The Future of the National Children's Study: Science, Priorities, Politics
3:00 pm US Eastern Time
The National Children’s Study (NCS) would examine the effects of environmental influences on the health and development of more than 100,000 children across the United States, following them from before birth until age 21. The goal of the study is to improve the health and well-being of children.
The proposed federal budge released February 6th, has recommended several health promotion and prevention programs be cut, including the NCS.
This teleconference was a timely discussion on the current status and overview of the National Children's Study (NCS), why the study is important to organizations that work with children, and information about the ongoing legislative efforts that hope to restore funding for the NCS.
Call Moderator: Elise Miller, MEd, Executive Director, Institute for Children's Environmental Health, Coordinator, CHE Learning and Devlopmental Disabilities Initative Working Group
- Ted Schettler,MD, MPH, Science Director, Science and Environmental Health Network
- Phil Landrigan, MD, MSc, Chair, Department of Community and Preventive Medicine, Center for Children's Health and the Environment, Mount Sinai School of Medicine
- Jo Merrill, Director of Public Policy and Government Affairs, March of Dimes
- Karen Hendricks, JD, Department of Federal Affairs, American Academy of Pediatrics
1. Introduction: Eleni Sotos, MA, CHE National Coordinator
I'd like to mention to folks that have just come on the line that our next regularly scheduled CHE National Partnership Call is next week on March 22nd, at 9am PT, noon ET. We’ll be focusing on Endocrine Disruptors and Environmental Health—10 years after Our Stolen Future was published. It should be very interesting. We will be having Dr. Pete Myers, Dr. Theo Colburn and Dianne Dumanoski, on that call. They were the authors of that book.
2. Welcome: Elise Miller, MEd, Director, Institute for Children’s Environmental Health (ICEH), CHE LDDI Working Group Coordinator
I want to welcome everyone. I'm Elise Miller. I'm Executive Director of the Institute for Children's Environmental Health. I'm also the National Coordinator of CHE’s Learning and Developmental Disabilities Initiative. I'm very pleased that we could have this special call on the National Children’s Study.
I think most of you know that in the proposed federal budget, which was released February 6th, there are disease control and health resources and service administration. This could mean some major concerns for health promotion and prevention activity. One of the programs that is recommended to be cut is the National Children’s Study. That, of course, is why we are having this call—and why all of you are joining us.
We're going to start with our usual science update for the CHE call. Ted Schettler, who’s the Science Director of the Science & Environmental Health Network will provide that. Ted?
3. Science Update: Ted Schettler, MD, MPH, Director, Science & Environmental Health Network (SEHN)
I just wanted to very briefly describe 2 studies, which I think actually have a fair amount of relevance to today’s main topic. The first one is a very recently released study of an ongoing farm-worker’s study in California—in which the scientists examined 130 pregnant women and their newborns, to study the status of an enzyme that detoxifies organophosphate pesticides in these individuals. That enzyme is called paraoxonase, or PON. What it does is helps to metabolize organophosphate pesticides—and facilitates their excretion. So a low enzyme or PON status implies that the pesticide lingers longer in the body. The enzyme status is genetically determined.
These participants all come from a region in California where a large amount of organophosphate pesticides are used in commercial agriculture. More than 48,000 lbs are used, annually. Previous studies in this community have shown that people who live there have higher organophosphate pesticide exposures than people in other parts of the country. Studies in this same cohort that have been previously published have shown a relationship between higher organophosphate pesticide exposures and shortened gestational age in pregnancy, and abnormal reflexes in the neonates. Many of these participants worked in the fields during pregnancy, and 82% of them had agricultural workers living in their homes.
Here’s what they found. They measured the enzyme levels in these individuals—as I mentioned, genetically determined. Based on that, their data-predict. I'm going to describe findings for 2 different organophosphate pesticides, because their metabolism is slightly different. That’s why they separate them.
One of them is called diazinon. There's a range of sensitivity to diazinon of 26-fold within the newborns, and 14-fold within the mothers. That means that some newborns have a sensitivity that’s 26-times higher than the least-sensitive newborns. That range was 14-fold for the mothers. The range of sensitivity between the most-sensitive newborns and the most-resistant mother is predicted to about 65-fold. On average, newborns were 4-times more sensitive than their mothers to this pesticide.
Now, for the second organophosphate, which is chlorpyrifos, there was an estimated 130- to 160-fold range of sensitivity between the most-sensitive newborn and the most-resistant mother. That’s 130- to 164 times. On average, newborns are 8- to 10-fold more sensitive than their mothers. So the authors concluded, these data predict that most—if not all—newborns, as well as a sub-population of adults, will exhibit significantly increased sensitivity to organophosphate pesticide exposure.
