, West Virginia and South Dakota — have laws requiring the test for all newborns but no penalty for breaking the law.

Religious objectors have sued Nebraska in state and federal courts. One family had religious beliefs against withdrawing any blood from the body. Church of Scientology parents believed in what they called "silent birth." The baby should not be exposed to any discomfort, noise, language or other strong sensory data for at least 10 days because it will get recorded in what Scientologists call the reptilian brain. The individual will have strong fear and tension when he encounters those words or other triggers throughout the rest of his life. Scientology founder L. Ron Hubbard claimed that silent birth is necessary to save the "sanity" of mother and baby.

Scientology parents were willing to have the blood drawn for metabolic testing after the baby was 10 days old. Every other state would have thought that was fine, but not Nebraska. The optimal time to do the test is before the baby is 48 hours old. That was Nebraska's law, and the state attorney general did not hesitate to defend it in federal court. The law was upheld.

After losing in the courts, the religious objectors went to the Legislature. Our handful of Nebraska CHILD members and I made trips to Lincoln to testify against bills creating a religious exemption for metabolic screening. Nebraska has a one-chamber Legislature in which bills can move pretty fast. Once an exemption bill had passed committees and was scheduled for a final vote on the floor, I called Ernie Chambers. Fortunately, he still had not been term-limited out of office. Within a few hours, his staff called back and said not to worry — it had been taken care of. Ernie threatened a filibuster the next day and the bill was withdrawn.

Criminal penalties needed

We don't regard our work to repeal religious exemptions as intrinsically punitive. To us it's a simple matter that parents have a duty to provide a child with the necessities of life, and the only way society can establish a duty in law is to provide a penalty for not performing a duty.

That's true for everything from running a red light to murder. Few of us would put money in the parking meter if there weren't a penalty. The ultimate purpose of the criminal code is deterrence. It is our hope that clear laws which apply to everybody will change behavior.

Though it would seem like madness to you, many parents in the faith-healing sects do not comprehend the risk they're taking with their child's life when there's a state law allowing them to withhold medical care. They perceive exclusive reliance on religious ritual to be not only legal but safe when the state endorses their behavior.

The Christian Science Church in particular has told its members that legislators give them religious exemptions because legislators agree that Christian Science heals disease just as well as medical science does.

Followers of Christ

The power of the law to change religiously motivated behavior is most dramatically illustrated by our work in Oregon. In Clackamas County, there's a group called the Followers of Christ opposed to medical care. Year after year, they buried children, but the county coroner didn't refer the deaths to law enforcement and barely even examined the children.

Later, a medical examiner system was established. The medical examiner's staff did forensic autopsies on children that would stand up in court. He always took their findings to the district attorney, but the DA did nothing with them, citing religious freedom and the laws that Christian Scientists had lobbied to get passed. By 1997, the church had gotten religious defenses to homicide by abuse or neglect, manslaughter, criminal mistreatment of dependents, criminal nonsupport, neglect and failure to provide necessities.

In 1998, I spoke at a national conference about Oregon laws. A new district attorney came up, saying she wanted to do something about the faith-healing deaths in Clackamas County. In a seven-month period, three Followers of Christ children had died of readily treatable illnesses: sepsis from a strangulated hernia, kidney infection and diabetes. The district attorney concluded she could not file any charges, but she did alert the press.

Media went to the Followers of Christ cemetery and found 78 children buried there. The public was outraged. One of our Oregon CHILD members asked his legislator to sponsor a repeal bill. The legislator introduced a bill in 1999 to repeal all nine religious exemptions pertaining to medical care of sick and injured children.

The Christian Science Church fought us tooth and nail for seven months. Some 75 amendments were proposed. We finally got a bill passed that repealed five of the nine.

We hoped that would be enough to change the Followers' behavior, and for several years it seemed that it had. But in 2008, the deaths started up again.

We decided to try to get the remaining four exemptions repealed. The legislator again agreed to sponsor the bill. Because it had been such an exhausting fight in 1999, we decided to move to Salem to help him. When the church found that we were living in Salem, they gave up and said they would not oppose our bill because the deaths in Oregon had reached "a critical mass." Seventy-eight dead children were not a critical mass, but 82 were.

Our bill sailed through almost unanimously, and there has not been a Followers of Christ child die of medical neglect since 2009, not even in one of their unattended home deliveries. Oregon is one of six states with no religious exemption for care of children.

Many Idaho deaths

The most urgent need for legislative reform now is Idaho, which has four or more Followers of Christ congregations. State law allows parents to withhold lifesaving medical care from children, so criminal charges are never filed. One coroner doesn't even do autopsies on Followers' children because Idaho law requires autopsies only when a crime is suspected. Some families have reportedly moved from Oregon to Idaho since Oregon eliminated its exemptions.

In the Peaceful Valley Cemetery owned by the Followers of Christ, 35% of the graves are of minor children or stillbirths. Statewide, only 3% of Idaho deaths are of minor children or stillbirths.

Though the deaths go back as far as 1924, 149 of the 206 graves of minors occurred after Idaho enacted religious defenses to criminal injury and manslaughter. This death sentence for so many was passed by the Legislature with no discussion.

We are working hard for repeal in Idaho but to date haven't gotten even a committee hearing.

Tax write-offs

Turning to another subject, we want to thank the Freedom from Religion Foundation for co-signing our petition to the Internal Revenue Service asking that they stop recognizing bills for rituals and prayer as a deductible medical expense. Since 1943, the IRS has allowed bills that Christian Science practitioners submit for their prayers to be deducted from income taxes as a medical expense.

The amount of money at issue is not as significant as the fact that the policy has been used to bolster lobbying for religious exemptions from child neglect laws. Two states even have laws explicitly allowing those whose prayers are deductible medical expenses to deprive their children of medical care. We hope to hear something from the IRS about this early next year.

Finally, we would be grateful if you would write or call your U.S. House and Senate members to state your opposition to bills that give religious objectors an exemption from purchasing health insurance. The House bill, H.R.2061, recently passed the House by voice vote. A companion bill, S.352, sponsored by Sen. Kelly Ayotte, R-N.H., is in the Senate Finance Committee.

The Congressional Budget Office estimates these bills will cost the government $1.24 billion over 10 years. The more people exempt from insurance pools, the more premiums will go up for the rest of us. We believe that at least some of those children in Idaho would have gotten medical care if their parents had been required to buy health insurance for them.

Go to childrenshealthcare.org and to idahochildren.org for more information.