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Despite progress, an uncertain future in Alaska's battle against fetal alcohol spectrum disorders

Kyle Hopkins

John Binkley can't remember why he was touring Alaska's largest hospital that day in 1989, but he'll never forget what he saw there.

A 16-month-old child, no bigger than a newborn, lay silently crying in the neonatal intensive care unit at Providence hospital in Anchorage.

Binkley peered into the crib. The baby's eyes were covered with cloth because of his sensitivity to light, Binkley recalls. No one held the boy because he couldn't stand human touch. He had a feeding tube to eat and a ventilator to breathe.

The baby's face contorted beneath his breathing mask, Binkley saw, but no sound escaped. The nurses predicted he would die by age 4.

At the time, even many doctors knew little about fetal alcohol syndrome. Binkley, a Republican state senator representing the Western Alaska hub of Bethel, began to suspect it was a much bigger problem than he had imagined.

"This was the third or fourth fetal alcohol syndrome baby that the (same) mother had given birth to," he said. "And she was pregnant again. And drinking again."

He was told no family ever visited the child. "It just broke my heart to look at that baby and to think that we as a society somehow allowed this to happen," Binkley said.

When he returned to the state Capitol, Binkley filed a swarm of bills.

He proposed legislation calling for bars and liquor stores to post highly visible signs warning of the dangers of pre-natal alcohol exposure, to make FAS training mandatory for Alaska teachers, and more.

Child advocates welcomed the changes in state policy.

Congress had already set aside more than $500,000 for the first treatment center for pregnant Alaskans struggling with alcoholism.

Seven hundred miles north, the North Slope Borough had hired a young woman to teach expectant mothers -- along with their husbands and boyfriends -- about the dangers that alcohol posed to an unborn baby.

The statistics began to improve.

"Alaska Native clinics have done a great job of screening women, of identifying them early, getting them the services and help they need before they are pregnant or early in the pregnancy," said Diane Casto, who oversees FASD prevention efforts for the state health department.

It took little more than a decade for Alaska to slash its sky-high fetal alcohol syndrome rates, reducing the number of children born with the lifelong birth defect by a third. Using a $29 million federal earmark the state seeded FASD diagnostic clinics across Alaska to identify children and teens with the disability, and launched TV ads warning expectant mothers of the risk.

Between 1996 and 2002, the number of Alaska Natives born with the birth defect dropped an astounding 64 percent, according to the best available research.

Maybe you've already heard that good news, trumpeted by the state in news releases. "This reduction is what we've been striving for," then-Health Commissioner Bill Hogan said in 2010.

While FASD experts and trainers who worked most closely with children were skeptical that declines were as large as advertised, everyone agreed that significant progress had been made.

The state had become a leader in nationwide FASD prevention.

"Alaska knows more about what's going on in their state than probably any other state out there," said Kathy Mitchell, vice president for the national prevention group NOFAS.

Yet Alaska has also missed many opportunities to build on that success.

The state was the beneficiary of the largest federal earmark ever to fight the disability, but policymakers, health care providers and educators failed to take certain common-sense steps to prevent more damaged babies from being born and to help those who already have it.

'ALL OVER AGAIN'

Among the ongoing problems:

• Most of the state-subsidized diagnostic teams have vanished. Only six of the original 17 remain and none is based in rural Northwest Alaska hub towns like Nome, Barrow and Kotzebue, where rates are the highest.

• Diagnosis is key to helping children with FAS or other fetal alcohol spectrum disorders navigate school and stay out of trouble. Yet the state does not track how many kids in its care have the disability so that decision-makers and budget writers can clearly measure the extent of the problem.

Not in schools, not in the juvenile jail system and not even at the Office of Children Services. (OCS, which removes children from dangerous homes, paid $14.4 million to subsidize the adoption of special needs children last year alone.)

• As FAS rates among Natives dropped, the disability rate among non-Natives began to rise. The number of non-Native women who say they drank while pregnant has increased in six of the past nine years, according to the Alaska Bureau of Vital Statistics.

Now FAS rates are in danger of growing again. In other words, Alaska is less equipped to notice the problem, let alone fix it, than a decade ago.

The millions in federal money, won by the late Sen. Ted Stevens before "earmark" was a dirty word, is now gone. Alaska still has the highest known rate of the disability, which makes life harder, in countless ways, for thousands.

People born with FAS or another FASD are more likely to be the victims of rape and suicide, more likely to struggle to find jobs and spouses. Some will never be able to care for themselves, while the more severely afflicted will costing the public millions of dollars over the course of their lifetimes.

