CDC Navajo Uranium Impact studies: Dr. Johnnye Lewis

[Editor’s note: See Part Two of this interview, “Navajo Health Research: Dr. Johnnye Lewis Continues.” Last week we reported how the major media were ignoring a major CDC study of the health effects of uranium contamination on the Navajo Nation, and they have plenty of excuses. For one thing, this is an ongoing study, not final results, so it isn’t news. But perhaps the greatest disincentive – besides the political issues surrounding the economic interests of the nuclear industries and general habits regarding the coverage of minority populations – is the complexity of the story itself. What follows are excerpts from an August 28, 2012 interview with the study’s principle investigator, UNM Community Environmental Health Program director Dr. Johnnye Lewis, who has balanced an already remarkable career as a laboratory toxicologist with an equally impressive involvement in community health initiatives. She is also a leader in developing Community Based Participatory Research (CBPR) methods for public health studies especially among tribal communities. We hope the abundance of information she shares about the background and nature of the Navajo Birth Cohort Study – which is awaiting the release of federal funds to begin the actual field data collection phase – will foster an appreciation for the enormous challenges posed to a handful of dedicated professionals – and especially to the Navajo communities themselves – by the legacy of the U.S. weapons program and nuclear energy industry at the place where the “fuel cycle” began.]

By ERIC SHULTZ

La Jicarita: I’ve looked at the multi-agency 5-Year Plan that resulted from the [2007] House Oversight Committee…

Dr. Johnnye Lewis: House Oversight and Government Reform,  and now Energy and Commerce. It’s moved with Henry Waxman…

LJ: …and that seems to be the governing document, but from my reading, it doesn’t explicitly require something like the [Navajo] Birth Cohort Study. That seems to go above and beyond.  I was wondering if you could talk about the genesis of this study. What other influences caused it to come about?

Dr. Johnnye Lewis. Photo by Eric Shultz

JL: Well, Navajo Nation and Navajo communities have been asking for health studies for decades and they never really got any response. When the 5-Year Plan started… Let me back up a just little bit. Since the late ’90s, EPA working with the Navajo Nation through a contract with the Army Corps of Engineers, had started to assess the water quality in the Western Agency on the northern part of Navajo Nation. At the time, they did a really good and thorough job of measuring water quality but they never actually looked at how those water sources were being utilized and there were some questions also about sovereignty and how that relationship evolved and it led to kind of a cessation of that activity after the first report. What it did show was that there was some water contamination and the Navajo Nation started having more concern about what the health effects might be.

About that same time, we got approached by 20 chapters [towns] in Eastern Agency concerned about kidney health: if uranium is here, is it not likely to be in the water sources we use for drinking water and could [uranium contamination and kidney disease] be related? They asked if we would work with them to get a funded research program to look at those questions.

LJ: By “we” you mean the UNM Community Environmental Health Program?

JL: Well, me specifically, and Chris [Shuey of the Southwest Research and Information Center, SRIC] was also at that meeting, a very large meeting of everyone they thought could contribute. SRIC has provided technical support to communities for a very long time, and was also working with the Environmental Law Center on the case challenging new permits for in situ mining. Coming out of that meeting they asked if we could… I had been working on the UMTRA project…

LJ: Sorry?

JL: The Uranium Mill Tailings Remediation Act, and I worked specifically on the groundwater portion… looking at the development of tribal risk scenarios, …how the tribes use their resources and how that might alter the cleanup values. Then in 1996 when I came to the University, I also started a Uranium Education Center in cooperation with Diné College…. I’ve been involved with these issues for a long time so that’s why I got pulled into [that meeting]. We started working with the communities to build research capacity and at the same time started working with the agencies that were trying to address this. That got involvement of USEPA and [Navajo Nation] NNEPA, and individuals from other agencies who had been out there working on various bits and pieces of projects and realizing that the scope of the problem was so great that is was very unlikely that any one resource could address it. We started a series of informal quarterly meetings and one larger annual meeting, starting in 1999 or 2000, asking what could each of us bring to the table and leverage against each other to try and answer the health questions, the environmental questions, the water quality questions. [Yellow Dirt author] Judy Pasternak actually got involved with us at that point…

LJ: She’s on my to-read list…

JL: She came to a meeting… and that started her initiative. She worked for many years on a series of articles in the LA Times that clearly raised concerns about health effects and that got Henry Waxman’s attention and started the hearings.  So all of these things are inter-connected. All of the people working on this actually have a very long history of working together from different perspectives.

