NIH TECHNOLOGY ASSESSMENT CONFERENCE ON TMJ WAS A HUGE SUCCESS FROM THE PATIENT'S PERSPECTIVE

SENATE APPROPRIATIONS BILL PROVIDES INCREASED FUNDING TO NIDR AND SPECIFIES "TMJ"

CHANGING THE GUARD AT NIDR

COMPREHENSIVE ORAL RESEARCH CENTER GRANT

JAW JOINTS-TMJ AWARENESS MONTH.

LIASON WITH MASSACHUSETTS DEPARTMENT OF PUBLIC HEALTH [MDPH] GOING WELL

BLUE CROSS BLUE SHIELD MASSACHUSETTS [BCBSMA]

Healthtouch® SYSTEM UTILIZES JJAMD INFORMATION NATIONALLY

NEW MUSCLE IDENTIFIED--IS PART OF THE TMJ PARADIGM--CAN THIS HELP YOUR CASE?

LONG-TERM INVESTMENTS WITH SLOW PAYBACK

DOW CORNING IMPLANT CLASS ACTION LAWSUIT FILING DEADLINE IS DECEMBER 16, 1996.

Included with this JJAMD TMJ UPDATE is the final report: National Institutes of Health Technology Assessment Conference Statement-Management of Temporomandibular Disorders. The NIH provided JJAMD with a faxed copy of the Conference Report with permission to reproduce it for distribution. The published report, we were informed, will not be ready for a few months. This Conference was held at the NIH Campus in Bethesda from April 29 to May 1. It developed into a "really big show" with over 1100 participants in attendance. We left for Bethesda with heavy hearts, as we thought, "this will be just another futile TMJ conference." Because it was excellent, we returned elated and hopeful. The Panel membership was kept "secret" until just before the Conference began. It included a distinguished and diverse membership from the public health, human services, medical, and dental communities, who are researchers, academics, and clinicians. Eight of the fifteen Panelists were women. None of the Panelists was previously actively engaged in the TMJ field on any level, so it was deemed by NIH to be clear of any conflicts or biases. The results certainly indicated that this was the case. The Moderator, Dr. Judith E. N. Albino, facilitated this large diverse group of Panelists, Presenters, and huge audience with such dignity, that it was almost a pleasure to hear TMJ discussed. Investigators and practitioners working in areas relevant to the strictly formulated five (5) assessment questions gave presentations. In addition, during open discussion periods, questions and statements were allowed from Conference attendees, as well as from the allowed 5-minute mini-presentations by patient and professional advocacy groups. Renée and Milton gave separate presentations: Renée's with the passionate urgency for help as a TMJ Patient and as an advocate for all TMJ Patients; Milton's with a quiet overview of what he heard from the presentations throughout the entire Conference and what their messages really meant for all TMJ patients and the future. It was sobering and effective to hold up a mirror to them, reflecting their perspectives. We were told that our presentations and our materials made an impact and made a difference to the Panel since it provided them insight into "The TMJ Dilemma" from the perspective of the millions of TMJ Patients. We were pleasantly surprised that one Presenter was a Medical Doctor from Boston. He is a liver specialist who is doing research on tissue regeneration, which may prove useful somewhere down-the-line in TMJ disc repair and functional surgery. The Presenters provided numerous "scientific" works on surgery, orthodontics, occlusion, psychosocial/behavior, etc. As the Conference Report shows, it apparently became abundantly clear to the Panel that there was little valid science being presented, but much more of the usual "subjective case experience" reporting.

From the perspective of the TMJ Patient, the panel report and recommendations are a RESOUNDING SUCCESS. Virtually everything JJAMD has been "preaching" since 1982 was validated by this independent and distinguished panel. At times, the proceedings and the panel report were almost like reading directly from our works. We were told that all of JJAMD's materials, including our independent research, were read and taken seriously. As the pioneer TMJ Advocacy Organization who insists that the perspective of the patients must be taken seriously and treated humanely, we feel validated.

1. Expert, independent, and impartial.

The Panel Report represents the first time in the history of TMJ that an independent, non-advocative, nonfederal panel of experts has studied the current state of the art of TMJ research and practice, and reported their expert independent opinion. Previous TMJ Conferences have been conducted and driven by organizations who have a vested interest and, understandably, by its very nature, cannot be impartial or objective.

