This bill (H.R. 493) was recently introduced to the House. From the perspective of a Huntington's disease family member THIS IS ESSENTIAL LEGISLATION. There are many who are against it for reasons of their own.
Insurance companies want to reduce their risk so that they can both keep their insurance premiums lower and thereby more competitive - as well as maximize their profits. If they can defeat this legislation, and they will certainly try, then they win and HD family members lose.
Those non HD family members who only care about their insurance premiums will also be lobbying against this. As noted in the bill, In times past there have been efforts by state legislators to pass laws that use genetic information to exclude individuals from proper and fair health care.
Health insurance is about sharing risk but it's unfortunate that many insurance companies would prefer to eliminate risk rather than adjusting premiums to account for it. All insurance companies must be forced to share this risk through legislation at a Federal level. If one starts excluding a group of individuals in order to be able to deliver a lower premium then the others will quickly follow in order to avoid losing market share. Presymptomatic individuals will be forced to go without health insurance and much of the cost of their medical care will be picked up by the public and paid for through taxes (rather than being paid for by the individual).
Let's start the lobbying efforts and make it intense. Write your representatives. Write the editor of your paper. Share your experiences. I believe that this is the second time around for this legislation, but I wouldn't trust that the third time will be the charm.
For your guide to start your personal lobbying efforts go to: http://www.hdac.org/pac/
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