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NIH to end HCM program

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Lisa Salberg Find out more about Lisa Salberg
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  • NIH to end HCM program

    The HCMA was informed yesterday that the NIH will be shutting down its HCM program. This news will be of great concern to those currently being treated under any NIH protocol. Letters are being sent out from the NIH to all parties who participated in any protocol and were actively being seen at the NIH.
    This is a major event for those families who had been seen at the NIH for many years. We know many families will need to seek out the care of HCM specialists and we are preparing ourselves to handle all of your needs.
    The closure of the NIH’s HCM program brings to an end an era of research that had some amazing highs and some unfortunate lows. We can thank the early years of the program for marked advances in our understand of HCM and to the creation of the myectomy. Sadly, the program is being closed after 8 years of many questions and problems.
    If you are currently being seen at the NIH and have specific questions please contact them directly. When we have more information it will be posted on the board.
    Sincerely,
    Lisa Salberg
    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
    Why ARE THEY SHUTTING DOWN THE program???????

    Comment


    • #3
      From what I have been advised the NIH can no longer provide a service that is unique and not available elsewhere. The Cleveland Clinic and the Mayo Clinic were 2 centers noted as those who could provide care for HCM patients. Further, the past 8-10 years have been difficult for the program and appears, from what I have been told, that replacing the staff of the center is not possible for several reasons. One reason was poor compensation available to pay the staff as it is a government operation and private industry and hospitals pay better.
      Further I was advised that the NIH no longer provided anything new to research in the area of HCM.
      When I have more details I will post them.
      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


      • #4
        research

        In my limited understanding of what went on at the NIH, I got the impression that they were a research operation and treatment was secondary. Research is being cut and underfunded all the time and if they couldn't attract people to come and do research and try and get more money, then they have to close up shop.

        While I know how hard is to change from one doctor to another, there are enough other fantastic HCM centers on the eastern seaboard to make up the difference.

        S

        Comment


        • #5
          Well, yes and no... research is being funded much of it is in extramural (outside of the NIH) centers. The program within the NIH has not provided any meaningful advances to the treatment of HCM, risk statification or our understanding of disease progression in nearly 10 years. A search of the medical data show this clearly. The NIH has to focus its efforts in areas that are going to lead to meaningful changes in the understanding of the treatment and management of various conditions.
          The funding that had been spent over the past several years has not produced anything meaningful. For this and other reasons I have maintained contact with the NIH over the years in hopes that these valuable research dollars would someday soon be focused in a direction that would help to improve the quality of lives for those with HCM.
          Time will tell if additional funding will be routed into meaningful efforts. You can rest assured that the HCMA will be fighting for you all in efforts to secure this funding to advance research.
          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
            Lisa, I just want to clarify one small detail, just so we are not causing confusion in the community. NIH is closing only it's HCM Protocols, and that is the only medical condition we are referring to on this message board. Although I am sure this is clear to those of us who read this board regularly, a one-time visitor may mistake the message for other diseases/conditions to be included. The NIH has many different institutes on the campus at Bethesda and awards funding to many other leading facilities thru-out the nation to study different conditions. Hopefully, the National Heart, Blood, and Lung Institute(under which HCM was studied) will be able to award some of it's annual budget to the study of HCM at some of our other fine facilities thru-out the nation. Unfortunately for people who were participants in the HCM protocols at NIH, they will find themselves in the position of wondering what their next step for care is to be. I don't have any idea about guidance to be offered by the NIH. They will be searching for an appropriate care provider and may not really know how to go about finding the best option for themselves. I suspect we will be hosting many new visitors to this site, and we, as a group need to do our part to help them through this time which is bound to be difficult for them. Many will have had 10+ yrs of care at the NIH and will be leaving nurses, technicians, and other support staff they have grown very close to. They will not only be losing a familiar place of care, but facing a totally different financial system. For those of you who do not know it, the NIH care was not subject to insurance reimbursement. The care was provided free of charge to participants, so was attractive to many who were faced with tremendous medical bills in our regular medical care system. This will be another burden to many. We all know how expensive health care is, and even more so to those who are not physically able to work or do not have insurance as an employment benefit. I am confident that everyone here will try to be understanding and helpful as we greet new participants who are very confused and anxious as they sort thru the new things that lie ahead. Linda

            Comment


            • #7
              UPDATE:
              April 2nd, however, Dr Fananapazir will be leaving the Institute as he has
              > decided to take a position as Director of Health Services, at the Bahá'i
              > World Center, in Haifa, Israel. The Bahá'i faith has
              > .... As such, Dr. Fananapzir will be moving with his wife to Israel
              > to begin this new chapter in his life.

              ... I can assure you that we at the NIH are
              > committed to working with you and your local physician in helping you
              > through this transition period.

              This is a portion of the letter that was sent by the NIH to announce the closing of the HCM program.

              When I know more I will advise.

              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


              • #8
                Hi,

                We got our letter! I was surprised to see how Fananapazir based it was - he was certainly the focus.

