by Kim Krisberg

When an explosion on the BP-operated drilling rig Deepwater Horizon caused what would be the worst oil spill in U.S. history, Glenda Perryman’s friends and neighbors answered the call for clean-up workers.

Perryman lives in Lucedale, MS, about 45 minutes from the Gulf Coast — “we’re in the middle of nowhere…and there’s no jobs in George County,” she said. So when the call for clean-up workers went out, residents in and around George County decided to take BP up on the offer. As Perryman told me, “they quit their jobs at Wal-Mart and McDonald’s for better pay and went down there…you can make more money (cleaning up the oil) and you got family and children that you have to take care of.”

Soon after, the clean-up workers started getting sick. And their families were getting sick, too. Perryman said they’d break out in boils and rashes all over their bodies; in fact, they’d ask her to come over to document it. Some went to the doctor, while those without insurance ended up at the emergency room. Some have slipped into serious depressions and others are unable to work, said Perryman, the executive director and founder of Immaculate Heart Community Development Corp., which works to serve low-income communities in rural, hard-to-reach counties.

“We need people to know that we need help,” said Perryman. “All of these people are suffering…it’s like we’re living in the third world. These are human beings and it’s like everybody just done turned their backs on them, just throwing them away.”

Perryman’s community’s experience isn’t an isolated one. Oil spill clean-up workers, their families and residents along the Gulf Coast have been reporting health problems since shortly after the disaster in spring of 2010. According to the Deepwater Horizon Study Group at the University of California-Berkeley, from five days after the April 20, 2010, explosion to September 2010, more than 400 reports of health complaints believed to be connected to the oil spill were reported to the Louisiana Department of Health and Hospitals. The great majority of those reports — 325 — came from workers. The most common health issues reported included headaches, dizziness, respiratory problems, fatigue, nausea and vomiting. (Click here to read latest about the medical and economic-loss claims process for the victims of the BP oil spill.)

“These clean-up workers are so frustrated,” Perryman said. “It’s like the world forgot about us.”

Unfortunately for those who fear the spill or its cleanup made them sick, there’s a massive dearth in research on the health effects of being exposed to oil spills and the chemical dispersants used to clean them up. It’s a serious problem and one that makes it incredibly difficult — if not impossible — for those affected to be compensated for related health claims. Just a few weeks ago in late May, U.S. Surgeon General Regina Benjamin put out a call to help fill the glaring gap. TV, radio and internet ads now feature Benjamin – who’s a Gulf Coast native as well as the nation’s top doctor – calling on oil spill clean-up workers to take part in the national Gulf Long-Term Follow-Up Study (the GuLF Study), the largest study of its kind to examine long-term health consequences among oil spill clean-up workers and volunteers.

“The surgeon general comes from that area…so she’s committed,” said Dale Sandler, lead investigator of the GuLF Study and chief of the Epidemiology Branch at the National Institute of Environmental Health Sciences (NIEHS). “We are still only half way there, so it couldn’t come at a better time.”

Designing the study

Sandler means NIEHS is halfway toward enrolling their goal of 40,000 study participants. The study officially launched in February 2011, but the challenges are significant. While Sandler estimates that up to 170,000 people worked in some capacity to clean up the oil spill, getting complete lists of clean-up workers as well as other relevant data needed to design a proper study is difficult.

Based on the earliest lists of workers, Sandler said GuLF Study researchers had names, addresses and phone numbers from between 110,000 and 130,000 clean-up workers (the study includes workers who had some connection with the clean-up, which could be as minimal as working one hour after being trained). But researchers soon discovered that many of the phone numbers listed no longer worked, said Sandler, who noted that many clean-up workers came from disadvantaged, low-income communities. Plus, there was no central database for all those who came in contact with the clean-up efforts — some workers were listed with various federal agencies, others with BP. So researchers decided to go with a two-pronged approach: they’d contact potential participants and work to spread word of the study so that clean-up workers could contact the researchers too.

So far, Sandler told me that while not everyone contacted agree to participate, “by and large, people are really concerned about their health and they understand the importance of having large numbers (of participants in the study).” She said that when researchers are able to contact a worker on the phone, more than 85 percent of the time the worker agrees to be interviewed — the big problem is simply reaching them in the first place.

“There are pockets of the community that are mad and don’t trust the government and those people are harder to reach,” she said. “But to have enrolled 20,000 people already is quite an accomplishment.”

