1981 was a rather important year in my professional life. On July first I assumed the Chairmanship of Anesthesiology at Hahnemann University in Philadelphia. In October 1981 the first meeting of what would turn out to be the founding Board of MHAUS met in my unfinished offices at Hahnemann. It is hard to believe that thirty years have gone by which witnessed the evolution of a patient advocacy organization from an unknown entity to one where anyone seeking information and guidance on MH turns first.
Although the story of the founding of MHAUS has been told in various formats it is worth repeating at this auspicious moment.
MH was first described in a brief report in the journal, Lancet, in 1960 by Drs. Michael Denborough and Dr. Roger Lovell from Melbourne, Australia. Neither of them were anesthesiologists. They were asked to investigate the report of a near anesthetic death when a patient, Ron Evans, reported that members of his family died during or after being anesthetized. In fact Mr. Evans almost died had it not been for the quick thinking of Dr. Jim Villiers and the OR team. Mike Denborough in particular went on to describe many of the elements of MH that are still pertinent to this day.
MH only became a recognized entity much later in the decade. That is when Dr. Beverly Britt, Dr. Werner Kalow, and coworkers described many cases of MH in Canada and the upper Midwest of the US. All had the same features as the original report. Basically these individuals had no outward signs of any disorder, but when anesthetized with certain agents suddenly developed a rapid heart rate, muscle rigidity (often), high temperature, increased acidity in the blood, and evidence of muscle breakdown. 80% of the patients so affected died. At that time even if the signs were recognized there was no antidote for the syndrome. The OR team was baffled by the changes. What piqued scientists interest was that the signs of MH appeared in multiple generations within a family. In other words it was inherited and there was evidence of muscle destruction.
A few years later, an unfortunate young man, Dick Davidson, was injured after falling in an icy street in Chicago. He underwent anesthesia to repair of fracture, developed MH and died. His family was devastated and perplexed. His aunt, Suellen Gallamore, was so concerned that she underwent muscle biopsy testing for MH in my laboratory when I was at the Hospital of the University of Pennsylvania. She was MH susceptible. Subsequently others in her family were also found to be susceptible. But what really was frustrating was the inability to get answers to questions such as: Can I have an anesthetic? What is my risk of developing MH from any form of anesthesia? Are there special precautions I should take prior to anesthesia? How can I make sure my doctors know about MH and are prepared to treat the problem? Finding answers to these questions was an exercise in frustration and raised concerns that others who are MH susceptible, including her family members might very well have died from MH. Mrs. Gallamore therefore decided to do something about the lack of information concerning MH and made some phone calls. The first was to her uncle, Owen Davidson, Dick’s father who happened to be a major figure in many not for profit charities. She also found Bob Luckritz, whose daughter almost died from MH and George Massik, whose son died from the syndrome. She suggested that a patient advocacy organization was needed to help others navigate their care through this minefield called MH. At that time, little was written about MH and almost all of it in the scientific literature. She also asked me to help the fledgling organization get started as the scientific advisor. To this day, I remember that phone call. I readily agreed and arranged our first meeting in Philadelphia. Over the subsequent weeks the five of us hammered out the bylaws of the organization, applied to be registered as a not for profit organization in Virginia where Suellen lived, developed a logo and began to set out an ambitious agenda. The organization’s goal then as it is today, was to educate and alert patients and the medical community to the presentation and treatment of MH. By that time dantrolene had been approved as the only treatment for MH. The information was to be provided at low or no cost to make it available to all who needed it. It was our intent that MHAUS would not be dominated by professionals. Patients and the community should set the agenda.
