Action Alert: Share Your Input

The National Tourette Syndrome Association (TSA) is looking for input on three topics:

    (1) Pending regulations for the Mental Health Parity Act
    (2) Application process for Social Security disability benefits
    (3) Genetic Information Nondiscrimination Act

Additional information is offered below the fold.

If you or someone you know wants to offer input on one or more of these topics, please send correspondence to Elridge Proctor at both her email address ( and primary fax number (202-408-3260).



MENTAL HEALTH PARITY: Congress passed a law last year requiring insurance providers – namely, those that offer both physical and mental health benefits – to make these benefits equal (i.e., the new law prohibits lesser benefits for mental health than for physical health issues). Although TS is an inherited, neurobehavioral disorder, it has historically been classified as a mental health disorder in the reference lists used by health maintenance organizations and insurers. Currently, agencies within the U.S. Departments of Treasury, Labor, and Health & Human Services are seeking public comment to instruct them, as they author the regulations that will guide the implementation of this new “mental health parity” law. The National Tourette Syndrome Association has already provided comments to the relevant agencies, asking (among other things) that their final regulations (a) provide clarity to the states on situations where state laws are stronger (require more) than the new federal law, and (b) require insurance providers to offer clear, written explanations when a mental health service is denied coverage. If you or your family has experienced one or more situations where TS treatments have been denied insurance coverage — or situations where you were provided a lesser benefit than for a physical health issue — please share those experiences in writing with the National TSA.

SOCIAL SECURITY DISABILITY BENEFITS: The National TSA continues to lobby the Social Security Administration to add TS to its list of “compassionate allowance” conditions. That action would likely improve the prospects of individuals who apply for Social Security disability benefits because their symptoms are so severe they cannot work or hold a job. Various TS families and individuals have reported considerable frustration when they have applied for such benefits, including situations where they have been denied benefits even after they have provided “substantial documentation of diagnosis and detailed medical history.” If you or someone you know has attempted to apply for such benefits, but has been denied or encountered major obstacles during the application process, please share those experiences in writing with the National TSA.

GENETIC INFORMATION NONDISCRIMINATION ACT (GINA): Like Mental Health Parity (noted above), GINA was signed into law last year. The National TSA expects there will soon be a public call for comments on how to best implement GINA, which prohibits health insurers and employers from discriminating against individuals — i.e., denying coverage or charging higher premiums — on the basis of genetic information gathered during clinical trials or through other methods. If you or your family have encountered any such discrimination (related to TS), by an employer or insurer — or if you have general thoughts about what protections you expect GINA to provide — please share those thoughts in writing with the National TSA.


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