- CureHD Foundation -
Dedicated to funding a cure for Huntington's Disease.

Robert Bishop
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The cruelest illness

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Make a donation
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Ask legislators...

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CureHD Foundation
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Genetics is somewhat new and therefore not much has been done to protect those who are predisposed to get a terminal illness (or frankly, those who already have it).

Ask legislators to protect genetic information...
If you had HD in your family and you tested positive for the HD gene here's what can happen to you:

  • The fact that you carry the HD gene can be easily obtained by insurance companies (unlike AIDS, HD testing is NOT offered anonymously).
  • You can no longer obtain health or life insurance (i.e., even if statistically your probable age of onset for HD wasn't for decades, you would still be uninsurable).
  • If your current insurance carriers find out you have the HD gene, they'll use whatever loophole they can to drop your coverage (over time).
  • Your children can no longer obtain life insurance unless they test negative for the HD gene.

Ask legislators to require parity for health insurance benefits...
Insurance companies are denying health benefits to HD patients by categorizing their treatments as "psychiatric." Once the maximum life-time benefits for psychiatric care are reached (often only $25,000), coverage for future claims are refused.

HD symptoms are usually treated with therapies developed for other illnesses with similar symptoms (whether physical or psychological). The psychological symptoms of HD are treated with psychotropic drugs (e.g. anti-depressants, anti-psychotics, etc.). These are very powerful drugs that can have unpredictable side effects (especially when combined together). Medicine combinations are tricky and many times these changes must be made in a controlled environment (e.g., hospital psychiatric ward).

It's ridiculous to assert that treatments for a genetic, neurological disorder are "psychiatric." Nevertheless, insurance companies are doing this every day.