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Caroline Hawkridge's book, The Menopause, HRT and You, (Penguin, ISBN 0-14-027261-5, price GBP 7.99) is billed as "an up-to-date and practical guide for women of all ages".
The publishers wanted the word 'menopause' in the title in order to attract the traditional market of older women, but Caroline was determined to give women in our situation a high profile in the book. Three of the twelve chapters are for younger women needing HRT. In particular, Chapter 6 explains how conditions such as AIS, Swyer's, Turner syndrome, etc. come about and why these women are prescribed HRT. It contains a useful chart showing how the various conditions arise. It ends with six personal stories from women who have faced these problems. Information about support groups is given at the back. Caroline, a UK-based health education specialist and writer, worked with support groups, including AISSG, to develop this chapter. The book is just as useful in explaining intersex conditions as it is in explaining HRT!
The first run of 6000 copies has now almost sold out and Penguin are not going to reprint it as their health lines are being discontinued. The UK support group still has some copies available.
See Literature for details of how to obtain this and other publications from the support group.
An educational film, in which four UK group members relate their experience of having an intersex condition, was premiered on 26 Sept 2002 at a Wellcome Trust symposium in Liverpool.
The film is available in DVD and video formats. See Raising Awareness for more information, including ordering details.
Cardiff-based researcher Iain Morland, who was a speaker at one of our Oxford group meetings a few years ago, has notified us of a conference as follows:
I'm co-organising, with Sarah Creighton and Lih-Mei Liao, a major multidisciplinary conference in London on 4 July 2008. The title of the conference is "Genital Cutting in a Globalized Age: A Forum for Interdisciplinary Debate", and it will address surgery for intersex, male circumcision, female genital mutilation, sex reassignment surgery for transsexual people, and genital cosmetic surgery. The keynote lecture will be by Cheryl Chase of the Intersex Society of North America.
Cheryl's talk will be titled Why a focus on surgery can't improve healthcare services for Disorders of Sex Development.
The flyer and the registration form are available at http://www.iainmorland.net/docs/GCGA-flyer.pdf and http://www.iainmorland.net/docs/GCGA-registration.pdf.
A new terminology scheme has been proposed, to take the place of some of the archaic and stigmatising nomenclature that is in current use.
These are some of the currently used umbrella or bracket terms:
The archaic hermaphrodite-based terms have been much criticised by patients as being stigmatising and out of date, and the possibility of a new scheme has been looked on favourably by many clinicians for some years. But clinicians have always stipulated that any new scheme must, like the old one, provide umbrella terms that can be used (e.g. in medical articles) to cover the wide range of specific intersex diagnoses.
The old terms listed above would become, respectively:
In 2000 The Intersex Society of North America (specifically, Christine Feick and Sallie Foley) started drafting some material that was eventually to become two booklets: a) Clinical Guidelines for the Management of Disorders of Sex Development in Childhood and b) a Handbook for Parents. After the project had been put on the back-burner for a few years, a US clinician Dr Peter Lee invited ISNA board members Cheryl Chase and Alice Dreger, in 2004, to submit an article about nomenclature change to the Journal of Pediatric Endocrinology and Metabolism. This article focuses on replacing the archaic hermaphrodite-based terms, and doesn't mention advocate replacing the term 'intersex'.
The booklet project was then resurrected, and a largely US-constituted Consortium on the Management of Disorders of Sex Development was formed in order to move things forward. See http://dsdguidelines.org/ (from where PDF copies of the booklets can be downloaded free of charge). We are not sure exactly when the term DSD was decided upon in the evolution of the booklets, which claim to have incorporated the contributions of experts and stakeholders, including medical professionals, social workers, activists, parents and adults with DSDs.
The new DSD-based terminology scheme was given an airing, and endorsed/ratified, at an international Intersex Consensus meeting in Chicago on 27-31 October 2005 (organised jointly by US-based Dr Peter Lee and UK-based Prof Ieuan Hughes) in which a representative of ISNA and a member of the German 'XY-Frauen' group (who is also an AISSG UK member) took part. Cheryl Chase of ISNA explained:
ISNA board member Eric Vilain (a peds endo and an internationally regarded basic scientist working on the genetics of sex and gender determination and differentiation) led the discussions [in Chicago] on nomenclature change, and skillfully built consensus for "DSD", including fleshing out how the older terms based on "pseudo hermaphrodite" would map onto the DSD system.
Through the spring of 2006, focus-group reviews of the DSD booklets were conducted at selected medical centres, primarily in California. A Consensus Statement, published after the Chicago meeting (in May 2006), provides charts showing what specific diagnoses the new umbrella terms cover. The Statement is available via our Raising Awareness page.
Although the new DSD-based terminology is explained in the Chicago Consensus Statement, what is not made clear is that it was not actually drawn up in that forum but had been formulated earlier by the Consortium on the Management of Disorders of Sex Development, and then endorsed by the medical conference.
Although the Chicago conference was international in its clinical participants, the DSD Consortium appears to be an almost exclusively US affair.
AISSG UK (www.aissg.org) was the first peer group to be formed (1988) to give support, information and fellowship to individuals and families with AIS and other XY-female conditions (and XX-female conditions such as MRKH) and at this time has a patient/parent contact list of around 725 people. It is therefore surprising that we were not consulted about the new DSD-based terminology at any stage in its evolution, or officially notified about the Chicago Consensus meeting.
The group member in Germany was invited on an informal one-to-one basis to take part in the Chicago conference by a US-based member of the meeting's clinical panel whom she'd met at previous medical conferences in Europe. AISSG UK as an organisation has therefore had no input, until now, into the new nomenclature. It wasn't until February 2006, some 4-5 months after the Chicago meeting, that we first came across the term DSD (and the associated Consortium and its publications) in some references at the foot of an email from the ISNA.
Early in the previous year (March 2005) we had been alerted to the forthcoming (October 2005) Consensus meeting, not by the organisers but by the support group participant from Germany. When, in August 2005, we asked a US-based member of the meeting's clinical panel for some information on what was to be discussed at the meeting (explaining that we weren't seeking to attend but merely to let our members know what broad topics were to be discussed) we received a short reply saying it was "a work meeting with invited participants" and that there was "no program". We didn't manage to get sight of the programme/agenda for the meeting (a list of questions to be considered by each of the meeting's five working groups) until the end of September 2005, via Prof Hughes. Prof Hughes says he was not aware of the DSD term prior to its introduction at the conference, and the topic does not appear on the conference programme/agenda.