These findings highlight the significance of understanding the susceptibility in young children to organophosphate pesticide exposure, and developing science-based risk standards for pesticide regulation, as required by the Food Protection Act.
That study—let me just very quickly comment on another one that’s being done across the country, at Columbia University. The scientists there have been studying mother-infant pairs for some time, now. They've shown that there's an increased risk of developmental delays and reduced scores on neurological testing of infants, in children whose mothers were more-highly exposed to chlorpyrifos during pregnancy, when compared to a lower-exposure group.
Well, interestingly, the findings were most-marked in a subset of women who were particularly economically disadvantaged, and had experienced material hardships during the previous year—including lack of food, clothing or shelter. Now, other studies also show the influence of yet another factor—that is nutritional status of mothers during pregnancy, on the neurological development of their children.
In conclusion or in summary, one might say that neurological development of children is influenced by exposures to environmental chemicals during fetal development, genetic inheritance, social circumstances and maternal nutrition. In order to more fully understand the relative importance of these factors individually and their collective interactions, prospectus studies that carefully examine a number of different variables are essential. That brings me back, then, to today’s call. Because this really is the intention of the National Children’s Study—which is the topic of today’s call—to begin to collect data on multiple variables—prospectively—in order to better understand some of these subtle and important interactions. I’ll stop there, Elise.
Elise Miller: Thank you so much, Ted. That was a very clearly articulated update, and obviously significant for this call. Thank you very much.
Is Dr. Phil Landrigan on? Has he been able to join us? It sounds like he isn’t available, yet. I'm sure that Julia or others are working to get him on the line. So we’ll turn to Jo Merrill, who is Director of Public Policy and Government Affairs at the March of Dimes. Jo—perhaps you could provide a little more of an overview of the status of National Children’s Study. I know that wasn’t your directive on this call, but just as a way to start us out. Then hopefully, Dr. Landrigan will join us. Jo?
4. First Speaker: Jo Merrill, Director, Public Policy and Governmental Affairs, March of Dimes
Sure. I really was going to talk about why the March of Dimes is in this. But I'm happy to. I think anybody who’s looked at some of the background on your website—which is great, actually—would have a good feel for the study.
This was something that was authorized in the Children’s Health Act of 2000. NICHD was given the lead as the lead agency, but it also had several others agencies involved, and the National Institute of Environmental Health Science—NIH—and EPA—and then there's a whole slew of other federal agencies that are involved in other ways.
Planning for this has been going on since the 2000 bill was signed into law. I guess the most-significant event was last fall when NICHD announced that the Vanguard sites—there were 7 Vanguard sites—were picked. They're the sites around the country that are actually going to do the piloting of the study. So we're in that stage, now—and hoping that we will get to the implementation stage, where another 101 sites would be added around the country.
This is a study of—we hope—100,000 children from before birth, in many cases, to age 21. At this point, it all rests in the funding—which is one of the reasons that I think we're having this call, too. I'm sure Phil will get on and be able to talk more about the details of the Vanguard site—hypotheses driven and all that. I really do focus on the legislative side, generally.
Let me just go into a little bit about the March of Dimes, and why this has become a very high legislative priority for us. As some of you probably know, the March of Dimes is a national voluntary health agency, founded in 1938 by Franklin Roosevelt, to prevent polio. Today, the organization works to improve the health of mothers, infants and children—by preventing birth defects, prematurity and infant mortality.
You can see that the National Children’s Study is closely allied with the mission of the March of Dimes. That’s why it has been a legislative priority for us since 2000. In fact, I think there were March of Dimes people involved with the planning even before it was authorized. Throughout the Children’s Study, there will be groundbreaking research that will greatly increase our knowledge of the role that family, genetics and environment play in childhood development.
In January of 2003, the March of Dimes initiated its current prematurity campaign—which is a 10-year project, focused on reducing the rates of pre-term birth in this country. Last year, there were approximately 500,000 babies born pre-term. That’s less than 37 completed weeks of gestation. And prematurity is the leading killer of newborns. Pre-term babies are 14-times more likely than other infants to die in the first year of life. And those who survive are often left with serious and long-term disabilities—including cerebral palsy, mental retardation, chronic lung disease and whatever.
Prematurity, obviously, is costly in economic terms, as well. In 2000, the total national hospital bill for premature babies was more than $18 billion. About half of that was paid by employers, and the other half by public programs—such as Medicaid. Finally, to make matters worse, prematurity is a growing problem. The rate has increased by nearly 30% since 1981.
So, the first stage of the Children's Study would yield critical information for research on prematurity. The study would start with—they want—pregnant women. Then, the infants. So we would expect the first results to come out after a couple of years. They would both—we think—give us very critical information on prematurity. This will enable scientists and clinicians to develop interventions, treatments and preventive measures to help these families.
