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Effort to Upgrading PPE in Maryland

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  • #1

    Effort to Upgrading PPE in Maryland

    I am sorry that I did not think of this earlier.

    The Grandmother of a SCD victim (due to HCM) who lives in Maryland is working with her local state representative to upgrade high school and middle school Preparticipation Physical Exam forms and requirements. The state representative has proposed a bill to form an evaluation committee. The committee will be taking testimony on Wednesday March 3 in Annapolis, Maryland.

    HCM members in Maryland who may wish to support this effort may send me a private message and I will help you get in touch with the lady.

    Sorry for the late notice.
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  • #2
    Re: Effort to Upgrading PPE in Maryland

    Stew, I just spoke her and I am truly impressed. She is working very hard to improve screenings for our young people. Linda

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    • #3
      Re: Effort to Upgrading PPE in Maryland

      I would give my 110% support to her efforts, I only wish I knew of them sooner!
      If anyone wonders what the HCMA thinks...WE SUPPORT BETTER PREPARTICIPATION SCREENINGS!!!

      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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      • #4
        Re: Effort to Upgrading PPE in Maryland

        I have sent an email to the sponsoring delegate with additional concerns to consider - how to provide screening for those who don't play sports?, public awareness of symptoms to investigate, and greater availability of AEDs. I found at least one other person to do the same - it was short notice. I contacted a pediatrician who planned to respond. Hopefully, the time will be given to our speaker to adequately explain her plans and concerns.

        http://mlis.state.md.us/2004rs/billfile/HB1322.htm

        Above is the site to view the proposed bill. It can be viewed by clicking First Reading at the bottom of the page. Del Rosenberg, the sponsor, can be emailed by clicking on his name at the top. The hearing is at 1 pm today, but if it passes, the committee will need to be formed, etc. So there is still some time for input. Linda

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        • #5
          Re: Effort to Upgrading PPE in Maryland

          I'm sorry I didn't read this until this everning. I live in Annapolis and may have been able to go to the meeting. I will try to follow this and see if there is anything I can do.

          Ralph

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          • #6
            Re: Effort to Upgrading PPE in Maryland

            Stew, How did the hearing go? Were you there? Linda

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            • #7
              Re: Effort to Upgrading PPE in Maryland

              I just got an update, the hearing went as scheduled, now waiting for the House to vote. If it passes, it goes to the Senate for another hearing. So, no real news, but everything has to start somewhere. Linda

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              • #8
                Re: Effort to Upgrading PPE in Maryland

                Sorry, I did not provide an update earlier. I can only get into the message board at work, since my AOL and the HCMA site do not want to cooperate, and some days jsut cna't get the time to get on.

                The heariing was held on Wednesday March 3 as scheduled. Carol Boslet (grandmother of Ryan Boslet [GA] who passed away February 2003) of Annapolis is the Bill (HB 1322) champion. Her "delegate" Sandi Rosenberg sponsored the Bill. The Bill is to create a Medical Advisory Committee to advise the Maryland PSSAA relative to PPE forms and procedures. Carol and I both testified. It was a new experinece for me. The Delegate Committee on Health and Government Operations listened, and asked one or two questions. Two other people were called to testify but did not appear. Carol is somewhat disappointed in the wording of the bill. It does request the MAC to evaluate upgrades to the cardiac portion of the PPE and to consider feasibility of requiring EKGs.

                We met Ed Sparks, Jr., the Executive Director of the MPSSAA outside the hearing room. We spoke for several minutes before and after testifying. His initial comments to us were that he thinks the MPSSAA follows the intent of the Bill now. [He sent written testimony of this thought.] He stated that the MPSSAA uses the guidelines for the PPE verbatim as presented by groups such as the AHA, AMA, and College of Sports Medicine.

                Carol's intent is for the MAC to look beyond what the AHA, AMA, and CSM now recommend. I believe Carol was going back to Sandi to see if some revisions could be included. I will update as Carol keeps me informed.

                A big key that Carol and I feel is necessary is education of sudents, teachers, coaches, doctors, etc. about the existence of HCM. But we all know that there is a ton of work still to do.

                We thank Kelly in the office and Sharon Bates of Anthony Bates Foundation for providing last minute info and encouragement.

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