Even though we have been 'in the dark' about the new scheme, we can say that it appears to offer certain benefits:
a) it covers a wide range of intersex conditions without using the archaic and stigmatising hermaphrodite and male/female pseudo-hermaphrodite terms.
b) it should get rid of the automatic association of the word 'intersex' with ambiguous genitalia (some doctors saying "CAIS, oh that's not really an intersex condition", and the media stating "AIS is an intersex condition which means the person has ambiguous genitalia") and the extrapolation of this false notion by the media to imply gender identity problems in all cases.
c) it should abolish the assumption, by the uninformed, that all affected people are "between the two sexes".
d) it should reduce the problem of people using nouns to label patients ("a male pseudo-hermaphrodite", as if her whole being/identity is governed by this), although we'll probably still get "She's a genetic male" (using 'male' as a noun, implying she's a man) which is subtly different from "She's genetically male" (implying that a tiny hidden aspect, a sex chromosome, is male).
e) it allows inclusion of non-intersex XX-female conditions like MRKH which share some common features (e.g. absence of uterus/vagina) with XY-female intersex conditions.
f) it provides a terminology with which clinicians and funding bodies will feel comfortable and which has fewer political/activism associations in the eyes of parents.
g) it possibly differentiates intersex from transsexuality more clearly (but no doubt the trans community will try to annexe the DSD term).
However the terminology carries significant disadvantages:
a) the choice of the term 'disorder' is bad news. You could say in its defence that DSD is merely an umbrella term, and that the name of an individual condition would be used wherever possible, but its position at the top of the naming hierarchy makes the term DSD hard to ignore.
b) some adults have come to value the more socio-political, whole-person terms like intersex, and may ask why those who have been advocating a non-medicalising "proud to be intersex" philosophy over the last 10-15 years now seem to be advocating terms based on pathology.
c) its reduction to a 3-letter acronym is possibly unfortunate (allows use of 'DSD' as a cover-up term by doctors, to avoid having to say the word 'disorder'? or 'sex'?).
d) the terminology addresses a lot of the requirements of health professionals but doesn't seem a very good fit in the world inhabited by patients (e.g. will helpful results be thrown up when people seeking support enter the terms into Internet search engines?).
e) there was lack of consultation on the new scheme amongst international peer support groups so this part of the Chicago program was not, in fact, a consensus at all.
f) The way the new terminology was drawn up, and promoted via the Chicago conference, was very poorly handled in public relations terms. There was no concession to the possibility that anyone outside of N. America might have an interest in the matter. The DSD Consortium's handbooks show (typographical) evidence of the contact details for Canadian support groups having been directly copied and pasted from the AISSG UK web site, and yet the handbooks do not list any European support groups.
The overall structure of the scheme (i.e. an 'ABC' term that can divide into '46,XY ABC, 46,XX ABC etc.) seems a significant advance on what has hitherto been available, although certain terms used within 'ABC' (specifically, 'disorder' and 'sex') seem retrograde in nature. The term Variations of Sex Development could not have been used because VSD is already in use for Ventriculo-Septal Defect, but was Variations of Reproductive Development (VRD) considered? It somehow seems less presumptuous and more precise to suggest that someone's reproductive tract (not necessarily their fertility/potency or their capacity to bear children, but their anatomical reproductive tract) is a variant. The term VRD could still, for example, include Congenital Adrenal Hyperplasia (CAH), in which there is fertility, a uterus etc., by virtue of the non-standard anatomy of the lower reproductive tract (vagina, clitoris).
Many people might take issue with the notion that their "sex development" -- and by implication their sex, their gender, how they identify etc. -- are disordered in some way (with the term 'sex' meaning different things to different people), whereas they might accept that they have a variation in some aspect/s of their reproductive tract?
On 8 Aug 2006 one of our UK members had her story published in the Independent newspaper, an account in which she uses the term intersex. When asked if she knew that the term was likely to change to DSD (in clinical circles at least), she replied, "Disorders of... is horrible. Just adds to the sense that we are wrong. I like intersex."
Another UK group member commented:
"I agree [about VRD], I think as a term it is far less stigmatizing and is clinically more descriptive. One of the problems I have had with DSD is that it seems rather vague and implies a lot of things that really are not relevant, ranging from sexual orientation to gory details. VRD sounds a lot better because the term gets well away from all that sexuality/gender stuff and just says things as they are".
Another important issue discussed in Chicago is improved patient care. We have worked since the mid-1990s with selected UK clinicians to promote a patient-centred, multi-disciplinary approach to intersex patient care of the sort recommended in the Consensus statement. The first meeting to which we were invited, to discuss this with clinicians within the University College London Hospital NHS Trust, was on 6 Aug 1997; and the multi-disciplinary clinic there has been successfully running for a number of years now, with a high proportion of our members attending. So the recommended paradigm has been up and running for some years in the UK.
In June 2007 we became aware of a draft "BEEM book chapter or paper" on the outcome of the 2005 Chicago conference, and which included words to the effect that the Chicago meeting was the first time that medics and support groups had met as equals in multi-disciplinary meeting. We emailed Prof. Hughes to point out that this was not correct because there was a Royal Society of Medicine conference on intersex in 1995 in which AISSG UK was invited to participate by Dr Richard Stanhope, and then there was the 'Intersex in the New Millennium' symposium in London in 2002 which was jointly planned and presented by UCLH clinicians and AISSG UK, with many group members attending. There have also been conferences in Pisa, Lubeck etc., at which the group member in Germany had given presentations in collaboration with Dr Bertelloni (Italy), Dr Hiort (Germany) et al. See Raising Awareness for details of all these collaborations.
During the mid-1990s to early 2000s, when ISNA members were busy staging protests, and managing to alienate clinicians, our UK group and the group member in Germany were quietly building co-operative relationships with clinicians. But it seems that when ISNA eventually manage to achieve something of a collaborative nature it is heralded as the first of its kind. We requested of Prof. Hughes that acknowledgement be given in the document to all the progress that has been achieved on this side of the Atlantic.
And it hasn't taken the media long to distort the usage of the term, just as they have done with 'intersex'. A newspaper article in July 2008, for example, tells us that: "The discovery of an extra DAX1 gene may lead to earlier diagnosis and better management of a condition known as disorder of sexual development (DSD), which affects one in 4500 babies whose sex is difficult to identify due to ambiguous or incomplete genital development" and that "Although DSD is a physical condition, which is separate from transgender or transsexualism, children with ambiguous sex organs may grow to identify with a physical sex different from the one they were assigned at birth." So they are telling us a) that DSD is a single condition and b) that it is always associated with a difficulty in assigning a sex.
A series of letters was published in the Archives of Diseases in Childhood in response to the publication of the Consensus Statement, many of them quite critical of the new terminology and the way it was introduced.
AIS Support Group UK
See also coverage of the topic on the Debates/Discussion page.
Berlin-based Erwin J. Haeberle has launched an e-learning course on intersex. Members of support/advocacy groups were invited to review the material prior to it being put online. It will soon be translated into Spanish, Chinese and Hungarian (and possibly other languages). See 'Other Intersex Sites' on our Links to Other Sites page.
This meeting, on 28th January 2002 in London, is a unique attempt to improve dialogue between clinicians working with intersex conditions and their patients. It has been jointly organised by a small group of clinicians and the UK AIS Support Group (AISSG). There will be approximately 150 delegates of whom we hope over half will be people with intersex conditions.
There are many difficult areas in the management of intersex. Communication between patients and the clinicians looking after them has been poor. This meeting will be a valuable opportunity for all delegates both to talk and listen. We expect some rigorous debate but also hope to reach some conclusions on how to improve the situation!
