If you were to ask any HD patient or caregiver if chorea was their number one concern with Huntington's disease, you would quickly learn that it is not. As of March 2021, an international survey (followed by a petition), found that the vast majority of patients and caregivers sought services and supports for cognitive, psychiatric, and behavioral symptoms of Huntington's disease. Furthermore, they agree that the current diagnostic criteria for HD is outdated and does not meet the needs of the patients and families. In too many cases, patients cannot obtain the necessary diagnosis when it is needed.
Since Project CHANGE began, dozens of medical professionals reviewed these findings and agree that the current diagnostic criteria are archaic and need to be revised to meet the needs of patients and families. Moving forward, all HD organizations were invited to work together for the betterment of the HD community. Below you can watch episodes of WeHaveAFace TV and listen to the support from our amazing HD organizations and medical professionals on this topic.
In the midst of building this international cooperative partnership of HD organizations, an article was published - "Timing and Impact of Psychiatric, Cognitive, and Motor Abnormalities in Huntington Disease”
Without question, this publication sent shockwaves across the HD community, disturbed many world-renown medical professionals, and made patients and families cringe. If you have not read the publication, please take a moment to read it.
The international consortium of HD organizations and medical professionals decided to act on behalf of the global HD community. Two separate letters to the editor were drafted and approved. One letter to the editor was crafted by medical professionals, and the other by HD organizations. Currently, the letter sent by the group of medical professionals was submitted and accepted by the Neurology® Editorial Staff. However, the letter written by HD organizations was not accepted due to their stringent guidelines and protocols.
On October 18, 2021, the first email was sent to the Editor-in-Chief, José G. Merino, MD, (MPhil, FAAN, Washington, DC). We quickly received an email from the Neurology® Editorial Staff explaining the procedures to submit a letter to the editor (above). Additional emails were sent to underscore the importance of our letter; it was written by Huntington's organizations (not medical professionals) on behalf of our international HD community. It was also requested that the letter be sent and read in its entirety considering the nature of the published article which we are responding to. It is impossible to submit less than 200 words in this case. Although we agree that guidelines and protocols must be in place, however, there must be an outlet for all disease-oriented organizations to provide feedback from the communities they serve. We are asking the Editor-in-Chief, José G. Merino, MD (Neurology® Editorial Staff) to review their protocols to permit lay organizations to respond with the voice of their patients and families.
* McAllister Paper: “Timing and Impact of Psychiatric, Cognitive, and Motor Abnormalities in Huntington Disease” Neurology® 2021;96:e2395-e2406. doi:10.1212/WNL.0000000000011893
As of November 3, 2021, we are continuing all efforts to communicate with Editor-in-Chief, José G. Merino, MD., and the Neurology® Editorial Staff. We have received an email stating that the editors are open to our submission. I will update this article as we receive additional updates on this matter.