The findings of the Panel are already being used to frame current and future TMJ research funding. Additionally, it is having an affect on TMJ practice. It has already provoked a dialogue between governmental, professional, patient advocacy, and other interested parties. We are seeing editorials and letters from professionals both in praise and critical of the Panel's findings. The Senate Appropriations Committee [SAC] Report on NIDR FY 1997 funding [included with this UPDATE] is an example of the interest by Government. It clearly categorizes TMJ research as a top priority for NIDR and refers to the Panel's Report as a focus for future short and Long-Term TMJ research.

Of great importance, the Panel puts into an appropriate perspective the issue of "psychosocial behavior." It states: "Patients with persistent TMD problems may suffer psychologically and socially because of pain and dysfunction. Failed treatments and recurrent pain episodes contribute to life stresses with a pattern of frustration, hopelessness, and even depression. The life stress associated with persistent pain and dysfunction related to TMJ has not been adequately understood from the patient's perspective or from the perspective of impact on social functioning." It was implicit that the psychosocial affect on TMJ Patients tracks the Medical Profile of all people who are caught in a chronic health situation with compromised hope for wellness. Chronic illness imposes a psychosocial component as a secondary consequence, as opposed to a primary etiology.

There must be a separation of the Chronic Pain factors, e.g. Myofascial Pain, from the TMJ Joint dysfunction factors. Chronic pain is largely generic and is present in many other diseases and disorders. NIDR's "Long Range Research Plan for the Nineties," p. 130, September 1990, classifies TMD under "Chronic Pain" for research priority. This suggested that TMJ is analogous with Chronic Pain and linked it with Psychosocial Behavior. Therefore, this tended to label TMJ patients as "Chronic Pain Patients with a Psychosocial Etiology" first, and as patients presenting with a medical joint disorder somewhere down the line. To focus this label on TMJ Patients is tantamount to writing them off as if they were terminal cancer patients who have no hope of a cure. We believe this is not the case with TMJ patients. JJAMD believes this unfortunate designation has penalized the TMJ patients. It has resulted in them being inappropriately perceived, diagnosed, and treated. It has furthermore resulted in their being considered "unworthy" of health insurance and other entitlements, which has diminished the quality of life at home, work, and socially.

5. The Panel Says the Use of the Term "TMD" Has Become Emotionally Laden and Contentious The Panel Report states: "When sufficient data are available a multi-disciplinary classification system based on measurable criteria should be developed as the first step in a rational approach to developing diagnostic protocols and appropriate treatment modalities. This should lead to a labeling of "subtypes" that could permit the elimination of the term TMD, which has become emotionally laden and contentious."

The term "TMD" was created and adopted by the ADA in 1982. It includes in its definition, psychological, behavioral and social factors, which leads to the use of the term "psychosocial behavior." "Psychosocial Behavior" is used to describe TMJ patients who present with chronic pain and dysfunction. We are often questioned as to our vociferous objection to the use of the term "TMD" when, we are told, it is only "semantics." We believe that the use of the term "TMD" is most reprehensible when it serves as a proxy for "Psychosocial Behavior". It is pejorative, sexist, and demeaning to the TMJ patient, the majority of whom presenting at this time are women. Such psychosocial factors, as are encompassed in the TMD acronym, are present in virtually any chronic pain condition. If the patient is suffering from chronic lower back pain or arthritic joint pain, she is not categorized as "Psychosocial." Why, therefore, do TMJ patients have to bear the label "psychosocial pain patients" on their chests as if it were the Scarlet "A"? Why do dentists need to be retrained as practicing psychologists in order to treat TMJ Patients? At the Conference, some outspoken Dentists remarked that they thought they were taught Dentistry in Dental School but were now being told that they must practice Psychology.

JJAMD will never use the "emotionally charged" term "TMD" and we now know that our insistence has taken hold. We have demonstrated that it is an inappropriate "garbage pail" designation which has obfuscated the importance of and the focus on the Temporomandibular Joints. It can be used as a smokescreen" for failed treatments, which has added to the controversy. All the name changing has not cured one patient, nor has it fostered appropriate knowledge and research! In addition, we are committed to bringing "awareness of these two precious Jaw Joints and their relationship to the entire neuromuscular-vascular-skeletal system. All patients, the media, and most professionals now use the term "TMJ." So perhaps the pendulum is swinging back to the historical designation that everyone better understands. This Conference is the beginning of making order out of chaos. The Report insures that it will no longer be scientifically acceptable to push forward an agenda that is inappropriate to the total TMJ Profile and TMJ Dilemma.