Details from Sarah Creighton, Consultant Gynaecologist, The Portland Hospital, 205-209 Great Portland St., London W1N 6AH. The proceedings may be published in book form.
The programme is as follows:
Introduction and Welcome - Miss Sarah Creighton and AISSG
An Overview of Intersex - Dr. Cathy Minto
The Role of the Support Group - AISSG (see History of the Group for transcript)
Problems with HRT: An Intersex View - AISSG (see History of the Group for transcript)
Sex Steroids and Intersex Conditions - Dr. Gerard Conway
PSYCHOLOGY AND INTERSEX
Chair: Dr. Lih-Mei Liao and AISSG
Disclosure - Dr. Lih Mei Liao
Preparation for Surgery - Dr. Julie Alderson
Talking to Parents and Children - Dr. Polly Carmichael
SURGERY AND INTERSEX
Chair: Mr. Adam Balen and AISSG
Surgery for Ambiguous Genitalia: Current Practice - Mr. Philip Ransley
Vaginoplasty: Current Practice - Dr. Patrick Malone
Long-term Surgical Outcome: A Research Overview - Miss Sarah Creighton
Surgery: A Personal View (two patients talking on video)
The Gold Standard For Intersex: Discussion and Recommendations for Best Management - AISSG and Dr. Richard Stanhope
During 2001, we raised objections to a proposal by NSCAG (National Specialist Commissioning Advisory Group), part of the UK's Department of Health (DOH), to centralise UK intersex treatment at a single London hospital with which we have no ongoing relationship (unlike that which we enjoy with the UCLH/Middlesex and Leeds hospitals where many of our group members are treated) and which, as far as we know, still holds to a policy of non-disclosure to its XY female patients.
The DOH is now reviewing the proposal, and clinicians and representatives from interested support groups have attended three meetings (22 Jan, 22 Mar and 13 June 2002) of a panel to discuss the matter. The outcome of the third meeting was a Model of Care document for intersex patients that outlines what a good service should provide and which will form the basis for commissioning the service. Members of AISSG UK have a chance to review this document and send us any comments, which we then need to feed back to the DOH by 9 Sept 2002.
Below is our original submission objecting to the centralisation:
Dr Sheena Parker
National Specialist Commissioning Advisory Group (NSCAG)
Department of Health
Room LG04, Wellington House,
133-155 Waterloo Road,
London SE1 8UG
8th May 2001
Dear Dr Parker,
Re: Proposed "National Centre for Adolescent and Adult Females with Congenital Abnormalities of the Genital Tract"
We were alarmed to learn in the last few days that Hammersmith Hospital (previously Queen Charlotte's) has been nominated the National Centre since 1996 and that soon this status will be enforced by your organisation, and no other units will be able to undertake this work due to funding and referrals being blocked.
Since 1996 the conferring of National Status has neither been generally broadcast nor enforced. During this time Regional centres offering multi-disciplinary services to patients have grown "organically" as a result of a more enlightened attitude of certain professionals who have moved away from the paternalism and secrecy of the past to pro-active management of cases with the patients.
Many members of the Androgen Insensitivity Syndrome Support Group are intelligent and successful women who have only recently been able to piece together the fragmented picture of their lives, caused by the past secrecy and taboo.
In today's allegedly patient-focused NHS, a strong relationship of trust and co-operation has been built up over the last 5 years between patients and professionals in these Regional centres, culminating in a Symposium planned for January 2002 at which both parties will debate on an equal-status basis the best way forward for the future.
All the hard work, the financial investment and most importantly the bond that has developed over this period are at risk due to what appears to be a bureaucratic requirement.
"Centralising" all services will cause considerable upheaval to patients who will have to start again building a relationship with their consultant, and a logistical challenge for the Centre, which claims to have the capacity for the workload. We doubt this claim and can almost certainly predict the resulting tabloid headlines.
At this politically sensitive time (General Election looming) and the current airing being given to clinical litigation claims, the tabloid press would leap at an opportunity to stir up interest in a good old-fashioned freak show - there is great public confusion surrounding Intersex conditions and Transsexuals.
Therefore, we urge you to consider what is best for the patients and step back from enforcing this outmoded dogma - the world has moved on since 1996, and the genie is out of the bottle never to return.
Attached is a more detailed letter from our Publications Editor which sets out the extent of the co-operation between the AIS Support Group and in particular the teams from the Middlesex/UCL and Leeds hospitals. We trust this will highlight the advisability of not taking a retrograde step.
Mrs S. Woodgate
AIS Support Group
8th May 2001
Re: Proposal to promote Hammersmith (Q. Charlottes & Chelsea Hospital) as the "National Centre for Adolescent and Adult Females with Congenital Abnormalities of the Genital Tract"
We are very concerned to hear of a proposal on the part of National Specialist Commissioning Advisory Group (NSCAG) at the UK Department of Health to promote Queen Charlottes and Chelsea Hospital QCCH (Hammersmith NHS Trust) as the "National Centre for Adolescent and Adult Females with Congenital Abnormalities of the Genital Tract", a move that would presumably compromise the well established role of the UCL/Middlesex and Leeds (General Infirmary and St. Jamess) Hospitals as multi-disciplinary centres of excellence in the treatment of intersex conditions. We set out below the reasons why we think the proposal is a seriously bad idea.
The AIS Support Group (AISSG) is the only UK peer support group for a number of XY female intersex conditions such as androgen insensitivity syndrome (AIS), XY gonadal dysgenesis (Swyer's syndrome), 5-alpha reductase deficiency and leydig cell hypoplasia; and we also have members with XX female (non-intersex) conditions such as Mayer Rokitansky Kuster Hauser (MRKH) syndrome, Mullerian dysgenesis/aplasia and vaginal atresia.
We have enjoyed a strong and mutually beneficial working relationship with clinical teams at UCL/Middlesex and Leeds Hospitals since early 1995. At that time our group was still in the early stages of its development and was working hard to bring Androgen Insensitivity Syndrome (old name Testicular Feminization Syndrome) and similar conditions out into the open and make intersex less of a shameful and taboo subject. We have had no such productive relationship with QCCH.
Requesting Input for our Literature
In 1993, we wrote to a consultant gynaecologist at QCCH (and to a number of clinicians at other hospitals) explaining that we were formalizing our group (which had been started in a small, homespun way in 1988), were preparing a factsheet for parents and patients, and would welcome his input. We were particularly interested in obtaining his contribution because we had heard on the grapevine that he was involved in some sort of support group for patients with problems like AIS and we were concerned that our efforts might duplicate or conflict with his.
We asked him about the nature of his group, expressing a wish not to tread on his turf as it were, but were not able to elicit any response on this in spite of repeated follow-up communications. However we did receive an early reply discouraging us from our attempts to increase awareness of AIS. He said he was happy for us to form a support group for parents but he was clearly very unhappy about XY female patients getting to know their diagnosis. See Psychological Paternalism in ALIAS No. 3, Winter 1995. (ALIAS - Looking At AIS, is the support groups newsletter, see http://www.aissg.org/13_ALIASES.htm).
