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Let your voice be heard!

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Lisa Salberg Find out more about Lisa Salberg
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  • Let your voice be heard!

    Below is a letter you may wish to send in. All US residents should be very concerned about genetic privacy and know that NOW is the time to act. The HCMA has been a member of the "genetic alliance" for several years and are very proud of our association with them. Please print a copy of this letter and add your name to the bottom under Sharon F. Terry's. Sharon is a real fighter and while you may not know her she has been fighting for you for some time now.

    Thank you!
    Lisa

    __________________________________________________ _______
    April 1, 2004

    The Honorable J. Dennis Hastert
    Speaker
    U.S. House of Representatives
    Washington, D.C. 20515


    Dear Speaker Hastert,


    We urge you to consider and pass the Genetic Information Nondiscrimination Act [S. 1053], to prohibit discrimination on the basis of genetic information with respect to health insurance and employment. This bill was passed unanimously (95-0) in the Senate last year, is strongly supported by the President and currently sits at the desk in the House.

    We believe that all genetic information, including family history, deserves strong and enforceable protections against misuse in health insurance and employment. Such safeguards will protect the rights, privacy and confidentiality of the individual and their family.

    This is an exciting and hopeful time for genetic medicine. It is imperative, however, that we, the public, be able to take full advantage of new medical advances that could help prevent disease before it develops. Genetic nondiscrimination legislation will reduce the likelihood of genetic information being misused in health insurance or employment decision-making. Genetic information is merely predictive information. Simply having a positive genetic test does not mean one will develop a disease -- thus this information should not be used to make decisions about insurance coverage or employment.

    As biomedical research advances, genetic testing will become a critical tool in the provision of healthcare. As a result, many more people will know about their own genetic makeup, putting them at risk of genetic discrimination. These issues will affect you, your family members, neighbors and colleagues. We urgently request that you pass a genetic nondiscrimination bill that truly protects all of us from that risk now and into the future.

    Thank you for all your hard work and efforts on this critical issue. We look forward to continuing to work with you to ensure that the Genetic Information Nondiscrimination Act passes and can be signed by the President this year.

    Sincerely,


    Sharon F. Terry, MA
    President/CEO, Genetic Alliance

    And...
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

  • #2
    Re: Let your voice be heard!

    Thanks Lisa! I'll be sending one.

    Comment


    • #3
      Re: Let your voice be heard!

      No problem!

      You may see an email from "[email protected]" that email is a copy of this letter. It showed up in my mail box with a SPAM warning. Please know the HCMA will NEVER get involved with SPAM! This is an important Bill and I wanted you all to know about it!

      Be well,

      Lisa
      Knowledge is power ... Stay informed!
      YOU can make a difference - all you have to do is try!

      Dx age 12 current age 46 and counting!
      lost: 5 family members to HCM (SCD, Stroke, CHF)
      Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
      Therapy - ICD (implanted 97, 01, 04 and 11, medication
      Currently not obstructed
      Complications - unnecessary pacemaker and stroke (unrelated to each other)

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