ISNA's Farewell Message

[Peter]

I am forwarding this announcement from the ISNA website. I disagree with much of what it says, but I
am passing it along as important public information.

"Dear ISNA Friends and Supporters

The Intersex Society of North America (ISNA) was founded in 1993 in an
effort to advocate for patients and families who felt they had been
harmed by their experiences with the health care system. From these
scrappy, brave, and confrontational beginnings, ISNA evolved into an
important resource for clinicians, parents, and affected individuals
who require basic information about disorders of sex development
(DSDs) and for how to improve the health care and overall well-being
of people with DSDs.


Largely as a result of ISNA's efforts, there is now widespread
acknowledgment among health professionals that the time has come to
change how we think about and care for persons with DSDs. Here are two
recent and striking examples of this shift:


* The National Institutes of Health's 2006 Strategic Plan for
Urology sounded an alarm by describing the clinical management and
treatment of DSDs as being "in crisis" due to multiple challenges to
the traditional standard of care, and noting "there are insufficient
data to guide the clinician and family" in making decisions about
medical management.
* In August 2006 a new standard of care was published in
Pediatrics! The Consensus Statement on Management of Intersex
Disorders is an important inroad to resolving this crisis, and it
incorporates many of the concepts and changes long advocated by ISNA.


Although it is far from perfect, some of the ground-breaking changes
advocated in the Consensus Statement (CS) include:


* Progress in patient-centered care: The CS states that
psychosocial support is integral to care, that ongoing open
communication with patients and families is essential and that it
helps with well-being; that genital exams and medical photography
should be limited; and that care should be more focussed on addressing
stigma not solely gender assignment and genital appearance.
* More cautious approach to surgery: The CS recommends no
vaginoplasty in children; clitoroplasty only in more "severe" cases";
and no vaginal dilation before puberty. It also states that the
functional outcome of genital surgeries should be emphasized, not just
cosmetic appearance. Perhaps most importantly it acknowledges there is
no evidence that early surgery relieves parental distress.
* Getting rid of misleading language: By getting rid of a
nomenclature based on "hermaphroditism," our hope is that this shift
will help clinicians move away from the almost exclusive focus on
gender and genitals to the real medical problems people with DSD face.
Improving care can now be framed as healthcare quality improvement,
something medical professionals understand and find compelling.


But as wonderful and historic as these changes are, no institution has
fully implemented them. There are no mechanisms are in place to foster
implementation nor to evaluate to what extent these changes improve
health care experiences and outcomes for persons and families affected
by DSDs.


This is ISNA's dilemma: we finally have consensus on improvements to
care for which we have advocated for so long, but we lack a consistent
way to implement, monitor, and evaluate them. At present, the new
standard of care exists as little more than ideals on paper, thus
falling short of its aim to improve the lives of people with DSDs and
their families.


In the current environment, there is a strong need for an organization
to assume the role of a convenor of stakeholders across the health
care system and DSD communities. It's the primary gap between today's
status quo and the wide-spread implementation of the new standard of
care we envision.


Unfortunately, ISNA is considerably hamstrung in being able to fulfill
this role. Although it has been very successful in recent years in
creating collaborative relationships (our participation in the
Intersex Consensus Group and authorship of the influential DSD
Guideline handbooks being our most salient examples), there is concern
among many healthcare professionals, parents, and mainstream
healthcare system funders that ISNA's views are biased or that an
association with ISNA will be frowned upon by colleagues and peers.
And there is widespread misinformation about ISNA's positions.


For ISNA and many of our collaborators, this has been extraordinarily
frustrating and has hindered our ability to champion and move forward
in this important work.


We believe the most fruitful way to move beyond the current dynamic is
to support a new organization with a mission to promote integrated,
comprehensive approaches to care that enhance the overall health and
well-being of persons with DSDs and their families.


In 2007, ISNA sponsored and convened a national group of health care
and advocacy professionals to establish a nonprofit organization
charged with making sure the new ideas about appropriate care are
known and implemented across the country.


