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Eric Rosenthal reports

Melanoma Advocacy Groups Continue Battle over Claiming Credit for DoD Funding

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doi: 10.1097/01.COT.0000352157.57627.56
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In the small but highly competitive world of melanoma advocacy the battle continues over claiming credit for the $4 million allocated late last year to the Department of Defense's Peer-reviewed Cancer Research Program for research in melanoma and other skin cancers as related to deployment of service members to areas of high exposure.

OT initially reported (10/25/08 issue) that a “secret Congressional champion,” who had been one of several federal legislators lobbied largely by the Melanoma Research Foundation (MRF), was responsible for securing the funding, according to the Foundation.

That article was updated (12/10/08 issue) when it was learned that at least one of the secret champions was Congressman Charlie W. Dent (R-PA), who had worked closely with the Melanoma International Foundation (MIF), which had not been mentioned in the October story.

At that point it seemed the record had been set a little straighter and that the successful lobbying effort had been the result of a number of actions by various advocacy organizations.

But then on April 8, a news release from the Aim at Melanoma Foundation (described on its Web site as the largest international melanoma organization focused on melanoma research, education, awareness, and legislation) said that it had secured $4 million in federal funding to study the effects of UV radiation on service men and women overseas, and that “it was announced at the CDMRP [Congressionally Directed Medical Research Programs] meeting in Washington, DC, that Valerie Guild, the President of Aim at Melanoma was responsible for securing the funding,” which “came as a result of collaboration between Aim at Melanoma and the US Military, and was key to getting melanoma included for the first time ever in the Department of Defense's peer-reviewed cancer research program.”

It included a quote from Ms. Guild that “this effort could not have been accomplished without the invaluable help of the US Military….”

The problem, though, was that the release offered little context and was factually inaccurate, causing a bit of an uproar among the melanoma advocacy community as well as concern within the halls of the DoD's Congressionally Directed Military Research Programs.

Asked for Wording to be Changed

Asked about it for this article, US Navy Captain E. Melissa Kaime, MD, Director of the CDMRP—a research area directorate of the US Army Medical Research and Materiel Command—said that she had e-mailed Ms. Guild to change the wording of the announcement on AIM's Web site: “I expressed a concern that I wanted it made clear that the Department of Defense and our office in particular does not lobby for funds from Congress. We are an execution office that follows through on the direction of Congress, and it was important that be clarified,” Captain Kaime said.

As of press time for this article, however, several weeks after the request was made, the AIM Web site still contained the language referring to collaboration with the military.

The reference to the CDMRP meeting was removed and now said that it was announced that Ms. Guild was “instrumental” in securing the $4 million, and the release continued to misrepresent the research as studying the effects of UV radiation rather than studying melanoma and other skin cancers.

The AIM release, OT learned, was a result of an unsolicited statement made during a February 23–24 stakeholders meeting convened by CDMRP to gather scientific and clinical experts as well as advocates, survivors, and consumers to discuss the four recently funded topic areas (melanoma and skin cancers, as well as pediatric brain tumors, genetic cancer research, and non-invasive cancer ablation research).

About 50 people met to look at the current state of the science and ascertain what gaps in research needed to be funded.

The next steps in the process include appointing a scientific peer review panel to evaluate the science, and an integration panel for programmatic review to help to advise and make recommendations about which proposals will best fit the gaps that have been identified.

Capt. Kaime said that program announcements will be coming out this summer.

The statement lauding Ms. Guild was made by Col. Aizen J. Marrogi, MD, Chief of the Army Medical Corp's Chemical Biological Program at Walter Reed Army Medical Center.

Capt. Kaime said that Col. Marrogi had not been selected to attend the stakeholder's meeting, but had asked to invited, something that was not unusual for those with an interest in the topic.

The colonel told OT during a telephone interview that he was a dermatopatholgist, a pathologist, and a skin pathologist who had seen a lot of skin cancers as well as malignant melanoma in the military.

“My suspicion is that because of the cycle of deploying people in and out of areas like Iraq and Afghanistan and elsewhere with high exposure to UV and because of the nature of the environment I expect that 10, 15, 20 years down the road we will see an increase in these diseases.”

He said he had written a “white paper” on the subject to “highlight and make people aware that that the Department of Defense is interested in finding solutions for some of these problems that are going to be upon us.”