In addition, the Children’s Study will generate information that will help to reduce the incidence to health of serious birth defects. Birth defects are the leading cause of death in the first year of life, and can cause physical and mental disabilities that last a lifetime. In 2004, there were 120,000 babies born with one or more significant birth defects, that we don’t know the causes for between 60 and 70% of them. So there's no more urgent need than to find the causes of these health problems. Something that can be accomplished—we think—through the National Children’s Study.
It’s so important to the March of Dimes, in fact, that our Office of Government Affairs staff—which is me and several others here—have been spearheading, with the American Academy of Pediatrics and others, an informal coalition to support this study. I think I’ll stop there, because I know you've got Karen from AAP, who’ll be talking about exactly what we've been doing on the funding side. Phil will probably bring people up to date on the latest efforts with a new coalition that’s been formed.
Elise Miller: Thank you so much, Jo. As you were speaking, I realized I want to acknowledge that there are a number of organizations whom I believe are represented on this call as participants who have been very instrumental since the inception of the study—or even pre-conception, so to speak, of the study—in developing the protocols and the priorities. So I really want to acknowledge that—along with the March of Dimes. There are others on the call, and I hope that you all will be able to speak up or ask questions toward the end of the call.
Karen, if you don’t mind, I'm going to call on you, next. Karen Hendricks is with the Department of Federal Affairs—the American Academy of Pediatrics—and has been focusing on the legislative efforts to restore the National Children’s Study funding, and also prior to this later iteration, they've been very instrumental in working toward getting the study conceived and implemented. Karen?
5. Second Speaker: Karen Hendricks, JD, Department of Federal Affairs, American Academy of Pediatrics
Jo Merrill, my colleague, has outlined some of the background of our partnership and of collaborating with our colleagues—primarily inside the Beltway, on looking at and focusing on, over the last several years, sufficient funding for, the National Children’s Study. Even as we speak, in a little over an hour, one of the amendments that we have all been toiling in the vineyards for the last week, is an amendment that would overall increase funding in the budget, by some $7 billion. That would allow more funding—at least in the Senate’s version of the budget resolution—for the Labor HHS appropriations, as well as - because it’s not focused on one aspect of Labor HHS - overall in the budget. That will prove to be extremely important, to ensure that NIH, CDC, the other agencies are at least attempted to get us back to the FY2005 levels. While that wasn’t perfect, it is a marked improvement from where we are. That’s one level of activity, looking at the whole of the National Institutes of Health, CDC and the like. And then obviously working on the parts.
There are two appropriations committees on the House and the Senate side. Because as you know, the funding is primarily spearheaded by NIH—NICHD, in particular. The preponderance of the money -- $7-plus million—is in NICHD. But the Centers for Disease Control and Prevention and EPA and the National Institutes of Environmental Health also at NIH are the other components. So it’s not just one. It’s not just a health subcommittee. But it’s also the subcommittee on Interior, Environmental and related Agencies of both the House and Senate sides.
Our task is going to be—as we've done over the last several years –- to really focus on those subcommittees. And, I would add now, with the named 7 Vanguard sites—and those 7 sites, and those 7 sites—I believe that it is the equivalent of 9 states. At that, that gives us 18 senators and well over 100—close to 200 members of the House—because of the size of 2 of the delegations, in particular. The State of California and the State of New York - that’s where our activity will be, once we move through the budget resolution, which is going on at least on the Senate side, now.
Our request for Fiscal Year 2007 is for $69 million. All efforts will be made in that direction. We will also, obviously, need to handle and manage the fact that the language in the budget resolution—in the president’s budget proposal—is quite clear, unfortunately. It’s all too clear that this study under the President’s budget request, as stated at the outset, no funds are included. And, in effect, plans to close down the study should occur at the end of this fiscal year.
So we do have our work cut out for us in that regard. I'm sure Phil will speak to that, as Jo mentioned. There is a new entity that is come about through the Vanguard sites, and their actions and activity. Their engagement of a former member of Congress, Congressman Jon Porter—who had been the Chair of the House Labor HHS and Education Committee before his retirement a few years ago. Their activities will proceed, and hopefully, we’ll all be working in collaboration, in utilizing a number of all of our tools that we have before us.
This is going to be as the entire budget will be—an opportunity. It is not about hearing from the folks inside of the beltway, and/or those hired guns. This really needs to be constituents and grassroots-based. Members of Congress will need to hear the importance of the study, what it brings to their districts, what it brings to this date, the interaction of the data and information that is provided while in the current 7 Vanguard sites. How that will impact the other sites yet-to-be started and determined. With that, I will move it on to Phil.