The QCCH Support Group
We eventually found out from other quarters that the support group run by QCCH was not actually a peer support group for AIS or intersex conditions (they would never use terms like this anyway, in view of their secrecy/paternalism regarding intersex diagnoses) but was a hospital-controlled facility whereby women with vaginal hypoplasia/agenesis would meet once or twice a year, in the hospital, to discuss their progress with vaginal lengthening by pressure dilatation.
Paternalism vs Openness
One of our AIS group members who herself had vaginal hypoplasia tried to join the QCCH support group, purely for her own benefit in dealing with her own situation, but this was obstructed all along the way (her repeated enquiries were ignored). Having persisted, she was summoned for an interview with the cons. gynaecologist (who presumably knew she was an AISSG member) at which she was grilled as to her motives and told that she could only attend the meetings if she promised not to reveal diagnostic information to the others in the meetings (something she had no intention of doing anyway) since most of them had not been told their diagnosis. She left his office in tears.
Since many of QCCHs XY female patients have not, we believe, been told their diagnosis, their support group cannot facilitate true peer support, in the holistic sense of addressing all aspects of the patients condition with an honesty that will allow her to make sense of her situation, assign it a label, gain the comfort of in-depth discussion with others..... probably grieve (a natural and cathartic process).....and thus move on with her life.
The BBC Dark Secrets Documentary
In 1995 we heard that the QCCH consultant had declined an invitation from the BBC to take part in a documentary called XY Women (part of a series called Dark Secrets) and, moreover, had actively tried to discourage the BBC from making the film. The programme was made, with the help of other clinicians (e.g. Prof. Howard Jacobs, then Prof. of Reproductive Endocrinology at the Middlesex Hospital, now retired) and was broadcast on BBC2 on 29th Aug 1996 (see BBC Documentary on AIS in ALIAS No. 6, Winter 1996).
The BBC provided a helpline and passed enquiries on to us. This film has proved to be an important vehicle by which many AIS women have for the first time been able to understand their condition, introduce it to family and friends, and find peer support by locating our support group. It is very frequently mentioned as a life-saver by people making contact with us.
Fear of the Truth
We began to understand that the cons. gynaecologist had inherited from his predecessor, Prof. Dewhurst, the paternalistic philosophy of withholding the truth from XY female patients about their diagnosis. He feared, one assumes, a flood of angry patients complaining about this, if AIS and other intersex conditions were to come out from behind the curtain of secrecy and half-truths with which he (and other clinicians) had shrouded them hitherto.
First Contact with UCL/Middx Clinicians
Members of our group were invited by Dr Richard Stanhope (paed. endocrinologist, Gt. Ormond Street Childrens Hospital) to take part in a conference on The Management of Intersex into Adult Life - especially androgen insensitivity/testicular feminization at the Royal Society of Medicine London on 26th April 1995 (see Report on RSM Symposium in ALIAS No. 2, Summer 1995).
This was possibly the first occasion on which a patient support group had been invited to participate in a medical conference on equal terms with clinicians. We heard afterwards that some of the more old-school members of the audience had not approved of this but we received highly appreciative letters from a few clinicians including Dr Gerard Conway of UCL/Middlesex and Mr Adam Balen of Leeds praising our presentation and saying how good it was that wed been involved (see Doctors Write to Us in ALIAS No. 3, Winter 1995). The QCCH consultant was a speaker at the conference. We received no such message from him. This was the start of our working relationship with the UCL/Middx and Leeds clinical teams.
Gave up Contact with QCCH
We quickly gave up trying to liaise with QCCH and concentrated all our efforts on taking up the interest shown in our endeavours by the clinicians at UCL/Middlesex and Leeds. From the start, UCL/Middx and Leeds have operated a policy of openness and truthful disclosure that is vital in enabling patients to put the final pieces in the jigsaw, start closing the box and get on with their lives and has been very much appreciated by patients.
Dr Gerard Conway introduced us to his colleagues Miss Sarah Creighton (cons. gynaecologist), Miss Melanie Davies (cons. gynaecologist) and Dr Lih-Mei Liao (clin. psychologist); and contact was established with Ms Julie Alderson (clin. psychologist) who works with Mr Adam Balen (cons. gynaecologist) in Leeds. More recently we have also met UCL/Middx clinicians Dr Peter Hindmarsh (paed. endocrinologist) and Dr Caroline Brain (paed. endocrinologist) and we have remained in touch with Dr Richard Stanhope. Since mid-1997 we have been actively involved with these clinicians in the following initiatives:
Multi-Disciplinary Patient Care
The first meeting to discuss the development of multi-disciplinary clinics for XY female patients took place on 6th Aug 1997 between Gerard Conway, Sarah Creighton, Melanie Davies, Lih-Mei Liao, seven representatives from AISSG and two from the support group for Congenital Adrenal Hyperplasia (see Middlesex Hospital Forum in ALIAS No. 10, Winter 1997).
A second meeting took place on 20th Jan 1999 (see Middlesex Hospital Update in ALIAS No. 14, Spring 1999) by which time Dr Cathy Minto had joined the UCL/Middx team as gynaecology research fellow and introduced the idea of doing a research study with the help of the support group.
The multi-disciplinary clinic (endocrinology, gynaecology, psychology) has now been successfully operating at UCL/Middx for a number of years. We feel that a multi-disciplinary approach is long overdue in the treatment of intersex conditions and that this must take place in a centre that has expertise not only in gynaecology, but in endocrinology (paediatric and adult) and in clinical psychology. The psycho-social ramifications of intersex are large and have only recently started to be addressed by clinicians. The clinicians at the UCL/Middx and Leeds centres are at the forefront of this shift in emphasis.
The psychological management of conditions like AIS amounts to rather more than repeatedly telling such patients they are just normal women. Yes, in many senses they are, but this realisation comes about by meeting others similarly affected, with all the cards on the table, and not by such controlling and paternalistic exhortations which, paradoxically, only sow the seeds of doubt in the mind of the patients (Methinks he doth protest too much).
Guest Speakers at our Group Meetings
Following the attendance of Dr Conway and Dr Stanhope at our 5th parent/patient group meeting in March 1997, the various UCL/Middx and Leeds clinicians have been regular guest speakers at our parent/patient group meetings, giving up their Saturdays to be with us.
AIS Patients Charter
In 1997 Dr Stanhope drew up an AIS Patients Charter for us (see copy on website and also Draft AIS Patients Charter in ALIAS No. 10, Winter 1997).
AISSG Recommends UCL/Middx/Leeds
In 1998 we started developing our web site at http://www.aissg.org and from an early stage listed our clinical colleagues on our Recommended Clinicians page. We have had no further contact at all with QCCH since the early/mid 1990s so we do not recommend any clinicians from there.
The idea of the support group helping with research studies was first suggested by Gerard Conway and Lih-Mei Liao following our 7th parent/patient meeting in March 1998 (see Research Plans in ALIAS No. 12, Summer 1998).
