Zack Harold

freelance journalist

Affliction of the Innocents

This story originally appeared in the September/October 2015 issue of West Virginia Focus magazine.

The halls at Lily’s Place, an old Huntington podiatrist’s office turned infant drug withdrawal center, are almost noiseless. For drug-affected newborns, almost any kind of stimulus is unbearable. “Sometimes just talking to them is too much stimulation,” says clinical care manager Rhonda Edmunds. The nurseries are kept dark. There are no bright colors. Only more advanced patients can tolerate mobiles over their cribs. Staffers walk softly and speak in hushed voices. So it is especially jarring when a baby’s wails cut through the quiet.

It’s true what they say about the cries of infants exposed to hard drugs in utero. They sound different from the cries of a healthy baby—shriller, more pained and desperate. It’s becoming an increasingly common sound in West Virginia maternity wards.

As drug abuse continues to climb in West Virginia, so does the number of pregnant users and the number of newborns exposed to these harmful substances. In 2009, the West Virginia Perinatal Partnership conducted a study of umbilical cord blood from 759 babies at eight hospitals around the state. Researchers found nearly 1 in 5 of the infants tested positive for marijuana, opioids, alcohol, or other “significant substances”—and most of the affected babies tested positive for more than one substance. There have been no follow-up studies to show whether those numbers have changed, but speaking with medical professionals it’s clear the problem is only growing worse.

Before she helped open Lily’s Place in October 2014, Edmunds worked at the Neonatal Intensive Care Unit at Cabell-Huntington Hospital. Drug-affected babies, she says, took up more than half of the 36-bed unit. The hospital eventually had to create a separate 12-bed unit for babies with Neonatal Abstinence Syndrome, the medical name for infant drug withdrawals. It wasn’t long before the new unit was also filled to capacity. On a recent day, there were 22 babies in the unit. That’s why Edmunds and co-founders Mary Brown and Sara Murray launched Lily’s Place: to free up space in the hospital and get the babies out of the hospital environment.

Dr. Stefan Maxwell, chief of pediatrics Charleston Area Medical Center’s Women and Children’s Hospital, has also watched as babies suffering from Neonatal Abstinence Syndrome (NAS) skyrocket at his hospital, and says all 30 birthing hospitals in the state are seeing similar increases. Kelly Crow, manager of Labor and Delivery at Raleigh General Hospital, told a local news station in April that one in three babies born at her hospital are drug-affected.

Medical professionals generally avoid the term “drug-addicted” when referring to infants. Because addiction is both a physical dependence and mental illness, it’s more appropriate to say they are “drug-affected” or “drug-dependent.” “The babies are not necessarily born addicted. They have been exposed to narcotics and are therefore going to have a withdrawal syndrome when that drug is taken away,” Maxwell says.

But no matter the preferred terminology, these babies are extremely difficult to treat. As Edmunds explains, opiates like heroin and prescription painkillers restrict the flow of dopamine to fetuses’ brains. This leads to problems in the central nervous system, which causes excessive crying, tremors, and sometimes seizures. It also affects the autonomic system, which can lead to excessive sneezing and yawning, and the gastrointestinal system, causing vomiting, diarrhea, and severe gas.

Medical professionals have to treat these symptoms while also weaning the babies off the substances causing the symptoms. The infants can’t be weaned too fast, however, or else the withdrawals might exacerbate their condition. Some of the tiny patients are released after a few weeks. Maxwell has treated babies for as long as three months.

The good news is, Neonatal Abstinence Syndrome is entirely preventable. Mothers just have to stop using drugs—which, of course, is easier said than done. Maxwell has some ideas, however. He would like hospitals to screen expectant mothers for drugs early in their pregnancies. Hospitals would refer users to treatment, in an attempt to get them sober as quickly as possible. “So the baby is not as badly affected in the end,” Maxwell says. He says it’s important to get mothers off drugs by their second trimesters. Any later, and withdrawal symptoms might do additional damage to the baby.

It’s a good plan, but there’s a problem. The screening tests would cost lots of money and no one—hospitals, health insurance companies, the government—is quite ready to pony up the cash. Maxwell, who also serves as chairman of the West Virginia Perinatal Partnership’s central advisory council, has an idea to tackle this problem, too. He believes if he can show how much money Neonatal Abstinence Syndrome is costing society, the government will be more willing to fund prevention efforts. “Until you can show the government what it’s costing them, you can’t expect them to spend money on programs,” he says. “If we can collect accurate data, we can then put an estimate on the cost of this problem to society.”

At the moment, there’s no good way to estimate the cost of neonatal abstinence syndrome. Maxwell says it’s probably around $40 million per year in West Virginia but that figure is “based on a lot of supposition.” Medicare data would be the best way to collect information, but because of the way medical coding works, there are myriad ways for physicians to classify pregnant, drug-using patients and their babies. The information is scattered all over the place.

