On behalf of Members of The TMJ Association (TMJA) Board and the Scientific Advisory Board I wish you good health and happiness in 2013. What follows is a brief summary of how the TMJA has moved forward in 2012.
The prominence of pain. As you know from reading our publications, pain related to Temporomandibular Disorders (TMD) has been foremost among our activities for the past several years. This has been intentional, for the vast majority of TMD patients seek care because of pain. As you’ve also read, many times TMD pain does not exist alone, but is accompanied by other bodily pain conditions, which like TMD, predominantly affect women. This August, the National Institutes of Health held a follow-up meeting to our 2010 TMJ Association meeting focusing on these overlapping pain conditions to explore what we know and what research is needed to alleviate these multiple pains.
Joining forces. The TMJA is a member of the Chronic Pain Research Alliance and our mission is to see that research is directed to the conditions that overlap with TMD. We were pleased to be the catalyst for the August NIH meeting and the Senate HELP Committee Hearing on Pain in America: Exploring Challenges to Relief. Most recently, the TMJA along with the CFIDS Association of America and the National Vulvodynia Association submitted a proposal to the Sanofi’s Collaborate|Activate Innovation Challenge. We were honored to be among the top four finalists out of 280 organization submissions. Though we didn’t win we will use our experience and plan for future opportunities.
And the need for drugs. We took the opportunity to advocate for TMD treatments before the FDA. Within the Prescription Drug User Fee, there is a Patient-Focused Drug Development initiative to highlight 20 disease areas in need of therapies by featuring each one in an FDA-sponsored public meeting. We asked the FDA to add TMD to these conditions. These highlighted disease areas will have the attention of drug companies and the public forums will provide a platform calling attention to the need for research leading to the development of treatment options. To date, the FDA has not one drug labeled for use in TM Disorders and in the Device Division, only total joint devices. None of the pain management options currently available are labeled for TM Disorders. We hope to change that!
About TMJ devices. As a TMJ implant patient, this subject will always be one I passionately care about. In two months it will be two years since the FDA issued an order to the TMJ device manufacturers to submit protocols for conducting postmarket surveillance studies to obtain information about the safety of the devices and other measures. To date we have not been informed that any manufacturer has satisfied all requirements of this order. I’ve met with the FDA on this issue and have voiced our concern that the order has not been satisfied. This year we launched, TMJExchange, an on-line TMJ implant patient communication center which provides an avenue for patients to share experiences. Implant patients and those considering a device may join by contacting us at email@example.com.
The mystery of the jaw joint. The third Temporomandibular Joint Bioengineering Conference was held in September. Once again, the consensus was that, “unlike other joints in the body, we still know very little about the “TMJ’”. We hope to change that too. For several years we have asked the Directors of three NIH Institutes: Arthritis and Musculoskeletal and Skin Diseases (NIAMS), Biomedical Imaging and Bioengineering (NIBIB) and Dental and Craniofacial Research (NIDCR), to combine their intellectual and scientific resources toward determining what we know and what we need to know about the temporomandibular joint. Our efforts have paid off. The three Institutes will hold a TMJ workshop in May 2013. We will share details as we learn of them.
Adding bioengineering expertise. We have invited Anthony Ratcliffe, Ph.D., President and CEO of Synthasome, Inc. to join our Scientific Advisory Board. Dr. Ratcliffe’s work focuses on musculoskeletal disorders, tissue engineering, and product development, and he is highly respected in his field. I have known Dr. Ratcliffe since 1994 and in addition to respecting his scientific expertise I admire his passion for bringing safe and effective developments to the patient. I’ve asked Dr. Ratcliffe to take the lead in identifying the best and brightest bioengineers to add to our Scientific Advisory Board.
Listening to patients. This year has been one in which TMJA has been particularly heedful of patients’ needs, which we have expressed at a growing number of meetings and with organizations that have asked for our input. I remember it was about 15 years ago after I explained to my husband’s colleagues about TMD that he jokingly said, “The whole world will know about TMJ but only one person at a time!” That has certainly changed, and with every speaking invitation I accept my only goal is to let the audience know about TM Disorders, how they affect lives and what we need to solve the problem. So, at last we can say that we have attention being paid to TMJ patients’ pain and jaw joint dysfunction by policy makers in the highest quarters. We continue to have champions supporting the needs of the TMJ patients in the US House and Senate and we are cultivating more of them. We’ve also expanded our advocacy to the FDA Drug Division. We intend to stay on top of the items I’ve just told you about. They are in addition to what we do daily in helping those in need of support, information or contacts; keeping you informed about the latest science and happenings, and making and taking every opportunity to advance our mission.
YOU are the TMJA. You are the reason the TMJA exists and our goal is to eventually see the end of TM Disorders. When we look back over the years at our successes “doing” TMJ work has been gratifying. However, there is much more still to be done. When we look at the future and how we can bring the patients’ needs to fruition, “doing” TMJ work is daunting and challenging. But we are up to the challenge! With your continued moral support, volunteered help, expertise, and financial contributions, we will overcome these challenges and achieve our goal. I thank all the patients and their loved ones, scientists, clinicians, and everyone else who lends their time, effort and prestige for working with us and supporting us in so many ways.
Terrie Cowley, President & Co-Founder, The TMJ Association, Ltd.