At the time, IHS [Indian Health Service] really had no programs looking at community health, for community members who were exposed, and they note in the 5-Year Plan that the only thing they were doing was supporting our research through collection of samples in the Eastern Agency study. Coming out of the first 5-Year Plan, they had committed to do a medical monitoring program that also was one of the stated goals in the Navajo Uranium Assessment and Kidney Health Project, that first research project that we did. That was the long-term goal: to use the data to develop a kidney health registry, with IHS, so that people who were exposed and had those concerns would be able to follow up. The Waxman plan pushed that to the forefront and caused IHS to start that initiative a little sooner, which is great.

As we went out into the field to collect our last samples, they started their medical monitoring program which is called CUEJTH, Community Uranium Exposure Journey to Healing. We worked with IHS and tried to get some commonality so we could compare long-term the results they were getting from people who had exposure concerns, with our research results. Looking at the first 500 people that they have enrolled, it does look like they are finding the same kinds of issues that we did, so that’s good corroboration for our results.

[Research on] health effects was not prioritized in the 5-Year Plan, but it continued to be on the table. It was felt that it would take longer than some of the other issues that were further along. Two years into that, it got added on as an additional task for the federal agencies.

LJ: Added on by Congress?

JL: By the Committee. The study was originally only for three years.  It was timed to coincide with the 5-Year Plan. I think it was always considered a part of that same effort, it just was not formally incorporated into the first 5-Year Plan… When the 5-Year Plan came out with their scoping request, we already had water quality data for 150 wells in Eastern Agency. We had worked with the communities on how you inform people about water quality issues in a respectful way…

LJ: I read the article about the risk mapping

JL: Yeah, so the [contamination warning] signs and the language that we developed to work with the communities were adopted by that whole inter-agency working group. We did the outreach under contract to EPA to try and inform beyond our twenty chapters, all over the rest of Navajo Nation, so there are consistent ways of approaching that. So those big yellow signs are posted in every chapter house [town hall] where we or any of the agencies found contaminated water sources….

LJ: Now this action, the creating and posting of signs, was that something that was developed with community input?

An unregulated water source near the Northeast Church Rock Mine Superfund site, water quality unknown. Photo by Eric Shultz

JL: Yes, exactly, it got adopted by the agencies because we had already gotten agreement. We did a training working with Navajo EPA and the Community Health Representative [CHR] program funded through Navajo Division of Health, and got all of the  CHRs and distributed staff of the Navajo Water Program to say how they thought their region… Navajo’s a very regional language and it’s not [traditionally] written, so some of the chapters felt it was very appropriate to have written Navajo on it, and really wanted to do that so they could help to promote Navajo as a written language, so we have the Navajo and the English. Other chapters felt nobody is going to understand what it says anyway, so leave it off and just put big stop signs on it…. We’ve tried from the beginning to really communicate about these efforts a lot and make sure that the word gets out there.

It’s going to take a lot of resources that are not currently available to clean up the problem. In the interim, I think our efforts are… The more we can make people aware of the problem, and the more we can provide them with the information they need to make better decisions… And so we generally try to educate people about what the issues are, and also to show them where the wells that are less toxic would be.

LJ: So it’s a harm reduction approach?