This organization, Accord Alliance, opened its doors in March, 2008,
and will continue to lead national efforts to improve DSD-related
health care and outcomes. Accord Alliance believes that improving the
way health care is made available and delivered is essential to ensure
that people receive the services and support they need to lead
healthy, happy lives.


With Accord Alliance in place, ISNA can close its doors with the
comfort and knowledge that its work will continue to have an impact.
Archives of our historical documents and accomplishments will be
preserved at the Kinsey Institute at Indiana University (all steps for
maintaining confidentiality and privacy will be ensured through
Kinsey). ISNA's funds and assets (including copyrights for the
Handbook for Parents and Clinical Guidelines) will be transferred to
Accord Alliance.


So although we are sad to see ISNA close—it's been a phenomenal
experience for so many—we are excited knowing that we, and you, fought
so hard for is becoming a reality.


ISNA's successes and the future of Accord Alliance would not have been
possible without the involvement of many, many dedicated people. (Here
are just some of the people who raised money, worked in our offices,
wrote, publicized, spoke, provided support, and so much more). We
cannot thank each of you enough for the encouragement, support, and
hard work. We could not have done it without them!


If you are an ISNA donor, you will be hearing from us very soon."

[Glenn]

That's really weird. Just a week or so before that, I sent ISNA a message to ask if they were still alive. I got back a brief reply that asked the same of Betsy and Peter here. :)

baffled in philly

[Emi]

That's really weird. Just a week or so before that, I sent ISNA a message to ask if they were still alive. I got back a brief reply that asked the same of Betsy and Peter here. :)

That sounds like ISNA... They never tell us what they are up to until it's all done.

[Kailana]

I honestly think that the intersexed community is losing a very important resource, and active presence with ISNA closing shop. I understand the reasons, but I think many Doctors are going to use it, ISNA folding as proof that what Intersexed people are saying, how crappy the medical outcomes are, are even less important now. Many will see the I.S. complaints as being even less common of a problem. Or they will see the new DSD standards as being sufficient enough of a solution and continue to ignore what we have been complaining about, argueing for, and keep doing what they have always done. Treat people who are born a lil different as social nono's and continue to abuse innocent people, who have a right to decide for themselves what should be done, if anything needs to be done.

[fraulein_Maria]

[QUOTE=Kailana;15017]I honestly think that the intersexed community is losing a very important resource, and active presence with ISNA closing shop.

>>> i'd agree if it was the isna of old... sadly it is not and "AA" is simply isna with the same DSD face and game.... isna's closing merely damage control for its dis-creditation by alert, independent IS activists.

congratulations! to many here...

to many at the yahoo IS list...

to OII

and every unnamed individual who shouted LOUDLY at ISNA's DSD bullshit.

you have every right to be proud. i am thankful. but our work is far from done. <<<

[Kailana]

We have alot more to do, and need to do it LOUDER. BETTER too, or something like that.

I do want to say that I think the newer parents handbook, is a bit better if you know what I mean. There is some good information provided there for parents, but not enough on Gender choices being left to the child, person, adult IS individual. <----they are the final arbitrators for what is right and for what should be done, not doctors.

[fraulein_Maria]

[QUOTE=Kailana;15030]We have alot more to do, and need to do it LOUDER. BETTER too, or something like that.

I do want to say that I think the newer parents handbook, is a bit better if you know what I mean.

>>> yes it is better than what was before.... but what was before was so GAWD aweful, it did not have to reach up far to be better. I will not settle for a "separate but equal" compromise which lets doctors off the hook; and allows them to continue to abuse us; and lets parents off the hook for the same. <<<

There is some good information provided there for parents

>>> granted. parents will no longer have ignorance as an excuse. <<<

but not enough on Gender choices being left to the child, person, adult IS individual. <----they are the final arbitrators for what is right and for what should be done, not doctors.

>>> or parents. the first rule of medical,nursing,dental allied health care is....

FIRST, DO NO HARM.

this rule is not merely broken in our treatment, it is flagrantly disregarded in the name of "our own good".
doctors who would never cooperate in the cosmetic surgery of childrens NOSES, have no conscience about operating on a part of us that no one sees unless we show them. <<<