The problem returned to prominence this year in Juneau, with Senate Finance co-chair Pete Kelly announcing he and a like-minded think tank would seek to eradicate the disability altogether. He said they hoped to launch a $5 million media blitz to make it happen.

State prevention experts are waiting to see how those efforts will fare, and whether the steep decline in FAS rates was a permanent drop or a temporary reduction fueled only by concentrated government spending.

"We should never think we're done," said Northwest Arctic Borough Mayor Reggie Joule, who sought increased prevention efforts as a Kotzebue legislator. "When we think we've succeeded, it brings us down the road of probably having to deal with it all over gain."

Here is what Alaska has done to become a leader in stopping fetal alcohol spectrum disorders, and where opportunities were missed.

DOOR-TO-DOOR

Not long before Binkley's hospital visit, work to reduce fetal alcohol syndrome births in Barrow had already begun. In Alaska's northernmost town, a newly sober 20-something named Ellen Sovalik began driving to the homes of pregnant women. She knocked on doors from the dark of winter through late-night summer sun. Always invited. Always waiting in the Arctic entry of another wind-burned tundra home to be welcomed inside.

Her previous job had been cleaning the hospital as a janitor. Sovalik was nervous about her new job, she remembers.

"I was brought up to respect my elders, not to argue or talk back and -- mostly -- how I am not to tell them how to live their lives," she said.

Working for the North Slope Borough and paid by the state of Alaska, Sovalik told Barrow families about FAS, she said. How alcohol can cause lifelong brain damage and reform a child's face, even before a mother knows she's pregnant.

She quickly learned that some of the women most at risk of drinking while pregnant never showed up for their prenatal visits.

Sovalik began ferrying mothers to the doctor's office herself, arranging follow-up visits to their homes to talk about drinking and pregnancy. The mothers listened in silence. Sovalik made sure their husbands and boyfriends -- often a drinking partner whose support would be crucial during the pregnancy -- heard the message too.

"I was gentle. I gave the facts. I didn't point fingers," Sovalik said.

She later became the borough health director. She is now a tribal court judge.

"I wasn't too sure if I was being effective because they were so quiet about it -- until I started getting phone calls shortly after from some of the men," she said. The husbands told her they had curbed their own drinking but were worried their wives might not be able to stop.

She soon took her message outside of Barrow, Sovalik said, visiting remote whaling villages across the North Slope, talking to middle and high school students about pregnancy and alcohol. Sometimes she saw the telltale facial features of FAS -- the flat upper lip, the small eye openings -- looking back at her.

NEW LAWS

In Juneau, Binkley continued to push for more anti-FASD laws. The most controversial called for involuntarily committing a pregnant woman who was drinking and wasn't likely to stop.

That bill failed under withering opposition from opponents who said it violated the rights of women and could set a precedent for outlawing abortion.

Binkley said he wasn't thinking about those things. "It sounded reasonable to me. We commit people to institutions for all kinds of things."

While that proposal never reached a vote, many others became law, including:

• Mail-order shipments of alcohol within the state must include a brochure on fetal alcohol syndrome. Anyone applying for a marriage license also must receive the brochure.

• In an expansion of an earlier law, bars, liquor stores and restaurants must display 11-by-14-inch signs that drinking while pregnant can lead to birth defects.

• State-funded treatment centers must give priority to pregnant women.

Binkley proposed that last item in January 1991. In August, a former two-story apartment building in Fairview became the first treatment center in the nation focused on pregnant women.

In Fairbanks, University of Alaska professor Judith Kleinfeld noticed friends struggling to care for adopted children with FAS. Soon she was talking to more parents with the same problem. In 1993, Kleinfeld published "Fantastic Antone Succeeds," a book of case studies of Alaska parents and teachers finding ways to endure the unpredictable meltdowns and lost logic of children with FAS.

"I was concerned about whether anything could be done with the children, because they were so clearly damaged and they were getting into so much trouble: shoplifting, sexual touching of minors," Kleinfield said. She described simple solutions like clearing away the clutter in a child's room and lowering the lights.

She checked back with the same families several years later.

"Instead of their problems fading, they multiplied," she said.

A WINDFALL ARRIVES

Researchers started looking closely at how much pregnant women in Alaska drank. The results were scary.

In 1993, about 16 percent of all women admitted to Alaska Regional Hospital for labor and delivery drank alcohol or used illegal drugs just before giving birth, the Alaska Neonatal-Perinatal Research Foundation found.

Yet few people were talking about the disability. When FAS made the headlines, it was for worst-case scenarios -- crimes committed by people believed to have the disability, but maybe also affected by childhood trauma.