We have now helped with the following research projects (see also Research Studies page on our web site):
Julie Alderson was a guest at our Sept 1998 group meeting where she discussed a proposed research study (see Clinical Psychology Study in ALIAS No. 14, Spring 1997). Completed in 2001, this study involved interviews with a number of group members and formed the basis of her doctoral degree titled Women with Androgen Insensitivity Syndrome (AIS): A Qualitative Study. Julie is now writing up the findings for journal articles.
Cathy Minto spoke of an intended research project in early 1999, as mentioned earlier. Her project started life as a study of vaginal hypoplasia but she found that there were so many additional areas of importance that its scope has widened since then. By March 2001 she had had 130 study questionnaires returned (about 50% being from members of support groups for AIS, Congenital Adrenal Hyperplasia and MRKH and 50% from clinic patients), she had examined a number of the women, and was starting to write up research papers and conference presentations based on the findings.
Sue Smith (clin. psychology doctorate candidate, University of East London) linked up with Cathy some months later and developed a parallel study on psychological aspects (see Clinical Research Update in ALIAS No. 15, Summer 1999. This ALIAS article contains updates on the studies of Lih-Mei and Cathy, and announces Sues study). Sues study was completed in early 2001 and used in her doctorate thesis which was titled Experiences of sexuality reported by women with intersex conditions who have undergone some form of genital modification: A tale of two sexes?. Again, this study was based on interviews with AISSG members.
Gerard Conway first suggested a study of medical aspects of AIS, and involving a trial of Testosterone HRT in women with the complete form of AIS, in early 2000 (see 10th UK Meeting in ALIAS No. 16, Spring 2000). By early 2001, he had completed a pilot study and was embarking on the main study.
The following ALIAS articles contain further updates on these various studies:
UK Research Studies and 11th UK meeting in ALIAS
No. 17, Summer 2000
Research Studies Completed in ALIAS No. 18, Spring 2001
Research Studies Progressing in ALIAS No. 18, Spring 2001
12th UK Meeting in ALIAS No. 18, Spring 2001
Polly Carmichael (paediatric clin. psychologist, Gt. Ormond Street) announced a research project to study how parents deal with information about AIS in their children (see Parents Research Study in ALIAS No. 18, Spring 2001) Polly had attended our group meeting in March 1997 with Richard Stanhope and also our March 2000 meeting.
UCL/Middx Clinic Open Days
We have taken part in occasional Middx/UCL clinic 'open days'. These are hospital-based discussion forums to which all the hospitals XY female patients are invited and at which the clinicians explain medical issues and AISSG representatives talk about the support group. Afterwards, the clinicians in various specialties are available for regular private consultations. See Clinic of the Future? in ALIAS No. 17, Summer 2000.
Upcoming AIS Symposium
In early 2000, the idea of holding an AIS Symposium (i.e. a full-scale medical conference) was suggested (see AIS Symposium in ALIAS No. 17, Summer 2000 and UK AIS Symposium in ALIAS No. 18, Spring 2001). By late 2000 plans were being made, jointly by UCL/Middx (Sarah Creighton) and an AISSG representative, for a conference titled Intersex in the New Millennium. A multi-disciplinary forum for all those involved to be held in early 2002. Invited specialists and AISSG will play an equal part and the conference will acknowledge the co-operative mode in which we have been working towards improved patient care.
Fanning Out Expertise
The plan for improved patient services, that the UCL/Middx clinicians discussed with us in mid-1997, was that the Leeds and London teams would become northern and southern UK centres of expertise and that this knowledge and experience could then be fanned out to a few other regional centres. A patient in the north of England will not want to trek down to a single national centre in London on a regular basis for clinic appointments. There are 30 or so specialist regional paediatric endocrinology centres, so it seemed sensible to work towards something similar for adult care (but with fewer centres).
We believe that intersex treatment belongs within the category of Specialised Commissioning (regional centres, usually 8-12, to concentrate expertise) rather than NSCAG (very rare conditions, 1 or 2 centres and a handful of patients). Incidence figures that we have to hand are 1in 2,500 for Turner Syndrome, 1 in 5,000 for all variants of CAH and 1 in 20,000 for AIS. This represents a large workload for one centre.
QCCH is Still Reluctant to Acknowledge AIS?
We have no idea whether the attitude to truth disclosure at QCCH has changed over recent years but we would imagine that they will have had to go with the flow to some extent because there has been a huge move on the part of intersex patient support and advocacy groups, e.g. Intersex Society of North America (ISNA), to increase clinical and public awareness of the needs of intersex patients, and of their right to such knowledge about themselves that will permit autonomy, and enable them to make sense of their situation and locate others who are affected.
We were quite surprised to discover about 6 months ago that QCCH now had a web site (http://www.femgenab.org.uk/). We were even more surprised to see that they actually included a link to our site, which seemed like a reluctant admission on their part that their position regarding secrecy has become untenable. However, their site concentrates on MRKH Syndrome (and CAH) and does not describe AIS or other intersex conditions at all. They also make a dubious statement to the effect that absence of the vagina is known as MRKH Syndrome. Could this be an attempt to pull the wool over the eyes of AIS patients with absent/short vaginas by making them think they have a less threatening XX condition like MRKH, rather than a dreaded XY condition?
Whilst the paternalistic attitude of QCCH towards intersex patients may have changed slightly over the last few years (and were not even sure that it has we have only ever had one enquirer, out of several hundred, who has said that QCCH referred her to us), we have no relationship or goodwill built up with them at all, and still regard them as an island of out-dated practice, marooned by a tide of increasing openness and equal partnership taking place elsewhere.
QCCH is not an Intersex Centre
We get the impression that QCCH has built a good and well-deserved reputation, started in Prof. Dewhursts days, for treating XX women with MRKH Syndrome, Mullerian Dysgenesis etc. for their vaginal hypoplasia, and that whilst they obviously have some XY female (i.e. intersex) women patients, these are painted with the same brush when they in fact have significant additional problems that are not experienced by the former group. The teams at Leeds and at UCL/Middx are very much aware of the additional medical and psychological issues experienced by XY women compared to XX female patients with reproductive development problems, many of the psychological problems ensuing from a denial on the part of some clinicians of the existence of intersex when talking with anyone apart from other doctors; a denial that gets passed on to parents, patients and society in general.
From what we know of the set-up at QCCH it has not earned the right to consider itself a centre for the treatment of intersex patients. We approve of their dedication to promoting the non-surgical pressure dilatation method, but vaginal agenesis/hypoplasia is only one aspect of some intersex conditions. What about specialist endocrinology services? Dr Conways predecessor at UCL/Middx, Prof. Howard Jacobs, was very well respected as an expert in reproductive endocrinology who had a user-friendly patient-centred approach, one that very much still operates in the UCL/Middx team today. A number of CAIS women are finding, for example, that they feel better on testosterone- than oestrogen-based HRT. The UCL/Middx clinicians respect this. Most other hospitals will probably not sanction this treatment, especially those that are stuck in a groove of of denial of the XY/intersex nature of AIS when dealing with patients.
What about Informed Consent?
