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ESPN2 - Quite Frankly with Stephen Smith - October 20, 2005

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Lisa Salberg Find out more about Lisa Salberg
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  • ESPN2 - Quite Frankly with Stephen Smith - October 20, 2005

    Hello everyone!

    Tonight I will be participating on a talk show on ESPN2. The topic of our talk is the use of "genetic testing" in athletes. While we all know this is a very personal matter it has been subjected to mass misinfomation in the media and it is my hopes that tonight we will be able to clear some of this up.

    In short this is what I am planning on talking about:
    1. We should all call our congress person and demand passage of HR 1227 the Genetic nondiscrimination act - currently pending in Congress and has already passed though the Senate.

    2. I hope to clearly explain the differences between genetic "screening" and the use of genetic testing in someone with suspected disease.

    3. I will be explaining that this information should be kept private and not appear in the newspapers without the consent of the patient.

    4. The athlete has every right to decline testing.

    5. Teams have the right to use all cliniclly available tools to ensure the players health. Players must agree to all testing or the test can not be done.

    6. If the NBA or other team wanted to screen all player to see if they carried a known gene for HCM - The HCMA would strongly oppose such actions. Presents of a gene mutation does not mean you have clinical HCM, thus should not be used to evaluate the health of the player.


    I will post later and let you know how it all goes!

    Take care,
    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)

  • #2
    Good luck, Lisa! I know you will make us proud and say all that is needed to be said.

    Sharon

    Comment


    • #3
      Lisa
      I'm so proud of you. You are the voice of so many of us. You go girl!

      Can this be seen tonight or will it air later?

      Thank you, Lisa, for everything you do for your fellow HCM'ers.

      Take care and good luck
      Esther

      Comment


      • #4
        What time will this be broadcast?
        Leon

        Comment


        • #5
          This is to air tonight on ESPN2 they told me it will be on at 6:30pm on the east coast - check your local listings for more specific times.

          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)

          Comment


          • #6
            Here in Phoenix AZ... 'Quite Frankly with Stephen Smith' airs Thursday October 20 at 3:30pm and again at 9:30pm.

            I will be watching.

            Thank you Lisa for all the wonderful and important work you do.
            You are helping so many people.


            YAY! How exciting-- Good luck, you will be great!


            Hugs always,
            Eve
            49 yrs. old
            Diagnosed at 31.
            Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
            First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
            Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
            Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
            My brother passed away suddenly at 34 yrs old from HCM.
            2 teenage children, ages 17 and 15.

            Comment


            • #7
              My In Laws were in town because my son had his tonsils out. It was his birthday so we decided to eat out to celebrate and he picked a sports bar because he wanted to try to play pool.
              So were munching away, with big screens all around. I look across the restaurant at a big plasma TV and suddenly I say to Sandy "Look at that TV, isn't that Lisa?"
              Couldn't hear a word that was said so I'll have to tape the one they play overnight.
              Lisa, you looked marvelous!!!
              Fx

              Comment


              • #8
                You are too funny....

                The program was not exactly what I was expecting and I was not able to hear the first segment as I was in the "green room" and then walking down to the studio. I only heard a small part of the conversation prior to being on stage.

                I attempted to make the points I listed above - I think I got most of them out. I was very upset with Stan Chestly who made a horrible statement about "playing violins for dead athletes" - I called him on it and he apologised on air.

                All feed back is welcomed - let us know what you thought!
                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)

                Comment


                • #9
                  Lisa - Good job! You were by far the most articulate person on that program. The lawyer in particular was fairly terrible. Have you ever read any George Orville? I think his novels can be found in the popcorn section of the nearest supermarket.

                  Anyway, I think that you did an excellent job of presenting the issues and giving a human face to this controversy. My husband (who is an extreme libertarian and has been very vocal about the player's right to play regardless of his diagnosis if he so chooses) also thought that you were great.

                  Accolades from over here on the West Coast......

                  Cynthia
                  Daughter of Father with HCM
                  Diagnosed with HCM 1999.
                  Full term pregnancy - Son born 11/01
                  ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                  Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

                  Comment


                  • #10
                    I saw it, and Lisa, you did a fantastic job.

                    That lawyer's comment about "playing violins for dead athletes" was totally uncalled for, completely unprofessional, shameful and cruel.
                    You did a great job calling him on that.

                    That lawyer was a very typical hard-nosed attorney that will say anything or use any strategy to make people believe he is right. Lawyers hate to lose. They will do anything so that they will win the debate or argument.

