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Last summer, when a finger prick yielded a high lead concentration in her 9-month-old daughter’s system, Catherine Nyberg held onto hope that it was a false positive.
A follow-up blood draw gave an even more nerve-racking result: Coco’s blood had 13 micrograms of lead per deciliter, more than twice the level considered to be harmful for her age.
Nyberg considers her family lucky that their pediatrician had called for a lead blood test at all. Her older daughter, at 4 years old, had never been tested for lead. Many of Nyberg’s friends divulged their children had never been prompted to get tested for lead, either.
In Hawaii, where testing for lead is recommended, but not mandatory, only about a quarter of all Hawaii toddlers are checked for dangerous blood lead levels, according to the Hawaii Childhood Lead Poisoning Prevention (HI-CLPPP) program. And the state’s lead prevention program is only in the beginning of its rebuilding, after being dormant for nearly 14 years until 2017.
“Really the number of kids who get tested is abysmal,” said Dr. Diana Felton, the state toxicologist with the Hawaii Department of Health Hazard Evaluation and Emergency Response Office. “The concern is we could be missing kids that are exposed to lead or have lead poisoning because they either aren’t getting screened or the questionnaire might not be capturing them.”
Cases of lead poisoning can go undetected for years until its effects on mental and physical development surface. Lead poisoning at any level is considered to be harmful because of the permanent damage it can inflict to the brain, nervous system, kidneys, and red blood cells. It can also lead to intellectual disabilities.
Infancy — when symptoms may be absent — is when it is most critical to catch lead exposure to prevent long-term effects.
Nyberg and her husband rummaged throughout their Kauai home for potentially toxic items. The doctors had asked, what did Coco put in her mouth? “Everything,” Nyberg thought.
For the next three weeks, the family was in the dark.
“It honestly felt like we were in a nightmare,” she said. “It was walking into the house and feeling like something was poisoning your child.”
Paint, jewelry, ceramics and even children’s toys may harbor lead paint in dust form. Lead dust is the most common form of lead poisoning among Hawaii children, not water.
Their house was built in 2005, so its paint wasn’t a concern, since lead paint was banned in 1978.
The Hawaii Department of Health was able to connect Nyberg with a lead expert from the Environmental Protection Agency, who flew to Kauai from California to test their house. Until this year, the DOH didn’t have lead detection equipment.
At last, they solved the mystery with the expert’s spectrometer gun: an enameled glass cloisonné jar that held the Q-tips they used to apply an oral medicine to Coco’s mouth. The antique they scored from a garage sale had higher levels than the instrument could measure.
“We may never have known that it was sitting there with poisoning lead dust,” said her husband, Ben Nyberg. “It was the highest he had ever seen.”
Hawaii’s lead prevention program remained dormant between 2003 and 2017 until it was revived by a $362,000, three-year federal grant.
There’s no way to measure the consequence of its absence.
Limited state data shows that, on average, about 1% of kids who are tested are found to have harmful blood lead levels each year.
In 2018, nearly 160 children age 6 and younger were found to have an elevated blood lead level of 5 micrograms per deciliter, according to HI-CLPPP. By September 2019, another 131 were identified. The worst year on record was 2016, when 234 children had an elevated blood lead level.
The average of 1% may seem small, but that’s because it’s based on a limited portion of the total population, experts say. Lead poisoning at any level can have harmful effects. Universal mandated testing would allow the program to know how prevalent the issue is and what forms of lead are the most common. They’d also be able to identify risks specific to the islands.
Currently, Hawaii policy recommends that doctors test people considered to be at risk for lead poisoning. The targeted approach is voluntary. It’s up to the parents and doctors to follow through, unless the child is covered by Medicaid, the federal insurance program.
Child beneficiaries of Medicaid are mandated by the federal insurance program to be tested. But even among that cohort, only about 40% of Hawaii’s Medicaid beneficiaries under the age of 6 are tested.
Those figures are likely overestimates, since some kids may be counted twice. DOH updated its surveillance software in 2017 to avoid duplicate data.