Elise Miller: Karen, that was very, very helpful. I so appreciate the American Academy of Pediatrics has been helping to spearhead the legislative approach to this. I'm very pleased that Dr. Phil Landrigan can join us, and that you all—I assume are—okay. I think maybe I’ll let people on the call know that Dr. Landrigan is Chair of the Department of Community and Preventative Medicine, and the Mount Sinai School of Medicine—and also the Director of the Center for Children’s Health and the Environment, there. And director of one of the new Vanguard sites for the Children’s Study.
Phil Landrigan: And a Fellow of the American Academy of Pediatrics.
Elise Miller: Well, there you go. Thank you. So, Phil, please—your remarks.
6. Third Speaker: Phil Landrigan, MD, MSc, Chair, Department of Community and Preventive Medicine and Director, Mount Sinai School of Medicine, Fellow, American Academy of Pediatrics
Excuse me if repeat any of what Karen has just gone over, since obviously I didn’t hear. We had a threat of a gas leak. It turns out what had happened was that there is some construction going on next door. It cropped back up to the air intake, and exhaust got into the system. But we decided that the better part of valor was to evacuate the building for a few minutes ’til it was clear. So my apologies.
What we have done and what the 7 Vanguard Centers have done, plus West End - the government contractor based in Rockville Maryland, who was serving as the coordinating center for the National Children’s Study. The 7 Vanguard Centers plus West End have gotten together. We've each ponied up money. We've gotten a little additional money now from a couple of foundations—notably, the New York Community Trust. And we have assembled a war chest of somewhat greater than a quarter million dollars to launch a campaign to save the National Children’s Study.
As Karen said a few minutes ago, we had the good fortune to recruit Jon Porter—a former member of Congress—and his team at the Washington law firm of Hogan & Hartson—as our Washington rep. There are a couple of points I'd like to amplify. First, let me explain why we chose Mr. Porter. We chose him, first of all, because he is who he is. He’s a retired member of Congress—a senior appropriator and a thoroughly decent human being. He also happens to be a Republican—which is something we were not oblivious to in the present political climate. But that’s only one piece of it.
The two things in his recent past history that particularly persuaded us to go with him were—Number 1—back about 4 or so years ago, when he was still in the Congress, he and a Congresswoman Nancy Pelosi from California, held joint bipartisan hearings on the topic of Children’s Health and the Environment. People such as Lynn Goldman, Richard Jackson, [inaudible] and I were all among the witnesses on that day. It was a very warm, good day. I remember Dick Jackson leaned over to me and said, "This is not going to happen again for a long time."
The other thing was that a year or so ago, the group of organizations—the American Chemistry Council, the March of Dimes, I believe the Academy of Pediatrics was there, the Catholic Bishops convened a Congressional briefing in DC about the National Children’s Study. The goal was to brief members—or at least their staff—on the Children’s Study. Jon Porter moderated that event. He was the maitre'd. I had a nice chat with him that day. I was one of the speakers. So I knew that he was quite knowledgeable about the study—morally and ethically committed to its support. We reckoned that there'd be very little learning curve, which we thought was good—because we knew we didn’t have much time. So it was for all those reasons that we picked him.
Fortunately, a group of 5 or 6 of the center directors had gone into Washington about a month or 5 weeks ago to meet with their supporter, before the President’s announcement came down. So even though we hadn’t yet signed the contract, at least we'd begun the conversation with him. That enabled us to move very swiftly, once the word came out from the White House. We now have a formal contract with him and with his firm.
It’s worth pointing out, a couple of the other senior associates in his firm who were part of the effort are Paul Rogers—the former Congressman from Florida, who a lot of us considered, within the architect of Medicaid, and on the opposite side, Robert Michel, who had been the Republican Minority Leader in the House for 10 or 11 years before Newt Gingrich took over that post. There's a strong element of bipartisanship here, and a great deal of expertise. Karen—did you talk about Specter-Harkins?
Karen Hendricks: I did.
Phil Landrigan: Did you hear her it just passed?
Karen Hendricks: I just got an e-mail to that effect.
Phil Landrigan: That’s the first step. There's now $7 billion that the Senate has indicated they want to see go into the 2 areas of health and education. Obviously, it’s only a first step. That’s only the Senate. And the House certainly hasn’t weighed in on that—nor has the White House. Even if it survives whatever compromise is made with the House of Representatives or the White House, then the second tier is to figure out—within that $7 billion—how does the pie get divided? And how much comes to the National Children’s Study. Those are all conversations for the future, but that’s a very cursory roadmap of what lies ahead.