As a first step, Suellen created a newsletter. That was one of her fortes. The Communicator was first published in 1982 and is still in active publication today. But we needed to get the word out and also raise money for distributing information. By that time, Proctor and Gamble Pharmaceuticals had purchased the company, Norwich Eaton Pharmaceuticals that made Dantrium. They too were seeking ways to make it known that the drug was efficacious and available. With unrestricted grants from Proctor we were underway. The Communicator was being published about four times per year now and being sent by mail to hospitals and many anesthesia providers (these were the days before the internet and the web). In order to further the dissemination of information we began to develop exhibits for the national anesthesia meeting of the American Society of Anesthesiologists. We were given space in Proctor and Gamble’s exhibit booth initially, but then graduated to scientific exhibits. Slowly but steadily additional donations arrived at the MHAUS office, now located in the basement of the Gallamore’s home in Connecticut and later in the basement of a church nearby. It was not unusual in those days for anesthesia providers at the national meeting to ask us “what is malignant hyperthermia?” We knew that there was a real need to get the information out in as many venues as possible. From previous meetings related to MH, I knew there were a cadre of anesthesiologists and non anesthesiologists interested in MH and also educating the medical profession to the dangers of MH. These individuals contributed their time and expertise to the organization without a second thought. Many still are involved. In particular, Gerry Gronert, Tom Nelson, Trey Flewellyn, Beverly Britt, Sheila Muldoon, Tom Blanck, John Ryan, Richard Kaplan, Carolyn Greenberg and many others contributed their expertise and support in word and deed at that time. In late 1981 the Board suggested that a hotline be created to assist those experiencing a case of MH since treatment had to be instituted rapidly and the practitioner often had to be guided through the complex management of MH. Accordingly we partnered with the Medic Alert Foundation to introduce a free, 24/7 life saving hotline. Callers would contact the Medic Alert Foundation and be given the names of those on call. Much later we partnered with the Poison Control Center in Upstate NY to have the certified nurses triage the calls and connect the caller directly to one of the three consultants on call (Last year the hotline was moved to Denver Hospital Center). I cannot give an accurate accounting of how many hotline calls have been handled since 1982, but based on only the calls patched through to a consultant, about 600 per year, about 16,000 callers have been assisted in diagnosing and treating MH or MH like syndromes. How many lives were saved is impossible to conjecture. The logistics of developing and distributing more and more information, disseminating the information and keeping the hotline going were becoming more and more demanding and so, the first employee of MHAUS was hired, Jo Nichols. Jo served the organization faithfully for over twenty years. Nevertheless it was Suellen, the hotline consultants and the Board members who donated their time to the success of MHAUS.
In order to expand the reach of the organization as the demand for information and assistance grew from the public as well as providers, we started to solicit funds from patients, anesthesiologists, nurse anesthetists, pharmaceutical companies and anyone else we could think of. This became more and more of a full time job. And so the staff grew as well.
Over the succeeding years, the Board grew and changes in office personnel took place. Suellen who served as the Board Chairman and unpaid executive director decided to move with her husband to the Midwest for professional reasons. We were then fortunate to identify a dynamic, experienced executive director, Dick Hillman who was perfect for the job because he was the brand manager for Dantrium at Norwich Eaton Pharmaceuticals and then P and G. Eventually the organization moved to Sherburne NY where Dick lived (down the road from Norwich) where it is locate to this day.
By the mid 1980s the diagnostic test for MH, the muscle biopsy contracture test had been introduced. However, the test lacked standardization in order to compare results from laboratory to laboratory. This was a real challenge since the test required harvesting a patient’s thigh muscle and testing it under a strict protocol for response to halothane (the commonly used anesthetic at the time) and to caffeine. The choice of muscle, concentration of drug, temperature of the test solution, the constitution of the test solution, differentiation from normal from abnormal response and many other factors needed to be defined. Accordingly MHAUS sponsored a series of standardization conferences in the late 1980s. Interestingly the European MH group was doing the same thing. There was much communication between the groups as there is to this day. Richard Ellis, Jane Halsall and Phil Hopkins from Leeds England often attended one or more of those meetings. The recording secretary for many of the conferences was Dr. Marilyn Larach, a pediatric anesthesiologist who while at Children’s Hospital of Philadelphia developed an interest in MH. Over the course of several conversations with me, Sheila Muldoon, David Larach, Dr. Julien Biebuyck and many of the biopsy center directors the concept of a Registry to record clinical presentations of MH and correlate them with the muscle biopsy contracture test was born. Marilyn, with the guidance of Gerry Gronert convinced the American Society of Anesthesiologists to support the creation of such a Registry. Unlike most registries, the MH Registry was designed to serve both the needs of patients as well as researchers. This preceded by many years the development of many other registries related to anesthesia such as the closed claims registry, the pediatric cardiac arrest registry and the anesthesia quality institute. The Registry’s first home was the Department of Anesthesiology Penn State Hershey. Dr. Biebuyck the chairman at the time was very supportive of the effort. In fact he worked with Dr. Gai Harrison from South Africa on MH in pigs. Marilyn served as the unpaid original director for many years. A few years later, Dr. Greg Allen joined the department and worked closely with Marilyn to refine the database and help in the process of analyzing the Registry data for publication including determining the sensitivity and specificity of the contracture test for diagnosing MH. Dr. Allen was the Registry’s second director. More recently a molecular genetic or DNA based test was introduced. This test is extremely specific and requires only a small amount of blood. Unfortunately, because of the complexity of the gene for MH, the ability to detect all MH susceptibles is limited. MHAUS is working with many investigators to improve the accuracy of genetic testing.
