The fact that I am writing this message in December of 2008 and can tell you that we are an organization that continues to be sought out by thousands for advice and information is pretty remarkable given the fact that a wide variety of large, wealthy organizations are foundering or have gone under. Furthermore we are planning new and innovative educational and patient service programs.
This success could not have happened without the support of hundreds of you who have contributed time and resources to MHAUS. I am referring to our members, our donors, our Board of Directors, hotline consultants and professional advisory consultants and office staff. Everyone has busy lives these days, and for individuals such as our hotline consultants and advisors to contribute their time and expertise to helping their peers and patients deal with MH and similar disorders is truly admirable. Not only do they share their expertise with those who are not as expert, but I can truly say that we learn from one another as well.
In addition to the ongoing activities of the organization, i.e., publication of The Communicator, an E-newsletter, updated print information and posting new information on our web site, answering hundreds of calls from patients, health care providers and others, and exhibiting at about 8 national medical meetings, there are several noteworthy events that have happened over the year. Here are a few:
In the spring of 2008, in response to the tragic death of Stephanie Kuleba from MH, Laura Landro, the medical writer of the Wall Street Journal wrote an article about outpatient anesthesia with an emphasis on MH. The article attracted a lot of attention and visits to our web site jumped significantly. Not only did the visits to the web site increase transiently, but the number of visits has continued at a high level. At present there are 2 million visits to our web site from all over the world! We truly are the place that people visit when they want insight about MH. We spend a lot of time making the web site easy to use and a ready source of the latest information on MH for patients and health care providers. Slide shows, print material and a message center are all part of the site. I should also mention that our subsidiary organization, the Neuroleptic Malignant Syndrome Information Service (NMSIS) also supports a web site that contains valuable information. We recently posted a slide show on the serotonin syndrome prepared by Dr. Patricia Rosebush.
We will soon be posting a video of an actual muscle biopsy test done for MH susceptibility along with a demonstration of the laboratory findings when the test is performed. The video was recorded at the biopsy center at Wake Forest University, Bowman Gray School of Medicine with the help of Dr. Joe Tobin, Professor and Chair of the Department of Anesthesiology, and MHAUS Board member.
The web is only one way communication takes place in the modern world. We entered the social networking scene this past year with a “cause” page on Facebook. There are currently over 300 members of our cause. Regular postings of relevant information with commentaries enables rapid communication of the latest news of interest to the MH susceptible and his/her family. Special thanks to Michael Wesolowski in our office who works hard to keep the material fresh and relevant.
Another highlight of the year was a symposium in conjunction with the Society of Pediatric Anesthesiologists on the relation of MH to muscle diseases. Dr. Ron Litman was the principal organizer of the meeting which featured expert speakers from the MH and the Neurology community. It was a packed house. At present, the presentations are under review in the editorial offices of Anesthesia and Analgesia, an international anesthesia journal. It is hoped that the symposium will be in print in a few months.
At the American Society of Anesthesiologists annual meeting there were about 20 abstracts related to MH and a variety of other presentations. Many derived from data from the North American MH Registry of MHAUS. Two important publications appeared in the journal Anesthesiology based on data from the Registry. One related to cardiac arrest and mortality from MH over the years, the other related to post operative MH. Speaking of the Registry, it will soon relocate from Children’s Hospital of Pittsburgh to Mercy Hospital in Pittsburgh. Both are part of the University of Pittsburgh Medical Center and the oversight of the Registry and its operations will continue as they are at present, with Dr Barbara Brandom as the Director. The reason for the move relates to the relocation of the Children’s Hospital to a new address and the need to reconfigure space in the new facility. Our sincere thanks to the administration of Mercy Hospital and Dr. Andy Herlich, Chairman of the Department of Anesthesia, for coming to our rescue.
In response to several deaths related to MH where the episode started outside a hospital surgical facility, MHAUS has been working with the Ambulatory Surgery Center Foundation to create a transfer of care protocol. It is critically important that all those caring for patients who sustain an MH crisis in an ambulatory or office-based surgery center are skilled in the management MH and have mechanisms in place to transfer the care of the patient to the hospital setting. This initiative is being headed by Dr. Marilyn Larach and our scientific officer, Sharon Dirksen. Anesthesiologists, Emergency Medicine physicians, CRNAs, SAMBA representation, and Emergency Medical Technicians are involved in the effort.
In September of 2007 a meeting was held to develop guidelines for preparation for, recognition and management of MH in an ambulatory surgery setting. The consensus document is now completed and will be made available to the public in the next few months.
We also sponsor programs to bring the MH experts to hospitals and meetings of health care professionals. Our Speakers Bureau has funded 13 such talks by experts in 2008. In addition, a patient/professional MH conference was held in Florida in September and was attended by over 100 people.Another important event in 2008 was the sale of Dantrium® (dantrolene) from Procter and Gamble Pharmaceutical to two companies, JHP Pharma in New Jersey and SPE Pharma in Holland. Procter and Gamble was the sole manufacturer and distributor of dantrolene since 1979 until 2007 when a generic version was introduced by US World Meds. Now, the Dantrium product will be made and distributed by JHP in the US and several other countries with SPE Pharma distributing the product in Europe. Fortunately, this transfer of ownership seems to have taken place seamlessly and the 30 year anniversary of the Dantrium Brand will occur in September of 2009.
Testing for MH susceptibility is in a state of rapid change. The muscle biopsy contracture test is now offered by only four centers in the US and two in Canada. One biopsy center, Thomas Jefferson in Philadelphia, ceased operations in the fall.Molecular genetic testing is offered commercially by two centers and one research center in the US. Although molecular genetic testing cannot replace the gold standard contracture test, for some situations, such as families where a mutation has been found, genetic testing can be extremely valuable and obviate the necessity for a biopsy. It is hoped that research in the genetics of MH by centers such as the one at Uniformed Services University in Bethesda, MD will increase the accuracy of genetic testing through ongoing research.
Those of us connected with MHAUS and NMSIS and the North American MH Registry are pleased to contribute to the health and well being of MH patients and their families and to help the clinicians who are caring for them. However, we realize that our work is far from over. We need to make sure that all personnel who care for MH susceptibles and their families are familiar with the syndrome and its implications so that patients are not given misleading information or denied care because of their MH status. We also know that there are many questions about who should undergo molecular genetic testing and how the test results should be interpreted. We also are aware that the growth of surgery in the ambulatory or office-based setting poses special problems for those who are MH susceptible or experience an MH crisis in such centers.
In my next blog I will begin to outline some of the new programs that we are planning for the coming year to meet those needs.
Special thanks to the MHAUS staff. Without them there would be no MHAUS: Dianne Daugherty, Executive Director, Gloria Artist, NicoleViera, Fay Kellogg, Michael Wesolowski and Sharon Dirksen, our Scientific Officer.