                Roy,my husband, has been going to NIH since he was 16.....he'll be 50 next month! Anyway, that institution was wonderful for his family years ago - a real source of support for the family. All his aunts and uncles were patients as well. NIH did some wonderful stuff years ago when Drs. Stephen Epstein & Barry Maron were there, but much has changed since then.

                We did lose our faith in recent years. Roy and I were actually there for a follow up at the time when Dr. Fananapazir implanted the pacers in the children which was an extremely controversial approach. I'll never forget that visit cause he pushed hard to get out children for an eval. He always pushed too hard when it came to our children & that bothered me.

                Even though we didn't hold NIH in the highest regard as we did in the past, we liked to see what they recommended for Roy each year. Along with Roy's local cardiologist, we see Dr. Sherrid yearly. I like to hear everyone's thoughts - I guess it could be confusing to some, but it really isn't.

                Karen

                Comment


                • #9
                  Nih

                  I HAVE TO ADMIT, I WAS PLEASED TO SEE DR. F LEAVING THE PROGRAM.
                  HE PUT MY LIFE IN JEOPARDY AND I FEARED FOR OTHERS WHO WENT THERE. IT WAS NOT EXPLAINED TO ME THAT THEY WOULD ONLY STUDY MY HCM AND NOT BE CONCERNED IF TREATMENT WAS NEEDED.
                  I AM SORRY TO SEE THE PROGRAM SHUT DOWN AS I REALIZE IT WAS BENEFICIAL IN HELPING FAMILIES WHO COULD NOT AFFORD THE COSTS OF ALL THE TESTING INVOLVED.
                  I AM SURE HCMA WILL STEP UP AND HELP THOSE WHO NEED TO FIND NEW SOURCES OF CARE AS THEY ALWAYS HAVE.

                  Comment


                  • #10
                    Nih

                    I also was a patient at NIH and I received my letter the other day.In 1997 they put a pacemaker in me, and in 2002 they sent me to Georgetown University Hospital in Washington DC for Alcohol Ablation I was told by the doctors at that hospital that NIH would follow up on me.

                    About 8 months after I had the Ablation done I called them and said I wasn't feeling well and could they see me I was told to go to my own Physican for help, I just felt as those they did not care for me as a person I did not realize other people felt the same way as I did. I do appreciate what they did for me, but I had no intentions of ever going back. I found a good doctor in Pittsburgh Pa Dr Srinivas Murali, at least I feel I have a doctor that cares.

                    Comment


                    • #11
                      Yesterday afternoon I spoke with Dr. Lameh Fananapazir here at the ACC meeting in Chicago. He said that he was taking an administrative position with the B'hia and that he would not be practicing medicine. He seemed rather unsure of the fact that he would be able to return to the NIH 2 times per year as stated in the letter that was sent out to the NIH patients. He said his new position was going to keep him very busy. He wishes the HCMA well and offered his support to our efforts.
                      For those of you who are past or present NIH patients you know this is going to mean a great deal of change in the manner you manage your HCM.
                      I suspect in the coming weeks and months we are going to see many new names here on the board, many will be former NIH patients. I know you will welcome them to our community with open arms and tons of support during what will undoubtably be a difficult time of transition.
                      Good day from Chicago...I am off to a day filled with HCM meetings!
                      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
                        must have been an interesting meeting! send me a private email.

                        Comment


                        • #13
                          Re: NIH to end HCM program

                          N.I.H. to close down the H.C.M. Clinic!! What tha. . .! Anyway, great work was done in the past by N.I.H. and I certainly hope funding will become available and with new management, the program will again offer the needed research we all hope for and depend upon. Hopefully, also, the new funding and management will offer a more rounded "humanistic" research clinic. Like other patients at N.I.H. I had some good experiences and some bad experiences. Anyway, there is life after N.I.H.
                          There are some very good doctors who, in some cases, have experienced training at the N.I.H. clinic. Specialist such as my Doctor has been succesfully treating me for over five years now. My HCM is managed as well as can under present knowledge. I have total faith in his experience and advice. He is in practice in Richmond, Virginia. Good luck to all.

                          Waye

                          Comment


                          • #14
                            Re: NIH to end HCM program

                            Originally posted by Wayne
                            N.I.H. to close down the H.C.M. Clinic!! What tha. . .! Anyway, great work was done in the past by N.I.H. and I certainly hope funding will become available and with new management, the program will again offer the needed research we all hope for and depend upon. Hopefully, also, the new funding and management will offer a more rounded "humanistic" research clinic. Like other patients at N.I.H. I had some good experiences and some bad experiences. Anyway, there is life after N.I.H.
                            There are some very good doctors who, in some cases, have experienced training at the N.I.H. clinic. Specialist such as my Doctor has been succesfully treating me for over five years now. My HCM is managed as well as can under present knowledge. I have total faith in his experience and advice. He is in practice in Richmond, Virginia. Good luck to all.

                            Waye
                            Wayne, I just entered as a newly diagnosed person. I am also in Richmond VA until I return to China in Sept. Who is your doc and why do you like and trust him?

                            Laoshur (Chinese for teacher) Rhoda

                            Comment

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