                    HCM is serious, as we all know it can and has been deadly, especially when competitive sports are involved. This condition is not benign when sports are involved.

                    HCM is a condition that is in a whole different class all to itself because of the potential severity of it. And when involving professional sports, HCM cannot be classified with other conditions that are not life-threatening such as a bad knee or a torn rotator cup. You did a really great job voicing the concerns regarding HCM and competitve sports.

                    Lisa, you went up against one of the most outspoken, powerful and famous attorneys there are out there. You did very well and held your ground completely.

                    Lisa, you did a great job conveying that HCM is serious and that your assoiciation is saving lives. You were very well spoken.

                    I feel so proud and honored to know you.

                    And by the way, thank you infinitely for saving my life. If it was not for you, I would have never known about The Cleveland Clinic Foundation.

                    Respectfully,
                    Eve
                    49 yrs. old
                    Diagnosed at 31.
                    Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                    First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                    Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                    Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                    My brother passed away suddenly at 34 yrs old from HCM.
                    2 teenage children, ages 17 and 15.

                    Comment


                    • #11
                      Well thank you guys! I have to admit I did stress a great deal over this interview because of its wide scope. Stan was very aggressive on camera and off - a pussy cat who told me he thinks we basicly agree?!?

                      Of course I have replayed it in my mind and wish I had the chance to say a few more things but I was not given the time. In the end - I spoke the truth and we all know it. The HCMA firmly stands behind an individuals right to decline any medical test, if a doctor needs to conduct a test to confirm a diagnosis he/she should not be barred from attempting to conduct the test. The test must be taken with full consent. If a doctor feels the need to conduct a test to make a diagnosis and the player must have a medical to play then it is clear that there will be a stand off at some level. If a person has not complied with the testing a doctor needs to make a decision then the Dr will not be able to give the player clearence to play - that is the reality. I hope the Eddy Curry situation has taught the athletic world that medical information privacy is not a privacy right one gives up to play sports, some information should be kept confidential and not played out in the media.

                      This matter is far from over.

                      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)

                      Comment


                      • #12
                        Lisa,

                        You certainly did a great job trying to get your words in edgewise! Talk about a condescending , arrogant, overspoken, controlling, ignorant, lawyer. Boy he was by far one of the worst projections of image for lawyers that I have seen in a long time. You outshined him and kept your cool ( and I know he had to have gotten your BP up a bit) . You looked wonderfull , poised, controlled and knowlegeably authoritative.

                        I think that Reggi Lewis' agent had a difficult time with the lawyer as well but, when you came out , you both created a dynamic front that seemed to show how poorly prepared the lawyer was. I gasped when he initially referred to our condition as "apathy" and then tried to half correct himself, he was tripping over his own tongue with lack of factual parallels and information. His comparison examples were rediculous.

                        I feel strongly that the public would have sided with listening to you and the deceased Mr. Lewis' agent. In light of this I feel one more step has been taken forward in teaching the public about a disease called HCM.

                        You made us all proud Lisa... Thank you.

                        Pam
                        Dx @ 47 with HOCM & HF:11/00
                        Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                        Lead failure,replaced 12/06.
                        SF lead recall:07,extracted leads and new device 2012
                        [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                        Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                        Genetic mutation 4/09, mother(d), brother, son, gene+
                        Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                        Comment


                        • #13
                          I taped the 12:30AM episode but "Quite Frankly" I believe you ended up on the cutting room floor. But they still showed the Bill Buckner interview!
                          I guess having the having the game winning hit roll through your legs 19 years ago, is much more important then HCM.
                          So I saw it but didn't hear it.
                          Anyway that Tim could put together a .WMV file?
                          Fx

                          Comment


                          • #14
                            Originally posted by felixdacat
                            Anyway that Tim could put together a .WMV file?
                            Funny you should ask ... working on it now!

                            It will be on the main NEWS page this afternoon.
                            Thanks, Tim
                            Forum Administrator

                            Comment


                            • #15
                              i finally watched the show (thanks tim!) and i didn't think the lawyer made bad points (apart from his insensitivity). i also am not surprised that he said he generally agrees with lisa. what he said is that the choice to take a genetic test is the employee's, that the employer should not be allowed to compel him/her. these are all things lisa agrees with, right?

                              i think this was a non-argument. you have one guy talking about workplace rights and confidentiality--and lisa and the agent wanting to talk more about the employeee/patient's safety. it should just have been two separate subjects not positioned as being opposed to each other.

                              but what can you expect with a jackass like stephen a. smith moderating a discussion?

                              Comment

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