Tuesday, February 6, 2007

GINA Talking Points

When you talk to a member of an elected official's offce you should introduce yourself and talk about your relationship with HD. Highlight your personal experiences with the disease and how important the vote for GINA is for you and your family.

In addition you should make sure that most, if not all, of the following points are brought out during the discussion.

  • Huntington's Disease is a devastating, hereditary, degenerative brain disorder that slowly diminishes a persons ability to walk, talk, think and reason.
  • HD is caused by a defective gene, and every person who has the gene has a 50/50 chance of passing the gene along to their children.
  • HD affects both genders and all ethnic groups equally.
  • Presently, there are no effective treatments and no cure for Huntington's Disease.
  • Individuals with the defective huntingtin gene usually develop symptoms of Huntington's Disease between the ages of 30-50. Until then they live full, normal, healthy lives.
  • Fear of genetic discrimination dissuades many at-risk individuals from entering into clinical trials, or undergoing genetic testing which hinders progress towards treatments and a cure.
  • HIPPA and the ADA leave gaps in privacy protections for individuals who are affected with conditions that have a genetic cause.
  • The Genetic Information Nondiscrimination Act (GINA) would ensjre that no person would face discrimination in employment or insurance based on genetic history.
  • GINA is necessary for those living at-risk for disease like HD to feel protected if and when they decide to be tested or enter into a clinical trial.
I'm not sure why the following wasn't included on HDSA's GINA talking points but I'd add the following:

  • A positive gene test may result in a person being unable to acquire health insurance years before any symptoms of HD are manifest and as a result going on a health care program funded by public taxes when they could be under an employer funded health care program.


Anonymous said...

Hi Steve,
I think that what you are doing in advocating for the needs of families with HD is crucial. Raising awareness has got to be the bedrock on which good care and provision is based. Would it be an idea to provide a leaflet when talking to officials? Or do you already do that? All the best in your campaign.

pass4sure ccda said...

i Agree with DEE as Raising awareness has got to be the bedrock on which good care and provision is based.

Chassidy said...


Anatswanashe said...

interesting blog. It would be great if you can provide more details about it. Thanks you

Family Advocate Pretoria