When the North American MH Registry was created it was an independent entity with its own Board and advisory council. However, funding for registries is always difficult. In addition personal and professional changes coincided such that the by the end of the decade of the 90s the Registry moved to Children’s Hospital of Pittsburgh and Dr. Barbara Brandom a pediatric anesthesiologist and investigator volunteered to lead the Registry. With the help of her chief, Peter Davis, their chairman, Peter Winter and later John Williams, Barbara accepted the position (unpaid) as the executive director of the Registry. When Children’s Hospital moved to a new location, the Registry also moved to Mercy Hospital, an affiliate of the University of Pittsburgh. The Chairman of the Department of Anesthesiology at Mercy, Dr. Andrew Herlich, worked hard to find space and support for the Registry. Hopefully the Registry will stay where it is for a long time to come.
Although I can go on and on about the history of MHAUS I will just add that through the miracle of the internet and World Wide Web, MHAUS’ reach was expanded dramatically. When the web became available in the 1990s we did not hesitate and created a web page and posted a large amount of our information. Now one of the challenges is to have our material translated into many languages and have Dantrium available worldwide.
In 2004, our primary financial supporter, Proctor and Gamble decided to sell its pharmaceutical division. We were worried and concerned. However, one of the companies that acquired the Dantrium brand, JHP Pharma assured us that they would do as much if not more than P and G had done. They have been true to their word and we thank them profusely.
Marking the thirtieth year of MHAUS, a new, more sophisticated and interactive web site was developed and introduced a few weeks ago. This would not have happened without the untiring efforts of the MHAUS staff, particularly Michael Wesolowski, Dianne Daugherty, Gloria Artist, Fay Kovack, Nicole Viera, and our scientific officer Dr. Sharon Dirksen. If you have not seen it, just go to www.mhaus.org.
Every year I am continually amazed by how this unusual disorder continues to challenge all of us. Unfortunately, death and disability from MH occur with some regularity in the US. As I predicted many years ago, the study of MH has led to insights into the function of normal muscle physiology and pharmacology and has helped to elucidate the relationship between molecular genetics and gene expression.
It has been my privilege to be associated with MHAUS since its founding in 1981 and as President since 1998. However the organization could never have achieved so much without the generous donation of expertise and financial support of scores of talented professionals, patients, families and industry.
I certainly have been remiss in not acknowledging so many who have helped in the creation of MHAUS and for that I apologize. Those of you who may read this and question what more there is to learn about MH and how you may help in reaching the goal of preventing all deaths and disability from MH, let me assure you that there is much more to accomplish before the battle is over.
For example next month an astounding report that will be published in Anesthesiology a widely read journal carefully and thoroughly documents what we have suspected for many years: death from MH triggered by factors other than anesthetic agents. I will discuss these new findings more extensively in next month’s blog.
Thank you all for your support in word and deed. Who knows what the next decades will bring, but I know we will strive to continue to make death from MH a “never event”.
Board members of MHAUS 1981- present
James W. McClintock, III
Andrew “Butch” Guest
Nancy J. Henshaw
Marcus C. Friedlander
John F. Larberg
Alfred B. Herbert, Jr.
Mary Elizabeth Kolb
Stephen Martin, Esq
C. Douglas Webb
Henry Rosenberg, MD,
Sheila Muldoon, MD
Stanley Caroff, MD
Dale Ann Micalizzi
Executive Directors of MHAUS 1981- present