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.
This website will remain up as a historical artifact.
So although we are sad to see ISNA close—it’s been a phenomenal experience for so many—we are excited knowing that what 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 you!
If you are an ISNA donor, you will be hearing from us very soon.