From the TMS Board > Board News > Summary of 2008 AAAAI Mast Cell Disorders Task Force Meeting

Summary of the AAAAI Task Force on Mast Cell Disorders Meeting

By Val Slee, TMS Co-Chair

(Released April 23, 2008) I was honored to be the TMS representative to the Task Force Meeting on Mast Cell Disorders at the American Academy of Allergy, Asthma and Immunology Meeting in Philadelphia, Pennsylvania, on Saturday, March 15, 2008. Members of the Task Force include the following esteemed physician researchers, although not all were able to be present at the meeting:

Mariana C. Castells, MD PhD, Chair	Terry C. Chin, MD	Yoseph A. Mekori, MD
Cem Akin, MD PhD, Vice Chair	Luis Escribano, MD PhD	Dean D. Metcalfe, MD
K. Frank Austen, MD	Mario Geller, MD	Menachem Rottem, MD
I. Leonard Bernstein, MD	Brett V. Kettelhut, MD	Lawrence B. Schwartz, MD, PhD
Joshua A. Boyce, MD	Arnold Kirshenbaum, MD	Stephen I. Wasserman, MD
Joseph H. Butterfield, MD	Nataliya M. Kushnir, MD
Melody C. Carter, MD	Ravi Malaviya, PhD	AAAAI Staff: Tiffany M. Schuster

After we all introduced ourselves, the first topic of conversation was the European Competency Meeting on Mastocytosis in Paris in November. Apparently, there was a transit strike at the time of the meeting, but Dr. Akin was still able to get to the meeting and give us a report on it. (other Task Force members were also there.) The ECNM are interested in collaborating on a meeting to revise the existing criteria for Systemic Mastocytosis, and that meeting is being planned for 2008/9. The Task Force discussed some of the different methodologies used to collect information about patients with mast cell disorders here and in Europe, and some of the problems that each method would present in terms of validating or quantifying the data collected.

Dr. Castells then introduced a proposal that she has already put through the proper channels for a meeting to define the Mast Cell Activation Syndromes! The meeting would occur in 2009, hopefully one to two days before the AAAAI in Washington DC in March, and would be funded at least in part through the NIH Rare Disease Section. Dr. Castells was asking for ideas for additional funding for this meeting. I encouraged her to submit a Research Funding Proposal for a TMS grant, since we are offering a grant this year, but there was some discussion about whether or not there might be a conflict of interest. (Note: later in the AAAAI conference, Dr. Castells told me that she had obtained a verbal commitment for funding for the rest of the meeting!).Other members of the Task Force offered numerous suggestions about where she might seek funds for this very worthwhile project. This meeting to name and define the Mast Cell Activation Syndromes is, of course, what TMS has been hoping for and working towards for years, and we are so indebted to Dr. Castells for taking this step to make it happen! Dr. Dean Metcalfe made the point that we want to be very careful to identify Systemic Mastocytosis as the neoplastic (he may have used the word malignant) clonal disorder that it is, because once someone has the diagnosis, they have trouble getting insurance, getting work, etc. In addition, he spoke with great compassion about the suffering endured by patients that have undergone cytoreductive therapy, and he stressed that one must be very sure of a diagnosis before selecting treatment regimens for patients with mast cell disorders.

The next person that was introduced to speak was…me! And since I had not received an agenda in advance, I was surprised to see that I was scheduled to speak on the TMS Video Grant Project on Mast Cell activation Symptomatology. However, I have been working on this project for weeks, along with preparing for the AAAAI, so it was actually very easy for me to discuss the goals of the project with the Task Force. It did generate some interesting and lively discussions! I explained how important it is for us to recognize that there are patients out there with symptoms of mast cell activation from mast cell mediator release, who do not have biopsy proven systemic Mastocytosis, who have their symptoms dismissed once they are found not to have met the diagnostic criteria for SM. This video is about the symptoms of mast cell activation—teaching physicians to recognize them as being related to mast cell activation and degranulation, and once the symptoms are recognized, then diagnosis and treatment can follow.

New clinical trials were discussed next. Dr. Butterfield from the Mayo Clinic is still running his Tamoxifen study, and that was discussed.

Dr. Castells then explained that a Task Force usually lasts for about three years, and then it either goes on to become a committee, or it has outlived its usefulness and is shut down. She put forth a proposal to make the Task Force on Mast Cell Disorders into a Committee, and the Task Force members agreed that they wanted to go on if approved. The proposal will be submitted to the AAAAI, and we should hear within a few weeks if we have a new Committee on Mast Cell Disorders! (Please note: The application to elevate the Task Force on Mast Cell Disorders to Committee Status has since been approved!!!!)

All of the members of the Task Force brainstormed ways to increase awareness for mast cell disorders not only among researchers, but also at the AAAAI, so that we can increase the amount to attendees to sessions concerning mast cell disorders. I was initially surprised by this discussion, because every session that Jody and I went to that had anything to do with mast cells was full, and some of them were in very large rooms (not classrooms—more like mini auditoriums.). However, three was a session on Friday March 14 for eosinophilic disorders that had 600 attendees, and all of the members of the Task Force, especially Dr. Castells, expressed a desire to draw that many physicians to a mast cell workshop. Dr. Butterfield stated that he sees several patients with eosinophilic disorders to every one patient with a mast cell disorder, so he thought that might account for the increased interest that physicians are showing in eosinophilic disorders—there are simply more patients with those disorders. I asked if there are more patients with those disorders, or were mast cell disorders just seriously under diagnosed ?

The remainder of the session was spent discussing possible workshops for next year, and new screening markers for mast cell activation and anaphylaxis, including carboxypeptidase. While everyone is eager to find the ideal marker to identify mast cell activation, all agree that none is available quite yet.

The Task Force Meeting was a wonderful experience. I appreciate the dedication and efforts of these physician researchers who are working so hard on behalf of patients like us! I am looking forward to next year!

Respectfully submitted,

— Valerie M. Slee, Vice Chair
Board of Directors
Liaison, Medical Advisory Board
The Mastocytosis Society
Email: vslee@tmsforacure.org