So beginning this fall, Maxwell and his colleagues at Cabell Huntington Hospital and West Virginia University’s Ruby Memorial Hospital will begin making rounds to hospitals around the state, trying to get obstetricians to use a standard set of billing codes for Neonatal Abstinence Syndrome and related conditions. “If we can have everybody on the same page within 6 to 10 months, by spring of next year I think we will have accomplished something,” he says. “Once the codes are put in, the (state Department of Health and Human Resources) collects all that data. Medicare will have an idea of how much money they are spending.”

Maxwell says it will be easier to ask state lawmakers to fund prevention efforts once solid statistics are available. “We can say ‘Here’s a program that works, here’s what it costs.’” With the right programs in place, he says West Virginia could cut the number of drug-affected infants in half by 2020. “I think it’s realistic.”

The Forgotten Disease

This story originally appeared in the January/February 2016 issue of West Virginia Focus magazine.

For a time, it seemed black lung was headed the way of smallpox and polio. When Congress passed the Federal Coal Mine Health and Safety Act of 1969, about 35 percent of coal miners with 25 or more years on the job were diagnosed with coal miners’ pneumoconiosis, the disease’s official name. But once the federal government established dust limits for mines, black lung rates began a steady decline that would last for three decades. By 1999, only 5 percent of workers with 25 or more years of service had the disease.

Then the numbers stopped dropping. “It kind of looks like we hit a brick wall,” says Anita Wolfe, public health advisor at the National Institute for Occupational Safety and Health (NIOSH). “For some reason we started noticing the little lines on the graph were starting to go up again. Now they’re back to about 10 percent.”

The folks at NIOSH were perplexed. “This should be a disease that is gone,” Wolfe says. “This should be a disease we should not be seeing anymore.” The agency created a mobile testing unit, visiting different mining communities around the country for in-depth medical screenings and interviews with miners. Their findings were worrisome. New black lung patients were younger than in the past, and the disease seemed to progress faster than it once did. “Instead of it taking 20 years to go from (the early to late stage), some of them were progressing in as little as seven years,” Wolfe says.

Although researchers have not pinpointed the exact causes, there are a few possible explanations for the recent resurgence of black lung and the disease’s newfound aggressiveness. The coal seams mined today are thinner than in the past, so machines cut into lots of rock as well as coal, and rock dust can be even worse for miners’ lungs than coal dust. NIOSH is also seeing more black lung cases in mines with fewer numbers of employees— operations that often have older, dustier equipment and do not have robust safety programs like those at larger mines. Employees also tend to work longer hours than in the past and, as a result, inhale more dust.

Black lung is a brutally simple sickness. “It’s not rocket science,” Wolfe says. “The way you get black lung disease is, you breathe in coal dust.” The body recognizes this dust as a foreign object and tries to expel it by coughing. Much of the dust is unmoved, however. This remaining dust irritates the lungs and creates scar tissue, which inhibits the lungs’ capacity to turn oxygen into carbon dioxide.

Patients sometimes do not show symptoms during the disease’s earliest stages, although the damage can be picked up on x-rays. Scar tissue continues to build up as things progress, however, eventually leading to late-stage black lung known as “progressive massive fibrosis.” By this stage the lungs are almost completely covered in fibrous scar tissue. Patients usually rely on bottled oxygen to help them breathe. Once the disease reaches this final stage, black lung will only continue to grow worse. “There’s no drug that can help this,” says NIOSH epidemiologist Cara Halldin. Some late-stage patients get lung transplants. although the survival rates for that procedure are not promising.

The only thing that will stop the progression of the disease is to stop the patients’ exposure to coal dust while they are still in the disease’s earliest stages. There are measures mines can take to limit miners’ exposure to dust, including curtains, airflow control systems, and water sprayers on machines. But Halldin says sometimes, if a piece of equipment breaks or the production has fallen behind schedule, mines don’t want to take the time for these safety precautions.

The U.S. Mine Safety and Health Administration also offers guaranteed transfers to miners diagnosed with black lung, allowing them to move from the dustiest parts of an operation to somewhere with less exposure. Only about 10 percent of eligible workers use the transfer orders. “We don’t know for sure why that is,” Wolfe says. Anecdotally, Wolfe has heard some workers don’t use the transfer orders because they like their jobs or are worried they will be fired or passed over for promotions, even though federal law protects transferred miners against workplace discrimination.

Some workers also seem to hold onto their transfer order until they are ready to retire, in hopes of working their last few years in an easier assignment. Of course, this completely undermines the idea behind the transfer program. By continuing to breathe harmful coal dust, these diagnosed miners have only helped their ailment to advance.

Wolfe says this is the biggest challenge to combating black lung: making sure employers and employees understand the disease and take appropriate precautions to prevent it, or at least slow its progression. She says mines constantly talk about safety to prevent major catastrophes but there is little focus on preventing disease, even though conditions like black lung are more deadly in the long run.

Many young miners don’t even believe the disease is still around. “They look at me with a blank face and say ‘We didn’t think you could get that anymore,’” Wolfe says. They do not realize every breath brings them closer to their own diagnosis.

Shot at a second chance

This story was original published in the March/April 2015 issue of West Virginia Focus magazine.