A phone interview is the first step for study participants, followed by a home visit to conduct a physical exam and collect blood, urine, nail and hair samples. A smaller group of participants will receive a more intensive biomedical exam. Already, 5,000 home visits have been completed, Sandler said.

Sandler emphasized that BP is not involved in the science or management of the GuLF Study, though NIEHS researchers are working with BP to gain access to relevant information, such as information on work site conditions and data on environmental measures that were taken during the clean up. She describes a thorny process, saying, “There are people of goodwill who are interested in the health of the people who work for BP and then there are the lawyers and legal issues…we have some of these data and we’re on track to get some more, but it’s slow.”

“The larger concern that we have is the nature of emergency response because there’s no single repository for all of this information,” Sandler noted.

Right now, the GuLF Study has funding for a five-year effort, though the study is expected to last for at least a decade. The information gleaned from the study could help inform what kinds of health services are needed for oil spill clean-up workers in the future as well as how quickly and intensively those services need to be delivered, she said.

“In order to be effective, we need to reach out to a full range of people who participated in the clean up, otherwise it’ll be difficult to sort out what’s related to the oil spill and what’s not,” Sandler said.

‘Not the first and certainly won’t be the last’

The GuLF Study isn’t the only such effort. Edward Trapido, associate dean for research and professor of epidemiology at Louisiana State University (LSU) School of Public Health, is principal investigator on two studies examining the long-term health and behavioral effects of the BP oil spill on women and children.

The first study, called the Wives of Workers Study, involves thousands of wives and female partners of clean-up workers in seven southeastern parishes who were indirectly exposed to the oil and chemical dispersants through activities such as cleaning their partners’ work clothes. (Trapido said that because the larger NIEHS study overwhelmingly includes men, who were the great majority of the clean-up workers, LSU researchers wanted to zero in on the effects impacting women.) The second study, Women and Their Children’s Health Study, or WATCH, will also examine the long-term physical, mental and community health effects of the BP oil spill.

“This kind of event is not the first and certainly won’t be the last of its kind,” Trapido told me. “There are oil spills and leaks all the time and we want to establish what are the risks, not only for the workers but also for the families. To the extent that there have been physical and mental health effects, we’ve already seen the first wave…but a lot of the diseases are those that take a long time to be seen. We need to be able to document that so that people can protect themselves in the future.”

Still, Trapido understands residents’ trepidation.

“This is a population that’s been heavily studied in the past,” he said. “They want answers, but at the same time they need services and they’ve expressed that.”

Study participants in the LSU efforts will be alerted to any abnormal test results and given a referral to a provider, while GuLF Study participants receive their individual results within one month of their home visit. If the GuLF Study participant consents, his or her health care provider will also receive a report of the results; participants with emergency levels would be alerted immediately at the time of the visit. Neither the GuLF Study nor Trapido’s provide treatments. So residents, many of whom are uninsured, will still have to pay providers to treat any health conditions they learn about through their study participation or forgo care.

Anne Rolfes, founding director of the Louisiana Bucket Brigade, an environmental health and justice nonprofit working to make industry accountable for its pollution, said it’s great that studies are being done, but it’s not enough. She said the community’s response has been clear: we need health care.

“I understand that’s not what NIEHS does, yet on the other hand we need vigorous action to start to develop treatments,” Rolfes said. “It’s an emergency situation down here. The idea that we study and study and never treat people has us very fed up.”

From her FEMA trailer, where she’s lived since Hurricane Katrina ripped the roof off her house, Glenda Perryman kept offering to help me with my story, letting me know that I could call anytime and she’d do her best to make sure I got what I needed. For years now, she’s been connecting people with what she can and working to create healthy, safe and secure communities in rural Mississippi despite significant challenges and barriers. She laughed and joked at times during our interview, but she was also heartbreakingly candid and emotional about her frustration with the government’s response and the toll that the oil spill has had on her community.

“We haven’t recovered,” Perryman said. “We’re getting there because we got neighbors helping neighbors. We’re gonna make it. It may take us longer than it would if [the government] would do what it’s supposed to do, but we’re gonna survive.”

To read more stories from the residents of the Gulf Coast, visit the Bridge the Gulf storytelling project. To learn more about the GuLF Study, visit NIEHS.

Kim Krisberg is a freelance public health writer living in Austin, Texas, and has been writing about public health for a decade.