Karen mentioned the organization that we've put together. Let me say a bit more about that. The organization is called, "The American Children’s Health Coalition." That’s the name. Lawyers in the Porter firm are busy setting up 2 organizations, properly registered with the IRS. The first one is a Title 501c4 organization. That is an organization that is legally permitted to lobby. Our first responsibility is to get that funded up, so that the lobbying work gets done. But we also stood up or are in the process of standing up a 501c3—which is the one that’s more familiar to all of us. It’s a tax-exempt organization which cannot spend more than about perhaps 15% of its budget on lobbying.
The importance of having a parallel 501c3 is that it creates a mechanism by which individuals or foundations can make tax-exempt donations. If we get sufficient funds raised, we can use the 501c3 to launch a national publicity campaign, and take on ads. That kind of thing—depending on how big the war chest is. We’ll keep you posted on that. But right now, the first priority is working inside the Capitol.
The final point I’ll make is that in our public presentations and our press interviews and the like, we have been working on getting a consistent message out there. I would like to commend this message to you for your consideration. Then if you have the chance to speak with members of the Press or public, you might want to use this line of approach.
Basically, the catchphrase that was coined by Dr. Ed Clark—who’s the Director of the Center at Salt Lake City—is that he says, "This is not a science project. This is about the future of America’s children." With that as a headline, he goes on to talk about rising rates of chronic disease in American kids - asthma, cancer and certain birth defects, the high and possibly rising prevalence of autism and learning disabilities. He makes the point that this is a study that will generate the data to give us the clues to preventing or ameliorating those conditions. He begins by putting the focus on children and the diseases that afflict children—not on the academic and probably other research findings.
A second question that comes up a lot is, people say, "Are you going to have to wait 21 years for findings that can mean anything?" The question is, "Absolutely not." We’ll begin to have data that will contain clues to prevention almost as soon as the first babies in the study begin to be born. Case-in-point, here in New York City, Dr. Ricky Perera at Columbia and our group at Sinai have been running studies for the last few years, looking at babies' exposure in-utero, to pesticides like chlorpyrophos, used to control cockroaches in apartments. We found, about 4 years ago - our two groups did - that babies who are exposed in-utero to chlorpyrophos were born with small head circumference, which is the index of impaired brain growth in-utero.
We took that information and parallel data that had come from some animal labs, on the toxicity of chlorpyrophos to the developing brain. We went to EPA in the Carol Brama era, and we persuaded EPA to ban residential use of the pesticide chlorpyrophos. Within 9 months, the effect of chlorpyrophos on children’s brains ceased to be. That’s an example of the kind of stuff that we should be able to get from this study, right away.
Finally, within the NIH complex in Bethesda, there's some kind of buzz going around that this study is not very good for assessing exposure. It’s not a very good study for assessing genetics. If you hear any of that, rebut it. Tell them that a prospectus study that measures exposure in real-time—which is exactly what the Children’s Study is—is far and away the best vehicle in the world for properly assessing environmental exposures to children. Because we have the great advantage over any study that has to look back in time. We're measuring exposures in real-time, as they take place. With regard to anybody saying that the genetics are not up-to-par, that’s false, too. We've invited the Human Genome Institute to send over the best and the brightest of their tools. We intend fully to incorporate them into the study.
That’s my position. We're fighting. We are not going to roll over for this. I cannot re-emphasize too much the 2 closing points that Karen Hendricks made. Number 1—this isn’t just about the 7 Vanguard Centers. This is about the 50 sites in 35 states that have already been selected by the National Institutes of Health to be the sites of this study, if the study goes forward. The obvious political implication of that is that most of the country is going to be directly and immediately involved in running this study. It’s not just a few elite medical institutions.
The final point, which is also from Karen’s playbook - we really need grass-roots support on this. It can’t just be the academics. This will not fly unless broad coalitions of concerned parents and grandparents and citizens speak up and write their members of Congress, write their senators.
Elise Miller: Thank you so much, Phil. That was a very thorough and helpful overview. I think all three of your presentations give us the kind of full picture of what’s happening. Really, moment-by-moment—given that the Senate passed that latest bill. We are now going to open up this call for questions.
7. Discussion, Q&A
Myrna Mandlawitz, The Learning Disabilities Association: I don’t want to throw any water on the proceedings, but Specter-Harkin has not passed yet. The vote has not occurred yet on that budget amendment.
Phil Landrigan: We got an e-mail a little while ago saying that they are now…
Myrna Mandlawitz: They're debating it on the floor, now.
Phil Landrigan: 7 republican co-sponsors—who are Chafee of Rhode Island, Cochran of Mississippi, Collins in Maine, DeWine of Ohio, Smith of Oregon, and Specter, himself, of Pennsylvani You're right. It hasn’t passed, but with that many republican’s, it’s considered to be a slam-dunk.
