Dr. Shephard's packet submitted to SSA through NORD consists of:
- Dr. Shephard's paper depicting the scientific basis for the cause of TMAU with a brief summary of the disorder and manifestations,
- MEBO Research letter to Social Security Commissioner Michael Astrue written by Maria de la Torre, Founder and Executive Director and Colin Harvey-Woodworth, MEBO UK's Scientific Director describing the quality of life of a person living with TMAU,
- Document written by Dr. Cheryl Fields, MEBO US's Community Outreach Director in support of this nomination, and
- A personal testimonial written by MEBO UK's Public Relations Director, Karen James.
Shortly before New Years Eve 2011-2012, Dr. Elizabeth Shephard contacted MEBO Research advising that NORD was seeking her help in identifying TMAU as one of the most disabling rare diseases so that those who have them qualify for expedite review of applications for Social Security Disability assistance. See the Social Security Administration (SSA) Compassionate Allowances page.
A subset of these impairments [that have sufficient medical evidence to qualify as disabling] are ‘compassionate allowances’ made for conditions known to be chronically disabling that can be verified with minimal medical information. These conditions, like most rare diseases, are often systemic, have no indicated treatment, and are genetic in nature. NORD > Advocacy > Current Initiatives and Issues Updates
The guidelines and explanation of this program provided to Dr. Shephard by NORD explain,
Because Commissioner Astrue has previous knowledge of what it's like to live with a rare disease, he created the Compassionate Allowances Program early in his tenure at SSA. Currently, there are 113 diseases on the list, and several are ones that NORD medical advisors have suggested. SSA has also gotten strong support and much input for this program from rare disease experts at NIH and elsewhere…Before Commissioner Astrue completes his six-year term at SSA, he would like to roll out one more expansion of the Compassionate Allowances list, possibly adding enough diseases to bring the total list to 200 medical conditions. He and his staff are asking NORD (and others, including NIH medical experts) to suggest diseases for this expansion.
Needless to say, MEBO Research has enthusiastically worked to support Dr. Shephard as she spearheaded her nomination of Trimethylaminuria as a condition to be considered for inclusion on the ‘Compassionate Allowances’ list. On a one and a half hour conference call with her, we strategized and determined our course of action.
Since we must submit our list to SSA by mid-January, we would need to receive your suggestions by January 13. SSA will spend a period of several months vetting all input provided to them by NORD and others. They plan to announce their final decisions regarding diagnoses to add to the list in late 2012.
MEBO Research aspires and intends to do all possible to further the list to include future system body odor conditions as they are identified through formal research efforts MEBO intends to initiate with the medical community. As stated in MEBO’s letter to Commissioner Astrue,
We urge you [Commissioner Astrue] to consider providing people in the United States with this opportunity to come out from their systematic socially imposed “solitary confinement.” Consequently, if you provide us with this benefit, MEBO Research will then use this listing to present to other governments as an example of how cost-effective special programs such as these could open doors to such a restrictive disability and thus allow patients to be productive citizens while we wait for research to find a cure.
María de la Torre
Founder and Executive Director
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