In conditions like AIS there is a slight risk of cancer in testes left in situ beyond adulthood but many clinicians have in the past used this as a excuse for removing them prematurely, in infancy/childhood. The real reason is probably to avoid awkward explanations to an older patient. An increasing number of AIS patients are angry at having undergone gonadectomy earlier in life (but even as adults in some cases) without having been told their diagnosis and therefore without informed consent. Some are angry at having thus lost their source of endogenous testosterone. Some are considering litigation. They argue that if clinicians did this to a man thered be an outcry and that every normal XX woman has a small risk of breast cancer, and yet breasts are not removed prophylactically. QCCH will find this an increasing problem if its paternalistic and secretive attitude continues.
Paediatric Endocrinology/Urology is Important
QCCH has a heritage as a womens (maternity) hospital. Although it will no doubt have paediatricians on hand to deal with problems in the neonatal period, we wouldnt think it has the same expertise in paediatric endocrinology and paediatric urology that is available at UCL/Middx via its collaboration with experts (e.g. at Gt. Ormond Street Childrens Hospital) within the same NHS Trust. Experts such as Dr Stanhope (whose predecessor Dr David Grant was a world-renowned expert in intersex in children), Mr Christopher Woodhouse (cons. urologist), Mr Philip Ransley (cons. paediatric urologist) etc., all of whom work very closely with our other clinical colleagues.
Transition to Adolescent/Adult Care
An integration of paediatric with adolescent/adult services is very important in intersex conditions. The UCL/Middlesex was the first UK hospital to launch an adolescent medicine service, in early 1998. Sarah Creighton and Cathy Minto are active members of the new British Society of Paediatric and Adolescent Gynaecology (BritSPAG) started in early 1999. Sarah is a member of the Working Party set up in early 2001 by the British Association of Paediatric Urology (BAPU) to evaluate the practice of gender reinforcement surgery in intersexed infants with so-called ambiguous genitalia (see BAPU Working Party in ALIAS No. 18, Spring 2001), an issue that is now hotly debated largely as a result of pressure from surgically corrected intersexed adults via support/advocacy groups.
Carrier Testing Facilities?
Prof. Ieuan Hughes, an internationally known expert in the genetics of AIS. Prof. Hughes research lab used to provide some level of carrier testing on an ad hoc basis but this is no longer feasible (and was always very long-winded and unsatisfactory since it was done as a favour on the back of research activities).
XX female relatives of AIS women thus experience difficulty obtaining hard information on their possible carrier status, and demand for this type of service is likely to grow. In the past, secrecy and denial on the part of clinicians and within families meant that XX relatives were not made aware of the genetic inheritence pattern of conditions like AIS, but this is changing. Dr Conway would like to set up an NHS carrier testing service at the UCL/Middx. He has access to the necessary expertise but not to the required funding. What plans does QCCH have to deal with this issue?
The relationship that has been built up between the UCL/Middx and Leeds clinicians and ourselves (and other support groups such as those for CAH) is an excellent model of patient/doctor co-operation that has already borne much fruit in only a few years. The general attitude of... and the multi-disciplinary service provided by... these teams is universally praised by the many group members who now attend the clinics there, and are the envy of group members overseas. You only have to read the many glowing testimonials included in our newsletter to realise how our group members appreciation of these clinicians, and their appreciation of our efforts, can only indicate the wisdom of building on this foundation and of further funding and expanding the activities at these centres.
We cannot work with a single national centre that concentrates only on gynaecology, does not have expertise in the endocrinological aspects of a range of intersex conditions and is, as far as we know, still in the dark ages regarding the sea change in the psycho-social treatment of intersex conditions that has occurred in the last 5-10 years.
Pubs. Ed./UK Member Sec.
AIS Support Group (AISSG) UK
A Congress of the European Federation
of Sexology (incl. Milton Diamond...) took place recently in Berlin,
Germany. In parallel with this was the first ever public discussion on the
theme of intersex which took place in Humbold University, Berlin, with
more than 200 people attending. The main line of the discussion was that
these variations of biological gender shouldn't be considered as a disease,
or a malfunction, or a crippling, or whatever.... but as variations
of nature! The following are links to some of the speeches given during the
Please read 14 May 2000 - AISSG UK's 'GIRES Statement' first.
On 23 May 2000 Bernard Reed issued the following statement to various interested groups:
Please place the following on your News Services:
GIRES' Recent Work on an Intersex Issue
Please publish this letter via your service if you think that would be appropriate. In any case, a copy is being sent to the people whom GIRES knows have an interest in this matter.
GIRES has thanked the commentators individually for their reponses to the consultation process it initiated on an intersex issue. It is now timely to inform them and people generally throughout the trans and intersexed communities about the main lessons from commencing that consultation process and whether the charity now proposes to undertake further work on this issue.
1 - The process was started far too soon. I should first have established agreement with the representatives of the intersex organisations that they did wish: a - to make use themselves of the special opportunity which I believe exists this year to be heard and heeded by the British medical profession, and b - GIRES to play some role in that communication process.
2 - Producing a draft for comment at the outset of the consultation process and placing it immediately in the public domain was rightly seen as, to say the least, presumptious.
3 - The previous link between Press for Change and GIRES made the charity seem to be exclusively interested in trans issues, an impression that was heightened by my use of PFC News as a medium for communicating with the intersexed community. It has not been well enough publicised that GIRES' objects, set by the PFC activists who founded it, are to advance education into Gender Identity and Intersex Issues. Hence the work GIRES was proposing was mistakenly seen to be in furtherance of a trans agenda, particularly to change the present birth certificate regime.
4 - The organisations supporting intersex people and their parents are rightly protective of their members and were suspicious of my reason for approaching them. My pushing to establish a dialogue with them merely stiffened their resistance. Separately I have apologised to AISSG for being importunate towards them. I must leave it to them to decide what part of my recent correspondence with them to make public.
I have already expressed my regrets to ISNA and CISAE for their having been misled about GIRES' claims and intentions. I hope that my previous responses and this latest message will give them all the reassurance they need.
No further work on this project will be undertaken by GIRES unless it is at the invitation of the intersexed community. If asked, we will of course be glad to assist.
With kind regards and best wishes,
A Position Statement Concerning GIRES (Bernard Reed) by the Androgen Insensitivity Syndrome Support Group UK (AISSG UK):
The Androgen Insensitivity Syndrome Support Group (AISSG) is a peer information/support organisation established in the UK in 1988 (formalised in 1993) and which achieved UK charitable status in early 1999. We are completely autonomous but are affiliated to the Genetic Interest Group (GIG) and Contact a Family.
We have around 120 subscriber members (and many more contacts) in the UK (mostly adults but many families too) affected by intersex conditions such as AIS, XY gonadal dysgenesis (Swyer's syndrome) and 5 alpha reductase deficiency; with some XX female members who have Mayer Rokitansky Kuster Hauser (MRKH syndrome, Mullerian dysgenesis/aplasia, vaginal atresia etc.
We have representatives in USA, Canada, Australia, Germany, S. Africa and Spain. Our website at http://www.aissg.org has received much praise, from people with AIS who come across it after years in the wilderness (having not been told about their condition) and from medical specialists in the intersex field.
