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Our
10th Anniversary of Service to the Public:
March
31, 1998 to March 31, 2008
Thank
you for putting your trust in the American
Hemochromatosis Society
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May
2008 is National Hemochromatosis Genetic Screening &
Awareness
Month sponsored
by the American Hemochromatosis Society
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Important
Breaking News--April 25, 2008:
US
Senate passes bill banning employers, insurers from discrimination
based on DNA tests
By JIM ABRAMS, AP Posted: 2008-04-24 WASHINGTON
(AP) - People learning through genetic testing that they
might be susceptible to devastating diseases would not also
have to worry about losing their jobs or their health insurance
under anti-discrimination legislation the U.S. Senate passed
Thursday.
The 95-0 Senate vote sends the Genetic Information Nondiscrimination
Act back to the House of Representatives, which could approve
it early next week. President George W. Bush supports the
legislation.
The bill, described by Sen. Edward Kennedy as "the first
major new civil rights bill of the new century," would bar
health insurance companies from using genetic information
to set premiums or determine enrollment eligibility. Similarly,
employers could not use genetic information in hiring, firing
or promotion decisions.
"For the first time we act to prevent discrimination before
it has taken firm hold and that's why this legislation is
unique and groundbreaking," said Sen. Olympia Snowe, a Republican
who sponsored the Senate bill.
There are more than 1,100 genetic tests available today,
she said, but these are "absolutely useless" if fear of
discrimination discourages people from taking tests or participating
in clinical trials.
Genetic testing could lead to early, lifesaving therapy
for a wide range of diseases with hereditary links such
as breast and prostate cancer, diabetes, heart disease and
Parkinson's disease.
"But right now the ability to realize those goals is somewhat
limited" because of patients' fears that the information
will be used against them, said Dr. David Herrington, a
professor of cardiology at Wake Forest University and spokesman
on genetic issues for the American Heart Association. The
legislation "will help them both be more willing to participate
in research and avail themselves of the benefits of genetic
testing."
Congressional efforts to set federal standards to protect
people from genetic discrimination go back more than a decade,
to a time when there were only a small number of genetic
tests. But now, with the mapping of the human genome in
2003, people have access to far more information about their
hereditary disposition to such crippling afflictions as
cystic fibrosis and Huntington's disease.
Bill sponsors said that has increased the likelihood that
a prospective health insurance company or employer will
reject a person because of concerns that person will suffer
a costly disease in the future.
The Senate passed genetic nondiscrimination bills on unanimous
votes in 2003 and 2005 but could not get the House to act.
A year ago the House approved a White House-backed bill
on a 420-3 vote.
Senate action on that legislation has been slowed by Sen.
Tom Coburn, a Republican who joined some business groups
in warning that the bill could encourage a flood of lawsuits.
A compromise worked out earlier this week tightens language
to ensure there is a "firewall" between the part dealing
with health plans and the section regarding employment,
so as to discourage inappropriate claims.
It also makes clear that, while individuals are protected
from discrimination based on genetic predisposition, insurance
companies still have the right to base coverage and pricing
on the actual presence of a disease.
On the Net:
Congress: http://thomas.loc.gov/
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We
are saddened to report that Joseph
Burghard Thomas,
board member and major benefactor of the
American Hemochromatosis Society,
passed away on Monday, August
27th, 2007.
Joe was the father of AHS president
and founder, Sandra Thomas.
He will be deeply missed.
Joseph Burghard Thomas Obituary
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See the January
8th, 2007 issue of US News & World Report
Magazine available now --AHS
president, Sandra Thomas and the
American Hemochromatosis Society are
mentioned in this article by Nancy Shute on genetic testing
and its future.
"...Ever
since a gene that causes the disease was detected in 1996,
doctors have debated widespread screening. Sandra
Thomas, president of the American Hemochromatosis
Society, encourages people who contact her to
use DTC tests and thinks that everyone should be screened
for the disease, which killed her mother."
Do-it-yourself
genetic tests promise to reveal your risk of coming down
with a disease. But do they really deliver? For
the full story, go to: 
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MediFocus
Guidebook on Hereditary Hemochromatosis
Medifocus has published an excellent rescource and information
guide for patients and families concerning Hereditary
Hemochromatosis.
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Visit
the AHS Neonatal Hemochromatosis (NH) Site
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"Dylan"
(left) has Neonatal Hemochromatosis (NH).
AHS has launched a web site for this rare newborn
iron disease. Learn more about NH in newborns
and the exciting new treatment which offers new
hope for pregnant women who have already had an
NH baby.
If you
have an NH baby, please email or call us at 407-829-4488
so you aren't going through this experience alone.
There are others who have been through this same
experience and doctors who are eager to help in
any way they can. |
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Visit
our web site for Neonatal Hemochromatosis (NH) at:
www.neonatalhemochromatosis.org |
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Find
a physician! See our new updated "Expert Physician & Referral
Page"! Or, recommend your doctor for the AHS
referral list. Click here to see the physician map! 
If
You Love Raw Oysters and have HH....read this!
Raw
Oysters can be deadly for hemochromatosis
patients with liver damage. HH patients should never
eat raw oysters!  |
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Check
out the YouTube video created by the Canadian Hemochromatosis
Society:
www.youtube.com/watch?v=UeRr-S2aWrY
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Does your blood bank use Hemochromatosis
blood as donor blood?

