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“A Professional Responsibility”: Advocacy and the Healthcare Professional

Interview with Richard Clapp, DSc MPH

What is your experience as a healthcare advocate?

In 1974 I was the director of a community health center in Lynn, MA, freshly out of my MPH. We had a lead poisoning prevention program that was funded by the federal government through CDC. Senator Kennedy came to visit our health center to see how the lead poisoning program got integrated into the child health program. I hosted him in my office. I got to show Senator Kennedy in a concrete way at the grassroots level how the program was working. He was very appreciative, and actually asked the director of our lead program to come and testify before his committee. That was my first direct contact with an elected official to, if not advocate, at least verify the efficacy of a federally funded childhood lead prevention program.

Then I became director of the Massachusetts Childhood Lead Poisoning Prevention Program in the Department of Public Health, and in that capacity had to provide testimony in legislative hearings at the state level. What is the status of lead poisoning in Massachusetts? How bad is the picture? What’s being done to mitigate lead poisoning? What was the state program’s efficacy?

In 1980, I got hired to set up and run the state cancer registry. The reason we had a cancer registry was because of the Woburn childhood cancer cluster. I would make periodic personal visits to the office of the state legislator who had filed the bill establishing the state cancer registry. He was interested in how quickly it was being set up and the roadblocks that were in the way. That was not so much advocacy as providing a status report to the state legislator who was interested because of Woburn.

One of the things I did at the state cancer registry was keep track of cancer in Vietnam veterans. There was a report that I did for another state agency about cancer in Vietnam vets; that was in 1984 or ’85. As a result of that, I was asked to go to the US Congress and testify under oath to a Congressional Committee on Veterans Affairs. It was on C-Span. I was there in my capacity as the Director of the state cancer registry. The report showed that Vietnam veterans in Massachusetts died to a much greater degree from a soft tissue cancer called sarcoma if they were in Vietnam as compared to veterans who were in the service at the same time but who didn’t go to Vietnam. This was an internal comparison among veterans. I testified about that in front of the congressional committee. Ultimately that, and other people’s testimony, led to the passage of the Agent Orange Act of 1991 saying that Vietnam veterans should be compensated if they get certain diseases. In the initial Act, one of the diseases was soft tissue sarcoma. So I actually felt like my testimony had something to do with that, and helped provide scientific evidence.

Most recently, I testified in front of a Congressional committee about Camp Lejeune veterans. I testified just last September on that. The subcommittee was interested in the fact that Camp Lejeune Marines were exposed to contaminated drinking water for decades. For part of this period the Navy officers who ran Camp Lejeune knew it and didn’t tell the Marines who were living there with their families. The Marines are furious. They’ve been advocating for a bill to compensate the Marines themselves or their family members for diseases they got that might be related to the chemicals that they were exposed to in their drinking water. It turns out that two of the same chemicals were in the drinking water in Woburn, MA, so I testified about that. Childhood leukemia was the outcome of most concern in Woburn. The bill is called the Janey Ensminger Act – named after a girl who died of childhood leukemia. She was born, raised, got leukemia, and died on Camp Lejeune. Janey’s father Jerry is the leader of the group that’s been advocating for compensating Camp Lejeune veterans.

Have you had the experience of speaking with a legislator or staff hostile to your cause?

Sure. In fact that first committee on veterans’ affairs, that was an adversary situation. When I was testifying under oath in front of this committee, with spotlights and C-Span, I felt like I was in court and this guy was a defense attorney trying to defend some company for their polluting activities. He was a legal staff member of the minority chair of that committee. He was acting like a corporate lawyer as far as I was concerned.

Most other times I’ve met with friendly staff. They just want to know what’s the science, and what is the epidemiological evidence for what you are saying, and how can they buttress with the science whatever it is that they are doing in their legislative work.

How do you prepare for these meetings?

We know ahead of time what the topic is, and usually we even know what specific information they are going to be looking for that’ll help. So I bring my references. I bring copies of papers and hand them to them. For a fairly recent meeting, I went to a meeting of congressional staff working on a bill to ban or phase out BPA [bisphenol-A]. This came in the context of the President’s Cancer Panel report. The panel said BPA looks worrisome, and European countries and Canada have taken steps to ban or restrict it. So at this meeting they wanted to know what the scientific basis was for what the President’s Cancer Panel said about BPA. We knew ahead of time that’s why we were going there. I was part of a team of four people, set up by the Breast Cancer Fund.

What is unique about the healthcare professional advocate?

Every congressperson has a physician, and so they have a kind of predisposition in general to listen to and take seriously the physicians who are taking the time to do advocacy. There’s a certain natural cachet that comes with physicians taking the time to do that kind of work. As we all know, physicians generally avoid doing that kind of work, because it takes them away from their practice, it may get them involved in something that’s controversial, their colleagues might express disapproval – all that is part of the internal culture of the medical profession.

People like me who are not physicians, but with a doctorate in a relevant science like epidemiology or toxicology, we bring science to the table. We don’t have the cachet of caring for patients, so I think we carry less weight with congressional representatives and their staff. But we still have scientific knowledge and the ability to weigh evidence and put it on the table. Public health, though it often doesn’t rise to the top of a congressperson’s list of priorities, it’s not something that’s dismissed readily. So talking about the broad public health impact of something like lead paint on children’s neurological development, even as an epidemiologist, carries some weight.

Do you have any advice or tips for someone interested in doing advocacy work for the first time as health professional?

Stay within your strength. Or in the baseball analogy, if you’re a hitter, stay within yourself. Don’t try to overreach. Don’t try to express an opinion beyond something you feel comfortable with or something you feel knowledgeable about. The other thing is, try it. See if you like it. Some people won’t like it. But try it. And if you do like it, figure out ways to keep doing it, and organizations like PSR will provide the venue and make the arrangements to meet with the legislator’s staff. You don’t actually have to spend time trying to track them down and get on their schedule and do it yourself. Work with some organization that can do it for you, and then try it. I think it’s part of our professional responsibility, actually, to speak out about policies that are health protective.


claude said ..

DR.Clapp&DR.Portier,PHD.(CDC,ATSDR,NIEHS,etc.)Both did yr,s of studies @ Camp Lejeune N.C.on toxic water some hunderd Of times higher then MCL.They turned the reports over to the gov.the contaminated water was from (1952-1986).On the report It stated (the worst contamination On record.(pce.tce,mce.benzine,V.C.etc.)I was @Lejeune as A MARINE SGT.from 1971 to 1976 @ hadnot PT.The worst contamanated wells.WE(drank,showerd,had meals made with IT).OK,now that the studies are done no help for the people that are sick or passed away(families).My own case?My son was born at Lejeune(1974)with nero.problems,wife died of breast cancer @42.I,ll need a liver transplant(end stage)I have other med.problems. I filed A claim with VA 1 1/2yr,s later they turned me down same as 84% Of Lejeune claims.The gov. past law to help but it,s up to the VA.this IS not about me(I,m 60)It,s about the 500,000 to 1 mil.people It,s killed or made sick.The DR,S did a great job putting the studies together.Then the Gov.& VA drops the ball.The gov.for family,VA for VETS.These people just get forgotten.So it dosn,t do much good to find the toxins and not help those exposed.thanks for reading this.Claude,

February 6, 2014

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