After extensive email correspondence with Bernard Reed of GIRES during mid March to early April 2000, we decided not to work with GIRES at the present time. Overall, we wish to disassociate ourselves from GIRES and to state that they do not represent us.
We have already established mutually beneficial relationships with several groups of clinicians and are working with them on AIS-related research projects and the provision of multi-disciplinary patient care. We collaborate on joint projects with other related support organisations (e.g. the UK Turner Syndrome Society, the Anorchidism Support Group) via a consortium set up by the Genetic Interest Group. Within this consortium (set up in 1999) we have recently published a leaflet for clinicians to give to parents on receipt of a 'genetic diagnosis' and have obtained a grant from the Baring Foundation to enable one of the clinical psychologists with whom we work to carry out counselling skills training for the three groups' helpline volunteers. We also work very closely on an informal basis with the UK's Adrenal Hyperplasia Network (AHN) and Congenital Adrenal Hyperplasia (CAH) Group.
We do not foresee that an association with GIRES would follow the same spirit as those above, so do not wish to join forces with Reed. We believe that Reed's desire to change the medical management of intersex, although reasonable in itself, is based firmly on the discourse of gender dysphoria (transsexualism/transgender, often referred to as 'trans') and moreover masks an underlying attempt to exploit physical/biological intersex so as to provide an authenticity to that scenario, an authentication that it doesn't need.
The historical perspective is as follows:
Reed emailed us in July 1999 introducing a UK organisation called the Gender Identity Research and Education Society (GIRES) of which he is chairperson and wanting us to enter into a working relationship with his organisation. We read the hardcopy information that he sent and were put off by several things, but mainly by the fact that:
a) GIRES's heritage seemed to be as a trans, rather than an intersex organisation.
a) Reed seemed to be making a case for trans to be considered as a biological intersex condition. We felt we did not have enough scientific information to know whether this was valid.
While generally agreeing with GIRES's wish to change the medical management of intersex (including childhood 'corrective' surgery), we weren't sure about their claims that transsexualism was "an intersex disorder of the brain" and that the term 'transsexualism' should be abolished and it should be considered as an intersex condition. They also seemed keen on lobbying government to allow birth certificate changes for post-operative transsexuals (not an area of great concern to us, although some of our members would like to have a category of 'I' for 'sex' on official forms/documents in general). It all seemed rather political and we as a group are wary of taking political stances. We did not communicate with Reed further, other than to thank him for his information.
In March 2000, the person who runs our helpline received a phone call from Reed and, having forgotten about our reservations about GIRES, agreed that he could attend an AISSG group meeting a week or so later.
We emailed him to ask why he wanted to attend and it seemed from his response that he wanted a) to see what happens at our meetings, b) to do a presentation, with slides, on GIRES, and c) to discuss possible joint ventures. We explained that our agenda was already fixed (and full), that our support meetings were not the forum for all this anyway, and asked him not to attend (but suggested we might meet on another occasion). At that time he also urged us somewhat insistently to collaborate with him a) to influence what was to be covered in a TV documentary that the BBC wanted to make for the Horizon series, and b) to form a joint policy, along with the UK's Adrenal Hyperplasia Network (AHN), on what we would all present at a British Association of Paediatric Urology meeting in Sept 2000, to which all three organisations had been separately invited by the association (we accepted our 'invitation to speak' in October 1999). He was also excitedly recommending organisations like the Intersex Society of N. America (ISNA) to us, as if wanting to act as a catalyst between us, and possibly not realizing we'd already been in touch for some years.
We started asking questions about GIRES's policies and aims, about the nature of its membership and its credentials as a mouthpiece for intersex people. There followed a number of emails from Reed giving information about GIRES and asking for our comments on some GIRES guidelines for the medical management of intersex and on a draft synopsis of the issues that GIRES thought the BBC programme should cover.
Throughout his emails, and in his guidelines/synopsis, Reed would employ the phrase "gender identity and intersex conditions" as a means, it seemed to us, of slipping gender dysphoria into the picture without explicitly saying so. While many of the points in GIRES's management guidelines made sense at first sight in terms of intersex, we were wary of this "Trojan horse" approach to including trans within these recommendations because whatever aetiological considerations might link these, in terms of medical treatment there is a world of difference between purely gender issues and the issues faced by intersex children. We did not comment on the content of the guidelines/synopsis.
We noted several other things during the exchange:
a) Reed wrote that "We don't ask our members what conditions they have" and "I am confident that the majority of our members have no condition at all and nor does any member of their families. I estimate that only 7% of the charity's income is derived from those with a condition or the parents of such persons." It seemed strange for someone representing an organisation so underweight on the intersex side of things to be throwing so much weight around in that sphere.
b) names of well-known researchers and clinical experts seemed to appear 'overnight' against the various topics on further drafts of his 'BBC synopsis'. At least one of them (a consultant gynaecologist in the team at the UCL/Middlesex Hospital, London, who are our main collaborators on research/clinical aspects of AIS) had no idea she was itemised in this way and was quite annoyed; so we surmised that others possibly hadn't been consulted either.
Meanwhile, Heike Rebholz at the BBC had already contacted us by email wanting to talk about how we might take part in the Horizon programme. Our understanding was that the idea for the programme came out of recent publicity about the "John/Joan" (or "Money vs Diamond") case, so it was to cover the issue of childhood genital surgeries.
An intermediary (an AISSG member with media experience) reported back that Heike was looking at the issue of 'corrective' surgery in Britain. And that she wanted to know whether the group had any members with 'partial' form of AIS (PAIS) who'd had surgery for a large clitoris/micropenis and now wished they hadn't, or someone who felt the surgery took too much away and left them with loss of sensation. And whether there was a spokesperson from the group who could say what the group's feeling was regarding surgery for so-called ambiguous genitalia - whether it should be left until puberty etc.
We reported back to Heike, via our intermediary, that we didn't know how many of the 30 or so Partial AIS (PAIS) women/children on our list had undergone clitoral reduction surgery, but we knew of some adult PAIS women who definitely had not, and who are quite happy with that state of affairs. We had no contacts who had complained to us about this type of surgery. We had one recent overseas parent contact whose newborn was more or less given surgery without the parents having much say in the matter. The mother had subsequently discovered our group, read "negative things" about such surgery in our newsletter (ALIAS), and become very depressed and angry. We explained to Heike that the overwhelming majority of our contacts (several 100) had Complete AIS (CAIS) for whom clitoral size/surgery is a non-issue anyway.
We told Heike that on ethical, social, philosophical grounds we were against any surgery without fully-informed consent (which meant no cosmetic surgery of this nature on infants/children) and that society should overcome its fear of non-standard genitals rather than forcing infants/children to conform to some 'standard' that is patently contrary to that which Nature actually provides, and that we also saw such surgery as yet another tactic (in tandem with secrecy regarding diagnostic information) in trying to cover up the very existence of intersex.
But we had to tell her that we didn't have the direct experience or voice from our members to qualify us to participate; and that we were more concerned with issues of truth disclosure, lack of emotional support, childhood gonadectomy without informed consent, osteoporosis, poor treatments for vaginal hypoplasia, lack of availabilty of carrier testing etc., issues that would presumably dilute the programme away from the topic of 'corrective' genital surgery.
