ISNA - Intersex Organization of North America
No longer active. Active 1993-2008
The Intersex Society of North America (ISNA) was devoted to systemic change to end shame, secrecy, and unwanted genital surgeries for people born with an anatomy that someone decided is not standard for male or female.
Founded by Cheryl Chase. 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.
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 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.
Some of the changes advocated in the Consensus Statement (CS) included:
- 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 focused 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,” hoping 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.
ISNA felt need for an organization to assume the role of a convenor of stakeholders across the health care system and DSD communities, a role that ISNA itself could not fulfill due to being perceived as biased.
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. The resulting organization was Accord Alliance, and ISNA’s funds and assets (including copyrights for the Handbook for Parents and Clinical Guidelines) were transferred to Accord Alliance.
- (25 July 2017).
I Want to Be Like Nature Made Me, www.hrw.org, InterAct. Retrieved 21 June 2020.
- Lee PA, Houk CP, Ahmed F, et al. Consensus Statement on Management of Intersex Disorders. Pediatrics. August 2006; 118(2): e488-e500. PMID. DOI. Retrieved 20 June 2020.