An analysis of testing results from each county found that children on the Big Island had a slightly higher positive test rate for lead exposure.
In the two years since the Hawaii Childhood Lead Poisoning Prevention Program has resurfaced, its three to four employees have been playing catch up by educating families, offering home visits, and collecting clinical testing data from local health centers.
Felton said the program has made swift progress by offering more free home inspections, and launching an electronic database for blood test results.
Last month, the Hazard Evaluation and Emergency Response Office purchased its first XRF lead detection gun, which looks like a bar-code scanner. The hope is the program won’t have to rely on generous Environmental Protection Agency colleagues to fly in from California to conduct investigations like the one in the Nyberg family’s home.
Program staff say they need data from more children to understand why Hawaii County’s rate is highest and to truly understand how many children with elevated blood lead levels could be missed.
“We haven’t even scratched the surface,” said Kelly Hoffman, the program’s former epidemiology specialist. “We aren’t going to see a true number until we get our testing levels higher.”
Hawaii will compete for federal funding again this year to keep the HI-CLPPP program running once its current funding expires this September.
Lead poisoning has generally fallen out of the public spotlight since the U.S. has made strides in lowering blood lead levels across the nation.
“One of the reasons why lead has gone to the back burner is it’s been an amazing public health success story,” Felton said. “We’ve seen population blood lead levels come down over time. But at the same time we’ve learned that lead has a lot more effects on the developing brain than we used to think.”
Ten states and the District of Columbia have moved to require universal lead testing. Hawaii is among 27 states which recommends testing, but doesn’t require it.
Senate Ways and Means Committee Chair Donovan Dela Cruz
“There are certain kinds of things that are easily preventable and this is one where the results are really bad,” said Sen. Karl Rhoads who introduced a bill this legislative session that would make lead testing universal in the islands.
Senate Bill 2637 would require kids to be screened once between 9 and 12 months old and again at 2 years. The bill passed the Commerce, Consumer Protection and Health Committee and is waiting to be heard by the Senate Ways and Means committee.
“The part that I’m concerned about, too, is that the poor kids bear the brunt of this problem,” Rhoads said.
Another reason for low testing rates for lead exposure could be because of financial obstacles faced by both doctors and parents alike, such as the cost of capillary machines and the time and money it takes to get laboratory results.
It’s also difficult to draw blood from infants.
“A past difficulty was the expectation that we had to do blood draws and a needle poke,” said Dr. Michael Walter, a veteran pediatrician at Kalihi Palama Health Center.
“When you’re doing lead screening on every child it becomes kind of a burden, and there’s insurance things, like who’s going to pay for it? There are a lot of gaps.”
The justification among doctors was that the risk for lead poisoning is considered to be low in Hawaii, so they’d only test if they had suspicions or if they saw symptoms, or later spotted a learning disability.
Walter recalled contacting the Department of Human Services to discuss difficulties complying with Medicaid’s Early and Periodic Screening, Diagnostic and Treatment protocol.
“The feedback we got was as long as you’re doing that questionnaire then it would be OK, but it never felt comfortable,” he said. “It wasn’t just us, it was everyone in the state. Past sentiment was it was acceptable to skip it, as long as doctors verbally screened families for risk factors.”
Things changed for Kalihi Palama when it got a grant for a capillary machine, empowering pediatricians like Walter to conduct finger blood tests in-office.
“That was a game changer,” he said, noting about 90% of all Kalihi Palama child patients are tested now. Out of about 100 tests it conducts each month, they catch two to five children with elevated blood lead levels.
In April 2018, DOH officially updated its guideline recommendations for lead testing and distributed it to providers like Walter, outlining specific protocol based on the blood lead level.
If universal testing is enacted by the Legislature, Hawaii would get a more “complete picture of the population and close the loop with follow-up home care,” Walter said.
Nyberg’s daughter Coco is more than a year and a half old now, and thanks to special nutritional care and removal of all lead-toxins in their house, her blood lead level has fallen to 3.7 micrograms of lead per deciliter.
“This took us by surprise and we’d hate for it to happen to anyone else,” Nyberg said.
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