Karen Hendricks: The problem is that the ranking minority—the Democrat Kent Conrad—is not overly enthusiastic. There may be one or two democrats that won’t vote for it. So it’s…
Myrna Mandlawitz: We know in Washington, we don’t count the money ’til we see it. We're praying and we're visibly working it, but we don’t count the money ’til we see it.
Karen Hendricks: So the jury’s still out.
Elise Miller: Thank you for that clarification. Are there other questions?
Terry Nordbrock, Families Against Cancer and Toxics: I wanted to know—is it time for grassroots support already? I'm champing at the bit to send my letters. Is this the right time?
Karen Hendricks: I would submit that there's no time like the present time to get this started. I would strongly urge that you advise your community and your constituents and members that they need to be in this for the long-haul, and that you're going to be going back to the well several times.
I’d look at—as stated—the 7 Vanguard sites. Those are consistent jurisdictions and states. There were an additional couple of states because of multiple states involved with a site. Then there's a second tier - the second tier is those members who are on the Appropriations Committee on the House and the Senate side. There's going to be some overlap with those individuals who are also from the jurisdictions of the Vanguard sites—but better to be safe than sorry.
Then there's another third tier that would include those members of the House and the Senate on what are known as the "authorizing committees." That would be on the Senate side. The House, Education, Labor & Pensions Committee, and the Education & Labor committee, on the House side. I'd actually throw in the Energy & Commerce committee, since they do so much related to healthcare. Then a fourth tier is the leadership of both the House and the Senate. The leaders need to know that this is an important issue.
In a variety of layers, go to the folks that you know well within your community. Not to forget that to the extent that you're working individually and collaboratively, that’s also a help. Volume is going to count. The reason and the necessity and the importance of the study needs to be clearly made. And noting that this is both a time of shared pain—as has been articulated in deficit reduction—this is not the place, when you add up everything else that children have not received, and the benefits that they have not gotten since this last 4-month period between cuts to Medicaid and potential cuts to discretionary programs. It’s in our best interest to move forward.
Andy Edgar, Minnesota: I do a special kind of teaching at a variety of schools and festivals throughout Minnesot It’s juggling sticks. I am interested in when I get paid to do that teaching, to use that money to help assist in the funding of the NCS. I was wondering if there is information that I could pass out to teachers, and for students to take home to parents, that would be good to promote this, and make a good public ad campaign.
Phil Landrigan: The answer is, "Yes, there will be, but it isn’t just yet," because we're hastily cobbling together the next attorney legal papers. If you’ll send me a quick e-mail, I’ll hold onto your name. As soon as I have the information you're requesting, I’ll gladly send it to you. Or Elise, I could send it to you, and you could just put it out to everybody on this call.
Unknown Speaker: I'm interested in knowing whether or not this study… I did get to the APHA presentation of this study last December. But are we going to be able to pull out urban centers by all the other things I've seen on the website? Urban centers. Because all the sites in New Jersey are sites that have no urban center. So the state data does not help me. I'm wondering if we're going to be able to pull out urban centers separately from some of the other geographies.
Phil Landrigan: The answer is, "Yes." The way the sites were selected is that in the aggregate, they are intended to be representative of the American population. Or more specifically, to be representative of the babies that are born during the 4 or the 5 years of recruitment of the study. There was also a very deliberate effort made when those sites were selected, to include urban, suburban and rural. Indeed, you’ll see that next season among the Vanguard Centers.
The study was not set up in such a way that it’s going to give data that’s specific to any one state. It wouldn't give data that is specific to New Jersey or to Wyoming or to Californi It’s going to give data to cover the US. But then within that, there’ll be enough data that we can seek about the Northeast, Southeast, Northwest, Southwest—and also about urban, suburban and rural.
For example, the center that we have here in New York is the borough of Queens. It’s intensely urban. A whole range of income—from wealthy to very poor. The nation’s most-ethnically diverse community—with 150 different languages spoken. But I think we're going to learn things about urban centers that will be applicable to cities like Camden.
Myrtis Sullivan, Great Lakes Pediatric Environmental Center, Chicago: I have a question for involvement with the Vanguard. I had contacted the lead person of the Vanguard in Wisconsin, because we at UIC - A number of us in epidemiology and maternal and child health - and also people over at Stroger Hospital, which is one of the largest public hospitals in the country - we had expressed interest in working with the center.
I don’t know how proactive the Vanguard Centers are in trying to elicit help—especially in large urban cities. Metropolitan areas like Chicago. If they want grass-roots support, people who work at a public hospital certainly should be part of it. I think that they may have to be a little bit more aggressive in getting people involved in their region and especially in the city—like Chicago.