The FDA has now posted a list of
blood banks that use hemochrmatosis patients' blood as
donor blood because of the tireless work of our Executive
Director, David Snyder. Please click on "More
Info" to see the FDA list.

The
FDA approved the use of iron overload, Hemochromatosis
blood as donor blood in 1999 and allows Hemochromatosis
patients to get treated for free. Click here to learn
how to help your local blood bank to participate!

Read a journal about Josephine Thomas, "The Iron
Angel" on AOL
Be sure to check out the Journal
on AOL called "The Iron Angel".
This AOL Journal shares personal thoughts and photos of
AHS founder, Sandra Thomas, and her mother, with you and
others online, and even allows you to add your own comments.
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But
what should I eat? Questions about
diet and hemochromatosis?

We hear this question
almost every day from patients and their family members all over
the country. Although diet is usually not used to
control or manage hemochromatosis, there can be important things
to know about what to eat or not eat. If you want more information
about diet & hemochromatosis, plus recipes, we recommend,
Cooking with Less Iron by Cheryl Garrison.
Another good reference book is Guide to Hemochromatosis.
You can order these publications through www.amazon.com
or go to: www.irondisorders.org
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Thinking
about having a liver biopsy? FerriScan could be your non-invasive
alternative! Read more about this
new technology and where you can find it at:
www.resonancehealth.com
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Get
tested!! 12 Years: That's how long it has been since
the discovery of the HFE gene mutation in August 1996 for the
gene mutation for hereditary hemochromatosis (HH). Above, David
Snyder, AHS vice president and Sandra Thomas, AHS president, demonstrate
how to painlessly use the DNA cheek swab stick to collect a sample
to send to the lab. Results are ready in about a week to
ten days. A commercial test has been available since 1997
and direct access testing (DAT) has been available for several
years, yet most patients do know know that they can test themselves
for hereditary hemochromatosis. To order a test
kit call HealthCheckUSA at: 1-800-929-2044 or go
to their web site for more information on Hemochromatosis tests:
www.healthcheckusa.com
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American
Hemochromatosis Society (AHS) has served the American public for
10 years:
March
31, 1998/March 31, 2008
Thank
you for putting your trust in AHS!!
Sandra
Thomas & David Snyder of AHS, with
Joe B. Thomas (seated), board member, observe
the 8th anniversary of AHS while displaying a framed medical feature
article on hereditary hemochromatosis from the January 2004 issue
of Hepatitis Magazine.
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"Medicine
for the Public" Lecture about
Hereditary Hemochromatosis
Given
by: Dr. Susan Leitman on Tuesday, October 21, 2003 at
NIH . Click
here to see the video.
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Before
you see your doctor to find out whether or not you have hemochromatosis,
please know that a "formal" diagnosis of hemochromatosis
on your medical records may put you at risk of being denied health
insurance, life insurance, and long term care insurance in the
future. Why? Because the insurance industry doesn't
like "hereditary hemochromatosis" and what it can do
to the body and it certainly doesn't like the kind of medical
bills that it can create for the patient. It considers hemochromatosis
to be a potentially fatal disease which will cost them a lot of
money before the patient dies. Of course, hemochromatosis,
when diagnosed early, does not cause organ damage or death, and
the patient will have a normal life span. In addition, the
patient is not going to cost the insurance company a lot of money.
The problem is that the insurance industry is behind the times
when it comes to judging insurability of a HFE-associated hereditary
hemochromatosis patient. What can you do? If
you think you are at risk for having hemochromatosis, you must
be tested. However, you can easily test yourself to find
out if there is indeed any genetic risk. How can you do
that? By contacting HealthCheckUSA based in San Antonio,
Texas, which markets the DNA test kit made by Kimball Genetics
lab, a CLIA accredited lab, based in Denver, Colorado. To
learn more about HH testing you may go to their web site: www.healthcheckusa.com
The toll free number is: 1-800-929-2044. Ask for a DNA genetic
do-it-yourself home test kit for the HFE gene mutation for hereditary
hemochromatosis (HH) and the hemochromatosis blood panel
which includes percent of saturation and serum ferritin, two of
the main blood tests used to confirm a diagnosis. Many patients
have used this testing method known as "DAT" or direct
access testing, which keeps the results private, confidential
and for your eyes only, thusly protecting your insurability.
The DNA test kit is about $195.00 and the hemochromatosis blood
panel is about $50 to $70 depending on the local lab that you
use to draw the blood. Please note that AHS does not, nor
ever has, received any monetary compensation for referring patients
to this, or any, lab. Results are sent directly to the patient;
and based on your test results, you can decide how to proceed.
Early stage cases may only need to donate blood from time to time,
other cases, which are more advanced, will need to be evaluated
by a medical expert in the field of hemochromatosis. Those
patients with advanced stages of hemochromatosis and associated
symptoms and conditions, should wear a "medic alert"
bracelet at all times so that medical personnel will know they
have HH.
Patients
requiring an expert in hemochromatosis should click: Here
Sandra
Thomas, President, American Hemochromatosis Society |