October 2005
CARES Foundation, Inc. is the only US organization devoted entirely to
congenital adrenal hyperplasia and is in constant contact with affected
individuals and families. CAH is the most frequent disorder causing genital
ambiguity and is substantially more common than other disorders of sexual
differentiation.
As you are aware, the CAH community—those affected,
caregivers and professionals—relies tremendously on the
recommendations of LWPES
[Lawson Wilkins Pediatric Endocrine
Society] and ESPE [European
Society for Pediatric Endocrinology].
The CAH Consensus Statement
published in 2002 has become a
vital tool in the care of CAH
patients. Today, I am writing to
express concern about certain
critical aspects of the upcoming
LWPES/ESPE Intersex
Consensus Meeting. I am
concerned that these issues I
raise have the real potential of
damaging the integrity of the
consensus process and the good
names of LWPES and ESPE. In
the interest of time, the focus of
this letter will be limited to:
unbalanced representation by
consumer advocates; the need to
base recommendations on
scientific data; the terminology
used to identify those with
disorders of sexual differentiation
as “intersex”; and creation of
guidelines for designating centers
of excellence for the care of
those with these disorders.
In January 2005 I contacted
Dr. Peter Lee to ask that CARES
Foundation be included as a
consumer advocate at the
upcoming Intersex Consensus
Meeting. I was very surprised to
hear in September that no
representative from any of the
major worldwide CAH
organizations (CARES, CLIMB,
CAHSGA, or CAHNZ) was
included in the conference. I
have since learned that other
special interest groups, namely
ISNA, will participate in the
meeting as the consumer
representative. It is my opinion
that the unbalanced
representation of activists with
their own socio-political agendas,
poses a threat to the integrity of
this meeting and the Consensus
Statement that will result.
As we all know, medicine isfar from an exact science,
especially when it concerns
disorders of sexual differentiation.
CARES Letter to Consensus Meeting Receives International Support
Recommendations about such
complicated issues as genital
surgery are far too serious to be
left to lay opinion. Instead,
physicians must adhere to credible, scientific data. To my
knowledge, the consumer
advocates included in this
meeting have no such data to
present but will offer only opinion
and anecdotal evidence.
The topics to be discussed at
the Intersex Consensus Meeting
are surrounded in controversy
and emotion. Because of this, I
cannot stress enough how
imperative it is the leaders of the
conference focus on research-based
evidence and not the
personal agendas of those
present. That said, its leaders
should also recognize the lack of
data and follow-up studies
pertaining to outcome and to the
cultural, familial and community
differences of those born with
these disorders. In addition to
encouraging the study of these
issues, leadership of LWPES/ESPE must encourage sensitivityand mental health training in the
medical community, recognition
of the evolution of treatment
protocols and ethical issues, and
increasing education of affected individuals, families and the community at
large.
The inability to make specific recommendations for disorders included under the
umbrella “intersex” indicates a problem with generalization. Disorders of sexual
differentiation vary widely, each having its own physical, emotional and social
ramifications. What is true for one affected community may not be true for
another. In that regard, we cannot allow representatives from other consumer
groups speak for the CAH community. Because a CAH advocate has not been granted
participation in this meeting, I must respectfully ask that the issues discussed
by consumer representatives exclude congenital adrenal hyperplasia. As a
consensus statement has already been published on CAH, I expect it will not be
the focus of this conference and such exclusion will not be a problem.
In addition to rejecting representation by intersex advocates, the memberships
of CARES Foundation, CAH New Zealand, CAH Support Group Australia and CLIMB
reject the term “intersex” as their classification. Affected individuals find
the characterization offensive and misleading, implying gender confusion—not
just genital ambiguity. Clearly, the term has social connotations that can
adversely affect females with CAH. As it has before, it is time for the
nomenclature to evolve.
We urge those attending the meeting to recommend the designation of Centers of
Excellence for the care of those with disorders of sexual differentiation that
will have the appropriate tools, training and experience to care for those with
these disorders and support them and their families. This esteemed group of
experts should be able to determine what guidelines are necessary to deem a
medical center as a Center of Excellence. These centers may be disorder-specific
as few medical centers have vast experience in all of the disorders of sexual
differentiation. This should vastly improve the care of these individuals by
consolidating their care in the hands of those with substantial experience,
allow for the development of further understanding, improve support of families,
and enhance opportunities for research.
Thank you for taking the time to review my comments, and I hope you will find
them helpful. Please feel free to make the
comments available to those at the meeting along with my contact information.