We also sent the above information to Reed and added that we were uncomfortable with GIRES's blurring of biological intersex with gender dysphoria. We were unhappy about the possibility of a programme that set out to consider the specific question of childhood surgery being turned into one which addressed the wider issues of "gender identity" as represented, partly at least, by gender dysphoria (i.e. a group of people who were never likely to have had genital surgery forced on them in infancy/childhood). We felt that in the same way that we didn't have enough direct experience of the question of childhood surgery, we also didn't have knowledge of any scientific evidence that transgender/transsexualism was a physical/biological intersex condition. We felt that the potential inclusion of trans issues in the BBC documentary carried a risk of confusing the general public even more, the question of childhood surgery being complex enough on its own. We told Reed that we were unable to co-operate with him further on these issues.
We expressed our concerns to the BBC about GIRES muscling in on the planning of the programme in a rather assertive manner. Heike replied, saying she was concerned about this too, and informing us that her agenda was still very much open and that she still wanted to talk with us.
However, by that time we were so exhausted by the whole thing that we backed off completely. The day-to-day operations of our group are run by only three people, all of whom have busy full-time occupations and who thus have to devote most of their spare time to support group work. In the end we just got fed up with being constantly pressurized by Reed, and found dealing with GIRES an unnecessary distraction when we had many other tasks to address at same time. We decided we were content with the progress our group was making, we were quite capable of speaking up for ourselves, and were building good relationships with clinicians and with other patient support groups, and thereby significantly influencing research and patient care in a more collaborative and less radical manner.
On 9 May 2000 we received an email from Andrea Brown of "....Press for Change in the United Kingdom which set up the organisation known as the Gender Identity Research and Education Society (GIRES) approximately two years ago..." asking for our opinion of Reed's activities; and this is what has prompted this statement. We'd like to thank those members of PFC who have showed concern over this matter and given us an opportunity to make our position clear.
Androgen Insensitivity Syndrome Support Group (AISSG) UK
A number of other patient support groups issued similar statements around this time.
See above for GIRES's response.
A press release from the Intersex Society of N. America (ISNA):
NORTH AMERICAN TASK FORCE ON INTERSEX FORMED.
SEEKS BROAD INTERDISCIPLINARY CONSENSUS ON TREATMENT
The North American Task Force on Intersex (NATFI) has been formed in response to the growing debate over standards of practice for medical treatment of intersex children. Until a few years ago, these standards were uncontroversial. Now, however, the standards face criticism from patient advocate groups. In addition, the story of David Reimer, published in John Colapinto's book "As Nature Made Him: The Boy Who Was Raised as a Girl," is receiving extensive media attention.
The Task Force was formed by Ian Aaronson MD, a pediatric urologist at the Medical University of South Carolina. Aaronson has, over the past decades, cared for many intersex patients and is the author of chapters on the subject in several medical textbooks.
"We are committed to learn from past mistakes in order to offer the best advice and treatment to our patients in the future," said Aaronson. "Long term outcome data is very sparse and selective, and this puts surgeons on tenuous ethical grounds. I was very gratified at the positive response from members of the professional community and the patient advocate groups to the notion of forming a Task Force."
NATFI brings together specialists in surgery, endocrinology, psychology, ethics, psychiatry, epidemiology, genetics, public health and representatives of intersex patient advocate groups. With the participation of representatives of the Intersex Society of North America and the AIS Support Group, the Task Force is the first decision-making body on intersex medical care to have included intersex patient advocates. "We are committed to achieving consensus on these all-important patient care issues," said Aaronson.
The Task Force, under Aaronson's chairmanship, is expected to address a number of issues, including 1) establishment of standards for informed consent, 2) retrospective review of the long term psychosexual status of patients treated for intersex, 3) establishment of guidelines for the management of children born with ambiguous sex anatomy, 4) initiation of a prospective registry, and 5) revision of medical nomenclature.
The Task Force, an independent and self-governing body, has been endorsed by the American Academy of Pediatrics, the American Urological Association, the American Academy of Child and Adolescent Psychiatry, the American College of Medical Genetics, the Lawson Wilkins Pediatric Endocrine Society, the Society for Pediatric Urology, the Society for Fetal Urology, and the Society of Genitourinary Reconstructive Surgeons.
NATFI EXECUTIVE COMMITTEE
Ian Aaronson MD, Medical University of South Carolina, Department of Urology
Julie Barthold MD, DuPont Hospital for Children, Division of Urology
Sheri A. Berenbaum PhD, Southern Illinois University School of Medicine, Department of Behavioral and Social Sciences
Michael Carr MD, Children's Hospital of Philadelphia, Division of Urology
Cheryl Chase, Intersex Society of North America
Sherri Groveman, Androgen Insensitivity Support Group
Melvin M Grumbach MD, University of California at San Francisco School of Medicine, Department of Pediatrics
Anne Marie Houle MD, Ste Justine Hospital, Division of Urology
Douglas Husmann MD, Mayo Clinic, Department of Urology
Julianne Imperato-McGinley MD, New York Presbyterian Hospital, Division of Endocrinology
Gerald Jordan MD, Norfolk Virginia
Suzanne Kessler PhD, State University of New York at Purchase, Division of Natural Science
Antoine Khoury MD, The Hospital for Sick Children, Division of Urology
Barry Kogan MD, Albany Medical College, Division of Urology
Thomas Kolon MD, Naval Medical Center, Department of Urology
Peter Lee MD, Milton Hershey Medical Center, Department of Pediatrics
Lawrence McCullough PhD, Baylor College of Medicine, Center of Medical Ethics and Health Policy
Patrick H. McKenna MD, Connecticut Children's Medical Center, Department of Pediatric Urology
Ilan Meyer MD, Columbia University, School of Public Health
Heino Meyer-Bahlburg PhD, Columbia University, Division of Child Psychiatry
Claude Migeon MD, Johns Hopkins Hospital, Department of Pediatric Endocrinology
Maria New MD, The New York Hospital, Cornell Med Ctr, Department of Pediatrics
William George Reiner MD, Johns Hopkins Medical Institutions, Division of Child and Adolescent Psychiatry
Alan B. Retik MD, Boston Children's Hospital, Department of Urology
Justine Schober MD, Pediatric Urology
Sharon Schwartz PhD, Columbia University, Department of Epidemiology
Linda Dairiki Shortliffe MD, Stanford University Medical Center, Department of Urology
Eric Vilain MD, UCLA School of Medicine, Department of Human Genetics
Jean D. Wilson MD, University of Texas Southwestern Medical Center, Texas Southwestern Medical School
Selma Witchel MD, Children's Hospital of Pittsburg, Department of Endocrinology
Kenneth J. Zucker PhD, Centre for Addiction and Mental Health, Clarke Division, Child and Adolescent Gender Identity Clinic
NATFI disbanded in 2001 and its website (http://www.natfi.org) seems now to be a basic information source about intersexuality.