A Trust Betrayed (23 page)

The
Washington Post
tried to reach the Marine Corps commandant, General Hagee, for a comment on the panel's report, but none was forthcoming. “Hagee declined repeated requests for interviews and would not respond to written questions,” the
Post
reported. Jerry Ensminger was not surprised. “We gave the Marine Corps a chance to police themselves,” he told the
Post
. “It's obvious that they do not want to and they are not going to unless they are forced.”
¹⁹

The federal health agency studying the effects of the contamination, the
ATSDR
, was a long way from finishing its work, though. At the end of September 2004, agency director Henry Falk notified Richard Frandsen of Congressman John Dingell's staff about a four-part plan for expanding study efforts at Lejeune. “In response to questions and concerns raised by you and others,
ATSDR
has been exploring a variety of options for enhancing our understanding of health effects associated with exposure to contaminated drinking water at Camp Lejeune, and for more effectively communicating related information to the public,” Falk wrote to Frandsen.

The plan included convening an expert panel “to explore the feasibility of additional epidemiological research” on the tainted water; increased research on the effects of the two most prevalent contaminants at Lejeune,
TCE
and
PCE
; “enhancing communications to the affected community” by adding materials to the
ATSDR
website; and clarifying the 1997 Public Health Assessment
for Camp Lejuene about the risks of health effects from the base's water. The most promising news for victims was the formation of an expert panel, independent of the
ATSDR
, to evaluate the government's research and perhaps give it a much-needed kick in the pants.
²⁰

As it turned out, the public meeting before the seven scientists who were selected for the expert panel, held in Atlanta in February 2005, became something of a two-day catharsis for dozens of former Marines and their families who believed their lives had been irrevocably damaged by the poisoned water at Camp Lejeune.
²¹

“My name is Hilda Rose,” said the first witness:

I'm a parent. We arrived at Camp Lejeune, North Carolina, in January of 1984. We could not get into base housing at Tarawa Terrace until a few months later. My son Daniel was born on December 8, 1984. . . . Daniel was born with a heart valve defect. . . . In March of 1985, I became pregnant again. . . . Nathan was born two weeks premature. He had so many problems. . . . He was admitted to the hospital for a high fever and ear infection. That's when they discovered that Nathan had two holes in his kidneys that caused urine to build up and cause an infection. . . . Now Nathan is nineteen years old. I just took him to a urologist and he told me Nathan needs a kidney transplant.

Lita Hyland, a native of Peru, described an array of health problems. “I have a letter from the hospital and I am going to read it,” she said. “I am sorry about my bad English, but I'm very nervous, too. This is a big thing for my family and I want to be my best—okay.” From the letter, she read, “Ms. Hyland has had multiple medical therapies . . . including chronic abdominal pain, chronic diarrhea, oral ulcerations, multifocal joint pain, fatigue and depression. She continues to require close follow-up. An attempt to
determine her exact diagnosis presents a unique learning opportunity for the military physicians and might help in the treatment of similar patients in the future.”

Statements by Jeff Byron and Mike Gros were read by Jerry Ensminger, the first describing the years of serious medical problems for his two young girls, the second outlining a life that turned into a battle with incurable leukemia and a host of related health issues. Then came Denita McCall, a Mexican American from Colorado who joined the Marines immediately after high school to follow in the footsteps of her father. “I'll begin by telling you that right out of boot camp for the Marine Corps, I was stationed at Camp Lejeune,” she said. “I was eighteen years old.” The year was 1982. “Seventeen years later I was diagnosed with parathyroid cancer. This is my radiation mask. . . . Before I came here I didn't think that anybody would listen, just because of the direction
ATSDR
has taken with this whole situation. So, I don't even know why I say this.” Nevertheless, she continued:

It's a horrible thing to have your head strapped down to a table and receive radiation, but I [also] had a radical neck dissection and part of my esophagus removed. . . . I've had several surgeries to restore my voice. . . . Needless to say, it's been a very hard six years, because this just happened to me six years ago. Aside from the cancer, I have a lot of other health problems, but I'm more focused on the one that's potentially going to kill me. . . . My oldest son who's twenty, he's also a Marine. He's been diagnosed for the past seven years with some kind of liver disorder—they're not sure what it is. . . .

I really think it's important that somehow, someway, we contact most everybody that lived on that base. We were very young. We were eighteen years old, to me that qualifies as a child. I was—I was right out of high school. I don't know. Some of the
data from
ATSDR
that I've read states that the latency period for cancer would be ten to twenty years, and I got mine about seventeen years later. So, maybe they're getting sick right now and they don't know what's happened to them.

Just from the websites that I've visited, from some of the people here who started them, there are a lot of people who have cancer. But I need—I would like you guys to really get that information, so that we can prove to the Marine Corps. At this point I don't—I'm not eligible for any life insurance or health insurance. I'm not eligible for any service-related disability through the
VA
. So basically you know I'm at the mercy of public aid and the
VA
to help me out. It's just—It's been a struggle. Sorry, I'm so upset, crying. I just didn't think anybody cared. Thank you very much.

One by one the speakers presented a direct challenge to the Marine Corps and the Pentagon. The scientists listened with concern and expressed their sympathy for the victims. “I think I probably speak for everybody telling you how moved I am by your stories, you survivors,” said Richard Maas, an environmental science professor at the University of North Carolina in Asheville. “How absolutely admiring and respectful I am of your persistence, your creativity and your hard work to do something about this. Your patience and letting your good sides flow.” Maas also offered a bit of advice: “You have to be nice to your friends and tough on your enemies. One of the hardest wisdoms is to know, to recognize the difference, and know that enemies can become friends.”

