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December
13, 2002
Dear
ASHI members:
I would like to briefly discuss with you an important issue that is
causing a lot of concern among some ASHI members. As you all know the
National Marrow Donor Program (NMDP) launched a new initiative called
"Customized HLA Typing Service". This service is designed to
primarily help clinical programs that do not have access to high
resolution typing or in cases that a fast turn around time is needed for
an individual transplant. Marketing brochures describing the advantages
of the proposed service have been distributed to clinical programs and
caused a lot of concern among HLA laboratories that support stem cell
transplantation.
This program began in August of 2002 and to date 22 US and 28
International clinical programs have utilized this service. It is
interesting to note that the predominant usage is high resolution DRB1
typing. HLA laboratory directors have voiced their opinion that this
program constitutes unfair competition with the HLA laboratories at
various institutions since most of the laboratories do not have access
to repository donor samples.
To clarify these issues and initiate better communication with NMDP, Dr.
Steven Geier invited Pat Coppo, Chief Operating Officer of NMDP to
ASHI's annual meeting in Nashville to discuss these issues at the
Director's Affairs Forum. We all had the opportunity to hear Ms. Coppo's
presentation and many asked her important questions. In her remarks, she
recognized that the advertisement could be seen as aggressive, however,
the original intent was to provide information to those centers that do
not have access or do not work with an affiliated HLA laboratory. She
added that most of the clinical programs are affiliated with HLA
laboratories that can provide excellent service and those should not be
affected by this new service. Nevertheless, some directors feel that
their inability to access the NMDP's repository samples would limit them
to providing confirmatory typing services on fresh donor samples.
To properly address these issues, the ASHI representatives to NMDP, Drs.
Bob Bray and Sandy Rosen-Bronson, along with ASHI's new Executive
Director, Steve Echard, and I had a conference call on December 6, with
Pat Coppo and her associate Michelle Setterholm. We had a productive
discussion and I would like to take this opportunity to summarize for
you some of the key points:
1. Access to repository samples - There is clearly an advantage of fast
turn-around when using the NMDP's repository samples. Local laboratories
would also like access to those samples. Ms. Coppo indicated to us that
currently NMDP is in the process of changing their original computer
program that is very rigid and does not have the flexibility to make
changes in pre-programmed information. For example, currently the
information from a clinical program requesting custom typing
automatically generates a request and if a sample is in the repository,
it is again automatically retrieved and sent to only the NMDP contract
laboratories. The system does not even allow the NMDP to modify the
order if they prefer a new blood draw from a donor who has a stored
sample.
Ms. Coppo did indicated to us that the a new system is being developed
that will be more flexible and the NMDP will explore the feasibility of
sharing repository samples with HLA laboratories once the new computer
system is functional. She estimated that this could take up to one year
before they can implement this new system. It is important to remember
that there is some disadvantage in using the stored sample, since there
is no way to test for infections and confirmatory typing on a fresh
sample is still required if a donor is selected.
2. Communication with HLA Laboratories - Another area that needs
improvement is communication between NMDP and the histocompatibility
laboratories. One proposal is to provide NMDP with the name of a
designated representative from the HLA laboratory affiliated with each
transplant program in the NMDP network. The NMDP would then include this
individual on their mailing lists. We believe that access to critical
information disseminated by NMDP to members of the clinical programs may
keep the laboratories informed and promote better interaction.
3. Marketing ASHI Laboratories - We also propose to better advertise
ASHI's expertise and inform the clinical programs about the laboratories
that can perform the required testing in various geographical regions.
This could be achieved by creating a list of accredited laboratories on
our website that could be accessed through a link from the NMDP website.
In addition, I strongly encourage directors to interact with
coordinators and physicians to better inform them about the types of
services they can offer. Directors should also try to reach the clinical
programs directly to promote ASHI accredited labs outside of the
contract laboratories.
4. NMDP Information - The NMDP is exploring the potential for posting on
the NMDP website, with a link to the ASHI website, information useful to
histocompatibility laboratories such as the NMDP histocompatibility
committee meeting minutes, the NMDP's typing resolution requirements,
notification of RFP, and other research opportunities.
5. Joint Education Programs - ASHI and the NMDP are in the process of
organizing several joint educational programs. The goal of the
educational programs is to inform the laboratory directors on search
strategies and how the HLA information is used in the search process.
The HLA laboratory directors and staff can become a very important
resource for the clinical programs by providing them expertise for their
search for the potential donor. Several workshops related to developing
search strategies, functions of the NMDP network, and the donor search
proceeds have been planned for the regional and the annual meetings.
I strongly believe that we need to better promote and market our unique
expertise and continue to work with NMDP to improve the exchange of
information. The ultimate goal is to provide the best patient care and
that is our core mission. During the first six weeks of my
presidency I have been very busy dealing with several important ASHI
related programs. I've had weekly conference calls with the Executive
Committee regarding the newly launched proficiency testing program. I
would like to thank Dr. Tom Williams, the ASHI Board and the many ASHI
members who have helped to promote this important endeavor.
I also had the opportunity to attend my first UNOS board meeting in
November and it was not without excitement. Dr. Susan Saidman the chair
of the UNOS histocompatibility committee has eloquently summarized the
events that lead to the accepted proposal by the board of 2 points and 1
point to be assigned for 0 and 1 DR mismatches, respectively. Although
this was not the original proposal we had to accept it with the added
strong language and promise that this is a temporarily assignment and
based on scientific data analysis appropriate changes will be
proposed. Chairs and members of Kidney/Pancreas Transplantation,
Minority Affairs and Histocompatibility Committees will meet in January
and discuss how to gather the crucial information and proceed with the
various modeling systems that need to take in
consideration all the important factors affecting allograft allocation.
I hope that with the arrival of ASHI's new dynamic executive director
Steven Echard, CAE we can move forward with new initiatives to raise
funds and support our important educational activities. I thank you all
for your assistance and support and I wish you a happy holiday season.
Sincerely,
Adriana Zeevi, PhD, DABHI
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