03/10/2025
If you have been affected by TSW, now’s the chance to speak up and be counted..
Last month, the CDC reviewed our TSW diagnostic code proposal for implementation within the US health system. A TSW specific diagnostic code would enable clear reporting, tracking of prevalence, promoting needed research and providing better insurance coverage and support for patients.
Due to the ongoing controversy around the condition within the medical establishment, this was the 3rd review we've had in the past 1 1/2 yrs with the CDC’s review board. In fact, after its presentation this past time, representatives from the American Academy of Pediatrics openly opposed its addition before the board.
It's critical that our community shows up to let the CDC know how critical this approval is in helping end TSW and support suffering individuals. Once this code is approved in the US, it will be lot easier to get added to the WHO's ICD-11 code list, which will benefit our global community.
Will you help get this across the finish line by sending a letter of support? We have made the process very easy. All you need to do is insert your personal story within the draft template we have created, which can be accessed here:
https://docs.google.com/document/d/15Jewih1-Qeec3v9nawqZfOQUt1WzPXoy/edit?usp=drive_link&ouid=111255227102524254126&rtpof=true&sd=true
Once you’ve edited the letter, you will need to email it to the address included within the body of the template. Letters will be accepted until Nov. 10th.
If you are interested in viewing the TSW code proposal, you can find it on page 158 of the ICD-10 Coordination and Maintenance Committee September, 2025, Meeting here:
https://www.cdc.gov/nchs/data/icd/September-2025-Topic-Packet.pdf