A 25-year-old Fairbanks man who suffered from FASD, according to Associated Press accounts at the time, began serving a life sentence for killing his 2-year-old nephew while trying to force the toddler to perform oral sex.

A member of the governor's advisory board on drug and alcohol abuse in Alaska, Joule had heard the horror stories. He had also heard hopeful tales of individual teachers connecting with affected students.

Joule and a fellow state representative, Fred Dyson, R-Eagle River, approached the state health commissioner in 1997 and asked what Alaska was doing to stop fetal alcohol syndrome, Casto remembers. The answer was not much.

Health Commissioner Karen Perdue, a former aide to Stevens, raised the issue with him. Stevens had pushed for federal spending on Indian Health Service studies of FAS among Alaska Natives in previous years.

In 1999, already chairman of the Senate Appropriations Committee and approaching the height of his pork-barrel powers, Stevens added $29 million into the federal budget to target FAS in Alaska for five years.

Calling the epidemic "an Alaska problem of immense proportions," Stevens told the Daily News he had been concerned about FAS for more than a decade and had cut back his own drinking as he learned more about the problem.

"I don't drink hard liquors any more," he said. "And we refuse to have them at receptions in rural areas. We've got to understand the relationship between alcohol and near depression and alcohol and the boredom of rural life."

At first, no one knew what to do with all the federal money, said Casto, who by then was head of the a new state Office of FAS. Opening treatment centers for pregnant women sounded good, she said, but what would happen when the cash dried up?

For some pregnant women, simply knowing the dangers was enough to stop drinking. The state launched a $1 million ad campaign to spread the word, Casto said.

The audience was not just pregnant mothers and their families, Casto said, but doctors who saw nothing wrong with exposing a fetus to alcohol, or didn't see talking to women about it as their job.

A massive diagnostic effort began in 2000. The state created teams -- from Sitka to Barrow, Fairbanks to Bethel -- to screen for children with the disability. Seventeen were funded.

Deciding whether a child has FAS or another, less visible but equally devastating fetal alcohol spectrum disorder, is no easy task. Each team includes a speech therapist, doctor or nurse and a psychologist, among others.

Using Stevens' earmark, the state handed each of the new teams more than $100,000 in the first year of the program.

The money was scheduled to decrease a little each year. The idea, Casto said, was to pay enough to start them, but encourage teams to find other ways to fund the diagnoses long-term.

Some of the diagnostic teams flourished.

Groups in Kenai, Bethel and Anchorage have tested hundreds of children and teens, giving foster parents, teachers and judges a better idea of why a child might act out and how to help them.

Others took the money and held meetings, but never submitted a completed diagnosis, according to state health department records.

The large northwest region of the state that includes Barrow, Nome and Kotzebue has the highest FAS rates in Alaska -- nearly twice as high as Southwest Alaska and four times that of Anchorage.

The Barrow diagnostic team completed only one diagnosis before disappearing. The Nome team finished two and the Kotzebue diagnosis group did not complete any, according to an analysis by University of Alaska Anchorage behavioral health researchers.

"Barrow, we gave them team development money. They did training. They never were able to get off the ground," Casto said. "... Community readiness was a critical issue. People didn't want to talk about it and they didn't want to make referrals to the team."

Sovalik, the former borough health director who visited Barrow homes to talk to women, said the local diagnosis team was composed of outsiders -- professionals visiting the town who didn't stay. Sovalik said she suspects the high FASD rates in northwest Alaska show that hospitals there were better than larger communities at flagging the disability.

'ARE YOU PREGNANT OR JUST FAT?'

A second push for anti-FASD laws came in 2006, when a bill proposed by Rep. Bruce Weyhrauch, R-Juneau, again proposed involuntary commitment for pregnant women who can't stop drinking. It also proposed a fund to pay for their treatment.

Another provision called for a bartender who knowingly serves alcohol to a pregnant woman to pay a lifetime's worth of Permanent Fund dividends as punishment.

The Alaska Cabaret Hotel and Restaurant and Retailers Association -- a statewide liquor lobby trade group -- fought back in Juneau. The association's chairman, Darwin Biwer, credited the industry with killing the proposal, which he called the "Are you pregnant or just fat?" bill.

"... Because of CHaRR, that's a bill that didn't happen," Biwer wrote 2012. He did not return a call from the Daily News to talk about that effort.

Casto says other new efforts are underway. The state is seeking case managers to work in rural areas with people with the disability. In 2012, the Legislature voted to allow judges to reduce the sentences of people found guilty of non-violent crimes if they have an FASD and that played a role in the crime.

These days, the diagnostic effort is flagging. Only six clinics remain, and they are on pace to complete fewer diagnoses this year than any year since the original earmark.