Phil Landrigan: Obviously, I can’t speak for the folks in Wisconsin, but I’ll answer it generically. The first responsibility of each of the Vanguard Centers is to recruit the designated number of children—which is 250 a year—in the geographic area that they've been assigned. The Wisconsin people have been assigned Waukesha County, which is just west of Milwaukee. That’s their primary responsibility.
Now, there's been a great deal of talk among the Vanguard Centers, about doing what are called, "adjunct studies." The adjunct studies are supplementary studies that would be done in addition to the core. I know, for example, our center here in New York City has been actively inviting adjunct proposals. We've gotten 4 or 5 beauties.
Obviously—given the current funding crunch—we've not been able to move forward with any of those. But we have been reaching out to people in the various communities - academic, concerned citizens, NGOs, groups that are concerned about particular diseases, and communicating with them. That might be the way to. The trouble is, it’s not going to move until the core funding is in place.
Myrtis Sullivan: I know. But then there's the Catch 22. How can we go to our congress people to say, "We think this is so vital?" Which we do and we will do, anyway. But it doesn’t lend a lot of credibility. And we're not really participating in any meaningful way.
Phil Landrigan: I know. I've been in touch with some people in your institution, like Peter Orris and Daniel Hryhorczuk. My understanding is that Chicago, itself—or Cook County—or one of your counties right around Cook is slated to be picked up on the next wave.
Myrna Sullivan: Yes. Will and [inaudible], and I think those are the 2. But that’s not Chicago.
Phil Landrigan: Okay. But that’s the way you can get most-directly involved with it in your own state. But in the meantime, all I can suggest is that you speak to Maureen Durkin and Christine Kronk, who are the two principle contacts.
Myrtis Sullivan: I did call her, but they didn’t do anything.
Phil Landrigan: I think right now, they're frozen until we know what happens with the money. Because nothing can happen until we have that.
Myrtis Sullivan: That’s what I'm saying. We really want to get involved with some of this grass-roots effort. Even if—as I know—everything’s on hold.
Phil Landrigan: Send me an e-mail, and I’ll be glad to speak with Chris and Maureen, because I’ll be with them next week. We're all going to be together.
Myrtis Sullivan: We want to try to support them, because we know in the future that we could probably have some type of collaborations.
Phil Landrigan: I'm sure you will.
Myrtis Sullivan: We'd like to support in this grass-roots effort.
Sandy Keen, New Jersey: I'm with several environmental groups. Also, an affected concerned citizen. We were contaminated with certain contaminants in our are Where does New Jersey stand? I want to go to Congressmen and legislators, now, on certain things. Where does New Jersey stand, in all this?
Phil Landrigan: A list has been published by the National Institutes of Health of the [inaudible] that have been selected. If memory serves me correctly, there are several New Jersey counties that were picked up. But because I had to evacuate my building just when I would have been preparing for this phone call, I don’t have the list in front of me.
Karen Hendricks: Those counties are Burlington, Middlesex, Passaic and Warren.
Phil Landrigan: Thank you.
Sandy Keen: Gloucester’s not in there?
Phil Landrigan: Apparently not. No. It was just selected counties, which—as I said a few minutes ago—in the aggregate, are supposed to be representative of the whole United States. But clearly, it’s like a Nielsen Survey, where some people are picked and others are not. It’s the luck of the draw.
Sandy Keen: So, in other words, the county can’t come in now? CDC did a study on us years ago, back in '97. At that point…
Phil Landrigan: Is that Brick Township?
Sandy Keen: Monroe Township. We've been a Superfund and a Spillfund. At that point, it was conclusive of the problems. It was inconclusive of the contaminants causing the problem. That’s where I want to push, especially. I'm involved with the schools right now, and I would like to - health is important, because I'm a paramedical aesthetician, so I see a lot. That’s one area I'd love to push. Would it help us, in other words?
Phil Landrigan: I think the issue… I can’t speak for the National Institutes of Health, but my understanding is that they have basically selected a group of counties, and they knew from Day 1 that there were many, many counties with problems that they weren’t capturing. The target was to do 100,000 children who would be a statistical example of the whole country.
The reality is that 4 million babies are born in this country every year, and there was no way they could ever get sufficient budget to enroll every baby in this study. So they had to select certain counties and exclude others.
Sandy Keen: Thank you.
Kathie Lawson, Learning Disabilities Association of America: As many of the other organizations on the line have said—LDAS has been working long and hard to support the National Children’s Study. I was wondering—will there be prepared meeting materials available through the American Children’s Health Coalition, so that we can all stay on point? Such as templates for letters-to-the-editor?
Phil Landrigan: That is the intent. Yes.
