“A Professional Responsibility”: Advocacy and the Healthcare Professional
July 28, 2011
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
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
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
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.