Alaska FASD experts are hopeful that the Legislature's renewed interest will reverse that trend. A dormant diagnostic team, once run by Central Council Tlingit and Haida in Juneau, may be revived, Casto said. Officials in Nome have talked about resurrecting their team.

Even in cities with active teams, treatment isn't always available for children diagnosed with FASD. A diagnosis doesn't help much if there is no treatment or way accommodate the disability in classrooms.

LOSING TRACK OF CHILDREN WITH FASD

FASD is about as common in the U.S. as autism. It's one of leading causes of mental disability in the Western world.

The Anchorage School District, charged with teaching more than a third of all Alaska children, lists 13 possible "impairments" that may make a child eligible for special education.

Fetal Alcohol Syndrome and FASDs are not one of them.

"The School District could do more," Casto said. Parents tell her that teachers -- even some special education teachers -- seem to know little about the disability despite mandatory training.

The key is identifying children with the disability early and avoiding labeling them as troublemakers rather than disabled students.

Chris Fraczek, coordinator for disability and mental health at the district, said the schools focus on identifying individual symptoms of FAS, for example, attention deficit disorder, and then accommodating those disabilities in a learning plan if necessary.

Of Alaska children diagnosed with FASD, about 1 in 4 was referred by the Office of Children's Services, a 2006 UAA study found. About 1 in 3 of the children diagnosed for FASD live in OCS custody, the researchers found.

Surprisingly, the child protection agency does not systematically track which children in its care have an FASD, or which children were referred for diagnosis. "It's in files, absolutely, but it's not" being aggregated, Casto said.

The state Division of Juvenile Justice, which runs eight youth prisons, doesn't know how many of its inmates are diagnosed with or suspected to have an FASD. The Corrections Department, which jails 36,000 adults each year, doesn't know either.

A bipartisan crime bill approved this year by the Legislature calls for the department to look for FASD specifically when screening new inmates.

Shannon Cross-Azbill, clinical director for the Juvenile Justice Division, said earlier this year she hoped to have clinicians begin reporting whether children in Alaska jails are suspected of having been prenatally exposed to alcohol. That could be a simple as adding a new box to check on state paperwork.

"We suspect the numbers are pretty high," Azbill said. Canadian censuses show that "anywhere from 50 to 70 percent of incarcerated folks are prenatal exposed."

ONLY TIME WILL TELL

For now, state officials are waiting to see if the steep reduction in FASD rates will persist.

Phil Mattheis, a Kenai doctor whose team has diagnosed more children with FASD than any team in the state, said he's starting to see familiar faces at his clinic for potentially alcohol-exposed boys and girls.

"Women who I saw 15 years ago and gave a diagnosis are now showing up with kids," he said.

When Sen. Kelly this year announced his fledgling anti-FASD think tank, "Empowering Hope," he said its focus would be on prevention.

"The fact is, in this world, there's almost no hope for people with FASD. You have altered the brain in such a manner that they cannot think in the way that we do," Kelly said. "There's no medicine. There's no surgical procedure and there never will be. ..."

But what of those thousands of FAS and FASD children who were born two decades ago, at the recorded peak of Alaska's rates? Babies like the one John Binkley saw in 1989, who, if he had lived, would be 26 or 27 years old today, and maybe starting a family of his own?

Coming in Sunday's paper, meet a family of six adult children with FASD and the single, adopted mother who is helping them find their way.

Twitter updates: twitter.com/adn_kylehopkins. Call Kyle Hopkins at 257-4334 or email him at khopkins@adn.com.

About State of Intoxication

The State of Intoxication series is a year-long reporting project examining the social costs of alcohol use and abuse in Alaska. The series is controlled and directed by the Anchorage Daily News. It is financially supported, in part, by a grant from the Recover Alaska Media Project fund at the Alaska Community Foundation. Contributors to the fund are the Alaska Children's Trust, the Alaska mental health Trust Authority, Bristol Bay Native corp., the John S. and James L. Knight foundation, Providence Health & Services alaska, the Mat-Su Health foundation, Wells Fargo and the Rasmuson Foundation.What separates FASD from FAS?

FASD stands for fetal alcohol spectrum disorders, an umbrella term that refers to a variety of disabilities and birth defects caused by a mother's alcohol consumption while pregnant.

FAS stands for fetal alcohol syndrome, a specific medical condition that includes a trio of distinct facial features, undersized height and weight and damage to the central nervous system. It easier to diagnose but not necessarily more severe than less visible fetal alcohol spectrum disorders.

Special project: State of Intoxication -- Alaska and Alcohol
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By KYLE HOPKINS
khopkins@adn.com