JL: Exactly. The other issue we have always been concerned about is that you can’t tell where these [uranium mining waste] contaminated sites are. The really big ones like the Skyline Mine and the Northeast Church Rock Mine, people know where those are. Some of the big piles you can see. We’ve had situations, though, where there was mining at the top of a mesa and they push waste over the side, and there’ll be an 80 foot pile of contamination and the toe of that pile will be enclosed in someone’s corral, and their home will be a few feet away from it, and when you talk with them they had no idea that was what was in the pile. So in a lot of cases there is very poor knowledge about where these sites are. Especially in some of the Eastern Agency sites that were open-pit mines, the material is quite exposed, and people did not necessarily know that those piles are contamination. They’re overgrown now and just look like normal parts of the landscape. So that becomes reasonably frightening, when you don’t know.

We would ask people if they lived within two miles of a waste site –there are 1,100 waste sites – and 20 to 25 percent would answer incorrectly. We know where the GPS locations are, and they would answer incorrectly in both ways. Some people thought they lived near one and didn’t and others were totally unaware.

LJ: I want to learn more about the Birth Cohort Study, and especially about the Community Based Participatory Research [CBPR] design aspect of it, but to get there, would you do me the favor of going over briefly the previous research on uranium impact that’s gone on on the Reservation, beginning with the occupational  studies from the 1950s?

JL: We started off with the occupational exposures [i.e. from mining and milling], but those were primarily a different route of exposure and when you look at toxicity, the route of exposure has a lot to do with the end health effects. The route, the dose and the duration of the exposures. You can think about occupational exposures being very different in terms of the source material. It’s mostly going to be inhalation. Most of those exposures were underground, radon was a huge thing, there was not good ventilation…

LJ: It’s much more intense than when it’s out in the open?

JL: Because inhalation is the primary route of exposure, you know we worry about radon with smoking because it clings to the dust particles that are part of the combustion product of the smoke. If you’re underground in a mine you’ve got diesel exhaust, which has very dirty particles, and dust, so the radon again… Alpha emitters are not very toxic when they’re outside your body as radionuclides, but when you take them inside your lungs, there’s enough energy…

LJ: When they’re adjacent to cells…

JL: Right, then you get a lot more damage, so that was basically what happened with the miners. The other thing that happened was that it turned out that the morphology of the Navajo miners – the lung morphology, the shape of the lungs – actually differed somewhat, so if you look at pneumoconiosis or these chronic inflammatory things that are the result of these mining insults or any kind of particulate insults, you would see that we would have a higher prevalence of pneumoconiosis for a given time underground depending on whether they were Native American, Hispanic or Non-Hispanic White workers. That turned out to be related to the actual shape of the lungs. The material got deeper, got retained longer… People knew that underground mining of uranium was hazardous, that it produced lung cancer, it used to be called mountain sickness in Czechoslovakia. The AEC never acknowledged that, but you know, the war effort, secrecy, the AEC had total control, national security: it never got discussed with the miners.

We’ve worked with Post-’71 miners a little bit. They’re trying very hard to get included into the Radiation Exposure Compensation Act [RECA]. They are now excluded…  It has to do with government ownership of the ore, and that changed in 1971 when companies were actually allowed to own ore, and they were supposed to take on the safety standards. When you talk with the people who mined after ’71, not so much… They have pretty consistent horror stories about the mining. When I first started working here, I was at a meeting with someone who previously had been a foreman in the mines, and it was very sad. It was in the Grants area, and he informed his neighbors that they were using recycled mine water as the shower water…  It was one of the most heart-wrenching meetings I’ve ever been in. This was somebody who really did care, and at the time he was sort of  sworn to secrecy, and had stayed and tried to make an impact. I don’t remember who the gentleman was, it was a long time ago, but everyone who was in the meeting was hauling an oxygen tank behind them, so it was some very sick people. Post-71 miners have done a survey. Some of their results have indicated lots of concern about congenital malformations and developmental disabilities in their offspring. This was a pretty informal survey. They were just trying to document what their concerns were…

There were sudies done through March of Dimes funding. A woman named Lora Shields who was at Diné College did several studies tracking birth outcomes in the Shiprock area, and in the end decided that congenital malformations tended to be associated with women who lived close to active uranium mines. There was always a confound in those studies, so I don’t think they ever really got accepted. They were always considered to have a lot of uncertainty because there were electronics plants and she apparently had not controlled for those. That left a cloud of uncertainty over her results, but they’ve been out there and needing follow up for a very long time. Those were in the ‘80s.

