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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 ******************************************* May 2008 is National Hemochromatosis Genetic Screening & Awareness Month sponsored by the American Hemochromatosis Society *********************************************** 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/   ************************************************** 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 *********************************************** 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. Unraveling Your DNA's Secrets "...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:  ******************************************* MediFocus Guidebook on Hereditary Hemochromatosis Medifocus has published an excellent rescource and information guide for patients and families concerning Hereditary Hemochromatosis.           ******************************************** Visit the AHS Neonatal Hemochromatosis (NH) Site  "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.   Visit our web site for Neonatal Hemochromatosis (NH) at: www.neonatalhemochromatosis.org
	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!
	Check out the YouTube video created by the Canadian Hemochromatosis Society: www.youtube.com/watch?v=UeRr-S2aWrY
	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.

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

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

We need you! Become a Member Online! Donate Online!

Has this web site helped you in your search for information on hemochromatosis?   Has a phone call to our office, a visit to our web site, helped you get a diagnosis of hemochromatosis for yourself or a loved one?  If so, please help us to carry on our quest to educate the public and medical community about HFE-associated hereditary hemochromatosis.  The American Hemochromatosis Society (AHS) is a non profit 501(c)3 health organization dedicated to increasing awareness about HH.  You may become a member or make a tax deductable donation through our secure web site or through the mail. Donations may be made to honor the memory of a friend or loved one or to hononr someone who is living, such as the doctor who diagnosed you and saved your life from hemochromatosis.  Remember the American Hemochromatosis Society in your will or trust.  Help us to save help others through your generous giving.

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