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Porphyria Educational Services


PORPHYRIA EDUCATIONAL SERVICES BULLETIN
Vol.1 No. 48    ~      November 21, 1999
FOCUS: Genetic Aspects of Porphyria

Did you know as a porphyric that your genes could be held against you?

Scientists are now able to predict, with increasing regularity,
the genetic abnormalities that may affect a person's health.  This
breakthrough includes the determining of porphyria.

Shockingly, this information which may help doctors treat and
cure diseases or at least give porphyric proper Intervention or Preventative
therapies,  is being used by insurance companies to deny patients access
 to insurance coverage and needed health care such as the simple use
ofintravenous glucose.

Even though you have no control over your genetic makeup and you may
never even develop a disease, some health insurance companies may deny
coverage just because you were born with a particular gene.  In addition it
has been found that some medical  insurers are disclosing this information
and using it against a person's relatives.

For example, genetic information used to identify a person's remains may be
disclosed to another source and then used to deny insurance for that person's
relatives -- without their knowledge or consent. This is discrimination.

This type of discrimination and improper disclosure threatens
the continuation of genetic research by the scientific and medical
communities, and ultimately could result in lost cures and treatments. There
needs to be a balance of the privacy of genetic information along with the needs of
medical researchers.  As porphyrics we must concerned with this type
of genetic discrimination.

We, as porphyrics, must ask legislators to introduce policies
that would prohibit health insurers from denying, canceling, refusing to
renew health coverage or varying the terms, premiums or conditions of
coverage on the basis of genetic information.

As with all things dealings with the disease porphyria, the
patient must take control and educate medical professionals and
the general public about the disease.  As porphyrics, we must also
guard our genetic heritage from discrimination.