The experts also made clear that it was time for the
ATSDR
to move past the investigation stage and start drawing some conclusions. After all, it had been fourteen years since the agency began looking into potential health problems at Camp Lejeune, and all it had to show for it was a Public Health Assessment and a report on pregnancy outcomes that were both badly flawed.

“Where we stand right now is that you know that this Health Assessment is incorrect in some major ways,” said Maas. “I think what we're all concerned about and trying to get at here—is [whether] there [is] some way to not sit around for a long time until this new hydraulic modeling and the exposure assessment is finished? To acknowledge that there are some problems here that we already know are problems, in terms of areas of the base that were served by contaminated water.” Speaking to the
ATSDR
scientists at the hearing, Maas said, “Probably now in 2005, you might take another look at the kind of out-of-hand dismissal of adult cancers. So there might be some reason to, at least in the interim, put some kind of addendum or something that acknowledges that there's new evidence that's come out here and there are some problems.”

“Let's face it,” said David Ozonoff, a physician who had been chairman of Boston University's Department of Environmental Health for more than twenty-five years and had worked on scores of epidemiology studies for areas contaminated with
TCE
and
PCE
, including the community in Woburn, Massachusetts, that was made famous by the book
A Civil Action
. “Underlying this is sort of an issue of trust.” Directing his comments to the federal health agency scientists, Ozonoff said:

Although
ATSDR
has a long record of saying great things about how they're working for their community, there's been a very rocky history here—goes back years and years. It's often not at the level of headquarters. It's what goes on in the field often. Part of that is because people out in the field are asked to do almost impossible jobs. You've got a couple of people who maybe just got a degree in earth science somewhere, and now they're asked to do epidemiology and toxicology and so on, on all these sites. It really is impossible. Whatever the objectives here might be . . . you're also going to have to try to figure out what to do about the trust issue.

Ozonoff suggested that perhaps the
ATSDR
needed to get away from doing a “strictly scientific study” and “open up the process more and allow some participation by people at Lejeune in some meaningful way.” If the agency had done that earlier, it probably wouldn't have been so dismissive of adult cancers in its earlier studies, he said. “To say that you don't expect them was just, in my view, was not a good way to generate trust, certainly didn't generate my trust,” he said.

“I understand that this is going to be a difficult thing to study,” Ozonoff said, adding:

I don't think anybody expects you to do anything but the best that you can do. So, nobody's expecting you to do the impossible, but by having a sort of a real partnership with the affected folks you can get two things. You can get, on the one hand, buy-in and understanding of all the difficulties involved, which I think will help the trust issue a lot. At the same time you can get the benefit of the tremendous amount of raw brain power that there is out there in the community. We know from our study that . . . I didn't mention this when I introduced myself, but I was a plaintiff witness in the Woburn case. I'm sorry to say that some of the stories I've heard this morning, the testimony I've heard this morning[,] was very reminiscent of stories that we heard in talking to the Woburn families, which was absolutely just heart-wrenching. You never get used to hearing it. When we worked with them, they had some really good ideas that we hadn't thought of because they know their community and they know their lives. You can take advantage of that. It can make the study better. Maybe you can do some things that you thought you couldn't do.

Later in the meeting, Ozonoff had a final message about the agency's tentativeness in accepting the risks of exposure to
TCE
and
PCE
. “I don't know what it takes to convince
ATSDR
about the science of some of these things,” he said. “You have to have a nuclear device set off underneath you in order for you to say, ‘Oh gee, I guess maybe those things are bad.' It's a problem. I can't believe that people are arguing about
TCE
. I really can't believe it. I know they are because I run across those people all the time. But, give me a break. And I left out a word before break.”

Four months later, the scientific advisory panel issued its report with one very strong recommendation: first and foremost, everyone who lived at the base in the two decades before 1985 should have their health evaluated at government expense. The experts also suggested that future studies of the base contamination should be done “in full partnership with the exposed community.” New studies should begin without waiting for ongoing studies to be completed, and there should be immediate recognition that the water contamination could cause health problems for adults as well as for children. “All persons potentially affected by exposure to
VOC
in the drinking water at Camp Lejeune should be notified,” the scientists said. And there was one final recommendation for public officials in Washington: “Future funding for Camp Lejeune health studies should come through direct congressional action, not
DOD
, to avoid even the appearance of a conflict of interest.”
²²

Panel member Richard Maas summed up his concerns in an interview with the Associated Press after the report was released. “Camp Lejeune presents a groundwater contamination site of unusually high level of concern,” he said in the July 1, 2005, story. “It became clear to me from my work on the panel that our country had treated these people unfairly. There should immediately be legislation passed that offers health care compensation to the thousands of people who were exposed to this contaminated drinking water and are now experiencing severe health effects.” (Maas died in December 2005 after a short illness at age fifty-four.)
²³

In response to the panel's recommendations, the
ATSDR
formed a Community Assistance Panel (
CAP
) made up of victims of the contamination to provide input for federal health studies. They included Jerry Ensminger, Terry Dyer, Tom Townsend, Jeff Byron, Denita McCall, Dave Martin, and Sandra Bridges. The panel held its first meeting on February 1, 2006, at
ATSDR
headquarters in Atlanta. (Townsend participated by phone from his home in Idaho, as his wife of fifty-one years was in hospice care after being diagnosed with terminal liver degeneration. Anne Townsend was seventy-three when she died on February 22, 2006, and her husband was convinced that exposure to toxic chemicals at Camp Lejeune had everything to do with the rare disease that took her life.)