Kathie Lawson: When do you think that might be?
Phil Landrigan: Within weeks. Right now, we're just… It’s like a rugby game, and we're in the scrum there, in the Senate. But as soon as we get a little breathing room, we're going to start putting that stuff together.
Elise Miller: Do let me know, so that I can circulate—or CHE can circulate—that information more broadly.
Phil Landrigan: Will do. Thanks.
Karen Hendricks: Elise, this is Karen Hendricks. For those folks who want… Tuesday, March 21st, there is a Senate briefing that will be held, that Senators John Thune from South Dakota and Tim Johnson from South Dakota have convened. It starts at 1.30 to 3.00. If you all have a little time making calls to the 100 members of the Senate, and urging their staff to attend, it would be most helpful. And a little immediate gratification for us all.
Michael Lerner, Commonweal: I have a question for Phil Landrigan. This is a question I've heard from others who are deeply supportive of the study, but have the following concerns. The concern is that you might get some funding, but it might get cut back enough so that the initial intensive screening processes might be compromised. Therefore, the capacity to really learn from the follow-up would be deeply compromised.
The question is, "What protects the National Children’s Study from marginal funding, if it were to succeed, in a way that the expensive early-screening processes were hurt, and therefore, the whole study is hurt as a result?"
Phil Landrigan: I think that perhaps the concern is overstated. The logistics for the early screening are that women will be recruited into the study as early as possible, in pregnancy. In fact, the hope is to recruit 25% before they conceive -- women of the other appropriate age, who are trying to get pregnant. Then, the plan is, as soon as these women sign up—either just before conception or shortly thereafter—to get samples of body fluids from their blood and urine, basically. And send those off to CDC for chemical analysis. I think that’s the critical element.
The two critical elements are—1—the timing of the recruitment. Namely, very early in pregnancy. And—Number 2—the collection of the samples that go to CDC. If we can maintain sufficient core funding to accomplish those 2 steps, everything else follows.
Michael Lerner: So there's not a problem with expensive exposure monitoring?
Phil Landrigan: A lot of us think that the very best exposure monitoring consists of monitoring the internal mirror of the pregnant women. After all—the environment in which the fetus—the unborn child—lives. If I had to make a choice, if I had limited dollars, I would get those fluids on the moms before I spent dollars doing—for example—dust sampling or air sampling.
Michael Lerner: That’s very reassuring. Thank you.
Betsy Easterson, psychology student, Corona, California: I'm wondering… I could be biased. I'm a mother of a 3-year-old autistic boy. I'm wondering what the drive is with this autism… It’s up 600% in 9 years. Be it environmental cause or be it whatever is to blame, the great importance of it. and being a mostly neurological problem. What is the drive with that?
Phil Landrigan: Let me begin by answering that autism is very much on the list of conditions that the National Study is given finances to. The numbers here—that I understand—is that approximately 1 baby out of every 166 babies born now in the US is autistic. So that means, in every 1,000 babies that are enrolled into the study, we’ll get 7 or 8 with autism. If we do get the funding to recruit the full 100,000, then we’ll have somewhere in the neighborhood of 700-800 children in the study who develop autism.
From the cold-blooded perspective of a statistician—not the human perspective, obviously—but from the statistical perspective—those are good numbers. With that many children in the study who have autism, I think we have very high statistical probability of being able to capture environmental factors that cause autism or trigger it or predispose to it, or that interact with the genes that may also be involved in autism.
Betsy Easterson: Sounds right.
Phil Landrigan: Compared to—for example—a few years ago. The CDC ATSGR did a very intensive study in the Jersey Brick Township, where somebody from New Jersey… We don’t know the exact numbers, but my recollection is 15 or 20 children with autism. That was considered the biggest filed study of looking for environmental causes of autism, I think, to this time. So do the math. It’s 15 and 20 versus 700 or 800. We’ll have a much higher likelihood of capturing what might be there.
Becky Easterson: Thank you. Absolutely.
Elise Miller: We're going to have to wrap up, right now. I just wanted to thank all three of our speakers. It’s been incredibly informative. We will have follow-up information on the CHE website. I just want to now turn it over to Eleni for the final comments and logistical information.
Eleni Sotos: Thank you, Elise. I just want to mention, for folks that came on the line a little late, that our next regularly scheduled National Partnership Call is scheduled for next week, March 22nd, at 9am PT, noon ET. The topic is, "Endocrine Disrupters and Environmental Health," 10 Years After the seminal book—Our Stolen Future, was published. If you would like to join that call, please e-mail Julia Varshavsky at Julia@HealthAndEnvironment.org.
Thank you everyone for joining us, and thank you to the speakers. We look forward to talking with you on next week’s call. Bye-bye.