In late October 2011, storm winds brought down trees all around James Ball’s home near Danville, making the road to his home impassable. It was a terrible time to have a drug overdose.

Ball’s cousin, Delegate Josh Nelson, recently took to the floor of the House of Delegates to recount what happened next. Someone called 911 once it was clear Ball needed medical attention, but paramedics could not make it up the 10-mile-long hollow where he lived. Nelson and his family members tried to cut the trees out of the roadway with chainsaws. They tried to drag the trees out of the way with all-terrain vehicles. But despite their work, the ambulance only made it halfway to Ball’s house.

Desperate, they switched strategies and loaded Ball onto a stretcher, strapped the stretcher to an ATV, and hauled him to the ambulance. “Unfortunately we did not get it there in time and he passed on,” Nelson told his fellow lawmakers. “It was too late.”

Ball battled his addiction to prescription painkillers for years, Nelson says. More than once he started attending church, trying to live right, only to have his demons drag him back to the bottom. “He would kind of get better and do it again,” Nelson says. Ball had overdosed before but was lucky enough to get to a hospital in time for doctors to resuscitate him. On October 28, 2011, his time ran out.

Nelson says Ball probably would still be alive, however, if his family members had access to Naloxone, an “opioid antagonist” medication that oftentimes can save the life of someone suffering from a heroin or painkiller overdose.

The medication, sometimes known by its brand name Narcan, has been on the market for more than 30 years but, until recently, only medical professionals had access to it. During his State of the State address in January, Governor Earl Ray Tomblin vowed to put Naloxone in the hands of both emergency responders and addicts’ loved ones. “By expanding access to this life-saving drug, we can prevent overdose deaths and give those suffering from substance abuse the opportunity to seek help, overcome their addiction, and return to their families, workplaces, and communities,” Tomblin said in the speech.

West Virginia leads the nation in drug overdose deaths, according to a 2013 report by Trust for America’s Health. In 2010 there were 28.9 fatalities per 100,000 people in the state, the highest per-capita rate in the nation. That is also a 605 percent increase over 1999, when the state had just 4.1 overdose deaths per 100,000 residents. Gary Mendell, CEO of the anti-drug lobbying group Shatterproof, says many of those lives could have been saved if Naloxone were more readily available.

Members of the state Senate passed a bill to deregulate the overdose antidote during the 2014 regular session, but the measure failed to gain traction in the House of Delegates. Governor Tomblin’s proposed legislation did not meet the same fate, however. It passed the Senate with a unanimous vote in early February. A little more than a week later, following Nelson’s heartfelt floor speech, it received another unanimous vote in the House of Delegates.

Tomblin signed the bill into law on March 9, so by the end of May state doctors will be able to prescribe Naloxone to drug addicts’ family, friends, and caregivers, as well as police and firefighters. The medicine can be given through a single-use shot, like an EpiPen, or a nasal spray. And while the law also created a limited liability statute for those administering Naloxone, the medicine carries little risk. It’s not even dangerous if given to someone who is not experiencing an overdose. “There’s no negative effects. It’s not addictive. There’s no abuse potential,” Mendell says.

Naloxone works by blocking the receptors in the brain affected by opioids, a category of drugs that includes heroin, morphine, oxycodone, hydrocodone, codeine, and methadone. By blocking the receptors, the medicine temporarily stalls the opioids’ effects on the body. The results usually are immediate. Most overdose victims in respiratory distress begin breathing regularly within minutes of receiving a dose.

The medicine is not without risks, however. It does not work on non-opioid drug overdoses—meaning it would be useless on cocaine or methamphetamine addicts, for instance—and overdose patients still must seek medical attention even if they feel fine after receiving Naloxone. Dr. David Seidler, chairman of Charleston Area Medical Center’s emergency medicine residency program and medical director for the Kanawha County Ambulance Authority, says overdose patients often refuse medical treatment after being revived with Naloxone. “They refuse to go to the hospital because they wake up and they’re feeling fine, or they wake up and they’re pissed off,” he says.

And Naloxone does not always last as long as the opioids it neutralizes. The medication can wear off while the other drugs are still coursing through an addict’s veins. “There’s a risk they’ll become unconscious again and potentially could die,” Seidler says. “Thirty or 40 minutes later, if they had a big enough overdose, they’ll be unconscious again.” If that happens, medical treatment at a hospital is an overdose victim’s best chance at survival.

Rodney Miller, president of the West Virginia Sheriff’s Association, says he’s glad officers will now be allowed to use Naloxone. Police often arrive at the scene of overdoses long before ambulance crews, but since state law limited the medication to medical professionals, “we couldn’t, by law, have Narcan in our possession, let alone administer it,” Miller says.

He says expanding Naloxone’s availability will not solve West Virginia’s rampant drug abuse problems. But, he admits, that’s not the point. “The spirit of this legislation is, if you’ve got a person that’s an accidental overdose, it can save their life and give them a second chance.” It will be up to the addict to decide what to make of his second chance.