So, nobody had ever done community health studies. Some studies had been done  around some of the [uranium mining] communities in Colorado, but they were done only looking at mortality, from existing health records… they didn’t really go in and look. Were the people still there? Were the people exposed? You don’t really know what that represents in terms of exposure. A lot of the miners were mobile, they moved when mines and mills closed, so you wouldn’t necessarily be expecting them to be reflected in those populations. So I never know quite how to interpret those results.

So our [earlier kidney disease] study I think was the first systematic one to look at these community-level exposures, and we started from a philosophy that in order to get valid results, especially in these tribal populations, it really meant involving tribal community members, both to tell us what is a good way to ask these questions… to make sure that we collaboratively had a study design that met the needs of the science, but also asked the questions in a way that we would get valid results. We would often hear things,  just in our interactions in communities, that researchers had come in and people had told them what they thought they wanted to hear. That made us really nervous about designing a survey and going out there, so from the beginning we’ve had a lot of involvement of community members as members of this research team, and when we say community members we probably tend to have a little different spin on it than a lot of community-based studies do. We really are working with people who have had no previous research experience in many cases, but people who are integrated into their community, who have a very good understanding of their community’s perspective on the problems and so really can help us to understand. We’ve had community staff that hadn’t even completed high school and have done a great job, because they have a really vested interest in doing this.

The Navajo Birth Cohort team is about half Navajo, and it spans everything from lay community members up through leadership in some of the Navajo agencies. Navajo professional clinical staff are involved. We also have involvement of medicine men, Native medicine programs, and have done a lot of work on what are the sensitive issues here. How do we talk about them? How do we become aware of what they are and design our surveys in a way that’s not going to make somebody give us the wrong answer just because of the way we asked the question?

In the research we did when we looked at the adult population, and that’s an average age of about 50 to 55, so a much older population than what we’ll be looking at now, many more of them alive during the period of active mining, some of them growing up in mining camps…

LJ: I’m sorry, was this the kidney study?

JL: Yes… It started out as the kidney study, and what we saw from very early on was that there were some other things that were emerging as also related to where people lived relative to the mines. It ended up that the kidney disease seems to be linked to exposures that occurred during active mining operations. Much higher-level exposures, people that grew up in the camps, played in the tailings piles, swam in the mine waste water. If you look at the much lower chronic exposures you would have just living near these mines, we actually got a dose-response kind of measure and that’s the key in toxicology. If you increase the dose, increase the exposure, you get a more severe response, and we actually could demonstrate that for hypertension.

Your odds of hypertension increase by about 50 percent with every additional way that you reported that you were in contact with waste. So just living within a mile of these waste piles increased your risk by 30 to 50 percent and then as you talked about using [mine waste as construction] materials in your home, or herding sheep on these [waste sites] or housing livestock in [an abandoned] mine, each of those increased your risk for hypertension until we got up to a three- or four-fold increase of likelihood for people who have lots of exposures. But the thing that was most amazing to us was that we also saw a relationship between those exposures and autoimmune disease and immune dysfunction…

LJ: And that was not anticipated?

JL: No, it was not. We actually included  questions about autoimmune disease as a control for use of non-steroidal anti-inflammatories. We didn’t think there would be any relationship there, but since non-steroidals are often prescribed and they can produce kidney damage, we wanted to control for them. And it turned out that people who reported having autoimmune disease, and we think people really did understand what that was, we’ve been questioned a lot about that… Working with IHS, we’ve now gone out and gotten blood samples and we’re seeing the same kinds of corroborating data from our mechanistic studies that we were seeing from the surveys. So those are just being finalized now. We don’t have all of those biological results and the clinical data pulled together yet, but from a preliminary level they do seem to be related.