“The purpose of the white paper was to state a problem and then state a solution for that problem…. The white paper was submitted through the Army chain of command abut a year ago, and usually it gets picked up by a legislator and will find a champion with the help of some of the advocacy groups.

“I was very fortunate to work with Valerie Guild from AIM, and she found some sympathetic ears, and we were successful in securing some funding. All of the credit should go to her not to me,” he said.

Col. Marrogi explained he had written many white papers and that usually without a white paper there is no Congressional funding.

He said he had known Ms. Guild for several years and that they had originally met on a tissue bank committee and he had invited her in the past to give a talk about her effort in tissue banking for melanoma.

Ms. Guild had asked him to write the white paper since “she knew some people on the Hill and approached them and they asked us to submit a white paper.”

He said the DoD appropriation line was verbatim from his paper, and that the document was not a publication and was only for internal use.

He said he was unaware that AIM had issued a press release referring to his (unattributed) comments about Ms. Guild's responsibility for securing the $4 million, which had made it sound as if the announcement was an official part of the meeting.

Capt. Kaime said she had not seen and was unaware of any white paper submitted about melanoma and skin cancers and the military, but said her office was not a part of the process that preceded the Congressional direction of research funds.

“We are the executors of the funds that Congress has determined for us, and I can't speak on what is required [beforehand],” she said.

‘Try to Be as Inclusive as Possible’

Capt. Kaime, who is a medical oncologist and hematologist, said her office was appreciative of all those who worked behind the scenes—“those whom we know and those whom we will never know”—to make the funding possible.

“We try to be as inclusive as we possibly can and certainly in our stakeholders meeting we invite far and wide all the different viewpoints. Sometimes we don't get everyone invited who would have liked to have been there, but it's not from any intentional slighting and we're not trying to exclude anybody.

“We try to stay focused on what we need to, and oftentimes statements are made with very good intentions and not realizing that people may take it a different way.”

She added that laypeople on the various DoD panels had the same full voting rights as the scientists and clinicians, “so they are fully incorporated into both the scientific and integrative panels on all levels of review. It [having survivors] brings a sense of urgency and grounds us as to why we are doing this and what the research is ultimately trying to do.”

During the course of writing this article, I was contacted by a representative of one of the other melanoma organizations who didn't want to be identified.

He requested that the story be held until after June since “this infighting might hurt future funding efforts with Congress.” He said he didn't think this was much of a story.

Important to Clarify Misconceptions as Soon as Possible

That thinking, though, was contraindicated by the advocates and CDMRP officials who spoke both on and off the record about the importance of clarifying any misconceptions as soon as possible.

C. Randy Lomax, Chairman of the Melanoma Research Foundation, was one of the attendees at the February stakeholders meeting when Col. Marrogi made his comments.

“I was quite surprised to hear it announced at the meeting that Valerie Guild was responsible for the $4 million since I thought it was a collective effort and that [lobbyist] Ed Long had reached out to others,” Mr. Lomax told OT.

He said that the $4 million allocated for 2009 was narrowly defined for people in the service and that he hoped that the 2010 budget (which has yet to be championed and approved) would say something about men and women and their families.

Neither Mr. Lomax nor others spoke up at the stakeholders meeting to correct the announcement at the time it was made, probably because it would have seemed petty to do so; however, several sources requesting anonymity said that many concerned private conversations ensued about the veracity of the statement and the underplaying of their own efforts.

Catherine M. Poole, President and Founder of the Melanoma International Foundation, was not among those invited to the stakeholders meeting, but that was “an administrative oversight,” according to Capt. Kaime.

Speaking about the AIM press release, Ms. Poole said, “I am disturbed that this reflects poorly on the melanoma advocacy community, and that the information in the press release was factually incorrect about where the money came from and what it was being used for.”

Ms. Guild refused to speak with OT at all about the subject.

Dan Meyers, the public relations contact for AIM on the press release, said that he couldn't make Ms. Guild speak with me, and didn't understand why she wouldn't. He said he had met Ms. Guild several weeks earlier at a trade show and had been hired to write the press release, which he said he didn't know was misleading, and that he had no way of checking its validity.

He also said he wasn't quite certain if he'd retain AIM as a client.

© 2009 Lippincott Williams & Wilkins, Inc.
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