Testimony to the Blue Ribbon Panel on Envisioning the Future of the NIDR Intramural Research Program
Presented by the TMJ Association, Milwaukee, WI
January 27, 1993

Good morning.

On behalf of the TMJ Association and all people suffering from temporomandibular disorders (TMD), I thank you for providing this opportunity to speak with you.

I would like to begin by saying that I am not a scientist. I am co-founder of the TMJ Association, an organization established in 1986 in Milwaukee, Wisconsin, for the purpose of promoting awareness of this disorder among the public and professionals. We have spent the past seven years listening to the experiences of people afflicted with this medical malady and the professionals involved in their treatment. Permit me to share some of what we have learned.

Conservatively speaking, each year approximately 20 percent of the population, or 52 million people, seek treatment for this disorder. Women comprise 80 to 90 percent of that number, or 43 million. In the United States, 32 billion dollars is spent on treatment of craniofacial pain annually. According to the American Dental Association (ADA), the expensive instrumentation used to aid in the diagnosis and treatment of TMD lacks well-designed scientific clinical studies upon which claims of success are based, and the clinical practice patterns show further that a wide range of TMD treatment modalities are without scientific substantiation. The lack of hard science and the financial rewards of multi-modality treatment practices have no doubt contributed to what Dr. Harold Perry sees as a greater proportion of iatrogenic problems resulting from misdiagnosis and mistreatment. The absence of science has allowed these practices to continue, and the lack of basic research in the TMD area has permitted what one researcher calls "the Great American Medical Disaster" -- temporomandibular joint implants. Unfortunately, we may have only seen the tip of the iceberg in assessing the physical, psychological, and financial damage these people suffer.

How has the National Institute of Dental Research (NIDR) responded to this health care need? It is obvious that, over the years, this disorder has been a low priority in interest and funding at NIDR. In 1992, only 2 percent of the budget was directed toward TMD. The majority of the funding has been to study the psychosocial ramifications of orofacial pain to the neglect of the basic science wherein most certainly should lie the pathophysiological reason for temporomandibular joint problems. It is horrifying that, in this day of sophisticated science, professionals can see the pathology of an arthritic joint, the resorption of cranial and condylar bone, giant cell reaction, evidence of material site debris migrating to the brain, and imply that if only these people had a better attitude their pain would go away. This is dangerous medicine due to the absence of research. And the continued absence of research prohibits effective treatment solutions for all TMD patients.

It is clear that temporomandibular joint disorder is a complex, multi-faceted problem demanding the expertise of several scientific disciplines. We envision the following institutes involved with TMD research: the National Institute of Arthritis and Musculo-skeletal and Skin Diseases (NIAMS), the National Institute of Allergy and Infectious Diseases (NIAID), the National Institute of Dental Research (NIDR), and the National Institute of Mental Health (NIMH). Each has expertise in some component of the TMD puzzle and we will illustrate how they can collaborate. But first, let's get down to some basic information and ways research can be applied to the temporomandibular joint.

What we have is a joint and related muscles. It would seem that if we focus research in these two areas we could gain a fundamental understanding of "how the joint works and what is wrong with the afflicted tissues." Only then will we be on the way to developing treatment modalities based on science. According to other joint experts we have questioned, the following areas of study would greatly add to the meager knowledge we presently have of the jaw joint.

There is an absolute need to develop an understanding of the biomechanics of the TM joint. We need to know about the forces involved in the joint, the motion involved, and the effects of stress and strain upon the joint. We need research utilizing optimization schemes to estimate the contributions of various muscles, finite element modeling to estimate the local stresses and strains, photo-optical systems and strain gauge transducers to measure position and force. And we need to know the properties of regional TMJ tissues.

Biochemical and anatomical questions that need to be addressed include the following: What is the biochemical structure of bone and connective tissue of the TMJ? What is the metabolism of these tissues? The effect of fatigue on muscle function? What is degradation and repair of these tissues? Is there an immunological response of these tissues, e.g., synovium ? What happens to the blood supply and the nerve supply under mechanical disruption? These are just some of many questions begging for answers.

Why not develop an animal model? Why not look at normal versus abnormal joint biomechanics and biochemistry? Perhaps we should assay and culture tissue samples in normal, early and late diseased joints, as well as those with prostheses. How about comparative studies with other joints? Is it not essential that we have some comparison with other joint replacement materials and devices so we are not at risk of becoming victims once again?

NIAMS already has research protocols in place for all the areas of study just mentioned. They study all other joints and muscles in this manner. Why not the jaw joint?

The muscle disorder affiliated with TMD that affects approximately 80 percent of patients is Myofascial Pain Dysfunction (MPD) and is presumed to be regional fibromyalgia. NIAMS and NIAID have jurisdiction over this disorder. Therefore, it makes sense that the institutes that have or will develop protocols for investigating fibromyalgia will essentially be researching MPD. Furthermore, the high correlation between mitral valve prolapse, joint hyper flexibility, and TMD leads one to speculate that TMD is a connective tissue disorder. This falls into the realm of NIAMS. NIAID and NIAMS evaluate the immune and autoimmune processes in implant patients.

The NIDR could contribute resources of the epidemiology division to finally piece together the demographics of TMD. Both NIDR and NIAMS research pain management; therefore, these two institutes could collaborate in this area.

To this point, I have focused on the scientific aspect of dealing with the needs of TMD patients. Now I would like to address the devastation this disorder has wreaked on their lives. If the NIMH has no experience in helping victims of iatroepidemics, this would be a new area. These people are living with the psychological effects of the betrayal by the FDA in allowing lethal materials to be on the market, the fraud their doctors perpetrated by selling all sorts of treatment modalities -- many of which made them worse -- the medical community who refuses to take seriously the medical problems of non-surgical and surgical patients and the resulting financial devastation and family disruption, and the deplorable lack of science which has left the victims desperate and in "no-win" situations.

Enid Neidle, the ADA's Director of Scientific Affairs, has said that "our raging controversies… about the proper diagnosis and treatment of temporomandibular disorders reflect the failure of American dental schools to provide their students with any of the resources needed to develop what can only be described as a respect for science and an ability to learn from it." In light of the lack of scientific role models in the majority of dental schools, it is imperative that an attempt is made to recruit young investigators presently completing (graduate and post-graduate training in medical school and bioengineering departments of the best universities. This cannot and will not happen without priority funding.

Donna Shalala, in her confirmation hearings, indicated that names put on agencies may not be appropriate for the problems they are faced with. Perhaps, in this instance, this is true. The necessity is obvious that temporomandibular disorders be appropriately placed in several institutes. We hope that NIH looks upon researching this disorder as an opportunity and a challenge. The multi-institute program we are suggesting could serve as a model for future collaboration within the Institute. More importantly, however, it will allow the best state-of-the-art science to be applied to TMD.

Thank you.