Young people were not really involved in that first set of studies. People often talk about being concerned about what the exposures are doing to our kids. Because we have the data on the older people already and didn’t have data on the younger people, because we had Shields’s study, because that’s been a concern with the Gulf War, people have talked about the same kinds of malformations with exposure to depleted uranium, I think these were the reasons CDC and ATSDR [Agency for Toxic Substances and Disease Registry] decided that that would be the best use of the additional funds that Congress was appropriating.

It does kind of all follow, if you think about: if there is an effect on the immune system and that’s happening at an early age, that could indeed be a precursor to a lot of these later adverse health effects…

 LJ: From what I’ve read, the Birth Cohort Study is going to collect blood and urine samples, initially from the mother and then from the mother and child…

JL: And the dad.

LJ: …and the dad, if willing to participate. There are going to be environmental samples taken in the home, air samples I guess, water samples, this is quite a nice set of data…

JL: We hope so.

LJ: It sounds like it’s going to be a rich source for data, but also those are things that I’m sure people would have scruples about. Giving up blood samples, having people come into their homes, that sort of thing. And I’m sure that’s an area where the community involvement in the process is very important. Can you talk about that a bit?

JL: When we first designed this study we actually talked with some young women who were pregnant at the time and we were concerned with what kind of impact you have on stress during pregnancy if [researchers are] coming around implying that there is a problem and what we heard on more than one occasion was, “We already know this material is there, we already know it could be a risk to health and we would really like to know for sure whether it is or not.” The general sense was that there would be more benefit with the knowledge gained, for answering the worry questions, and it would actually be a stress reduction in the long term if it was done appropriately. But it’s still something that we worry about.

We also give people the option to not participate in specific parts of the study if they have objections, and still be included in the whole study. There are questions we’ll be asking that don’t require the full data set, about where people live and what the outcome of a pregnancy is, that don’t require us to take a lot of those samples….

I initially started the first study by feeling that we’re not collecting blood and urine because that’s very sensitive and we’ll just have to come up with a way to answer the question otherwise, look at convergent validity, you can do that. But it was community people that came up to me and said, “Wouldn’t you understand this better if you had blood and urine samples?” I said, “Yeah, but we can work with that….” And they said, “No, we’re going to feel cheated if you don’t do that. We’re going to feel like you did less than your best to get the answers and we want this to be comprehensive.” It was community members that met with the Navajo [Human Research] Review Board and talked to them and in the end the woman from the review board approached us and said, “This is not coming from you, I understand. This is something they want so we won’t stand in the way.”

Everything we do is scrutinized by the Navajo Human Research Review Board. Actually one of our co-investigators is a member of the board, and one of the nurse-midwives on the board is actively engaged in helping us figure out how to do the study inside facilities.

We’re also doing a huge amount of outreach, both on the chapter level and at public events, where we have people going in and talking about the study to the community. But we have also hired a gentleman named Malcolm Benally who is a Navajo filmmaker and author and he’s doing a whole series of vignettes of about a minute-and-a-half to three minutes that will be on YouTube and Facebook. We’re starting to use social media. Twenty-five percent of the births on Navajo are women 14 to 18 [years old] . It’s hard for me to say women, but if you’re having a baby you’re more than a girl. But to reach that sector of the population, they don’t go to chapter meetings, so we really need to find a new way to get information out there. Initially we thought that wasn’t going to work, because a lot of people don’t have internet connection, but when you walk into the library in Tuba City, you see it absolutely full…

LJ: People waiting in line to use the computers…

JL: …and they’re all on the computers and they’re all on Facebook and they’re all on YouTube…. [End of excepts.]

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