We are pleased that the independent Panel has taken our materials very seriously. We have been told over and over again by patients and the professions that by our "telling-it-like-it-is" in simple layperson's terms we have contributed to the understanding of the entire TMJ Dilemma. Since there is no consensus on any facet of TMJ, our educational pamphlets with "Guidelines & Warnings" and "Self-help Tips" have contributed enormously towards understanding, and prevention--which is our mission and our passion. Our materials are now getting widespread distribution thanks to Healthtouch® kiosks, the Internet, and the Blue Cross and MDPH Prevention Centers. The truth about "Jaw Joints and the TMJ Dilemma" will help foster public education, hopefully lead to prevention of TMJ, and help provide more immediate and better diagnoses and treatments for existing TMJ patients.

TOP

Also included with this UPDATE is a page from the Senate Appropriations Committee [SAC] report regarding funding for the NIDR. SAC recommends over $190 million for NIDR funding in FY 1997; up from $182 million last year, or an increase of almost 5%. It is important to note that the very first priority appearing directly under the "mission" statement is a section on "Temporomandibular joint disorders [TMJ]." This section notes their continuing "strong interest in research on TMJ." It refers to the NIH Conference Report. JJAMD believes that the choice of the term TMJ rather than the garbage pail designation TMD is not by chance. It is a deliberate statement from the Congress that they want research to proceed on TMJ as a primary concern. JJAMD believes that the SAC is telling NIDR that it is time to get serious about the need for consensus on TMJ epidemiology, causes, prevention, early childhood intervention, the genetic predisposition to TMJ, acquired arm tic diseases, and all the other factors that constitute real research on TMJ. Psychosocial behavior, chronic pain, and other related areas are to be considered as adjuncts to the result of TMJ as opposed to a primary etiology. As such, they should be researched in cooperation with other Institutes such as Arthritis [NIAMS], Mental Health, etc. In fact, with the new NIDR Director's expertise and sensitivity to TMJ, some of the more recent NIDR research proposals reflect this new alliance concept. JJAMD believes that through the participation of patient advocacy groups and TMJ patients, NIDR and other NIH Institutes have now received a wake-up call to take TMJ seriously at last. There is an old axiom that says, "when communications break down, money talks".

TOP

Dr. Harold C. Slavkin is the new Director of NIDR. He came very close to becoming the Director of Forsyth Dental Center & Research Institute. Milton, as Chair of Forsyth Trustees, closely interacted with him over a period of time. We were personally very excited about his appointment, because he is a distinguished craniofacial expert and also seemed to be very sympathetic to the plight of TMJ patients and with our involvement as advocates. We will never know if TMJ might have already become a priority at Forsyth by now.

Now, as Director of NIDR, he has already shown sensitivity to the TMJ Patients and dilemma. He actually opened the NIH Conference, and helped set the tone for all to deal with TMJ humanely and realistically. Also, he authored the enclosed article in JADA, July 1996, V. 127, p. 1093, "A Lifetime in Motion: Temporomandibular Joints." Written in layperson's language, it echoes the findings of the NIH Conference, as well as our own writings. We spoke with him and told him how encouraged we are as advocates to know that he is trying to make a difference. We encourage you to write to him to thank him for his continued help. His address is:

NIH,

31 Center Dr.,

MSC 2290,

Bldg. 31, Rm. 2C39,

Bethesda, MD 20892-2290.

TOP

NIDR has invited applicants for planning grants for this multidisciplinary research program. When finally funded, the research will provide for a full range of research in oral, dental, and craniofacial disease and disorders. Included in the research objectives is a specific mention of integration of Temporomandibular Joint Disorders in the disease paradigm. The important objective states that it is "essential to maximize exemplary science and patient oriented opportunities...and to form alliances for widespread coordinated research." Our Board member and Principal Investigator on JJAMD's own research projects has been asked to consider collaborating with one of the researchers at an applicant university, who was one of the Lecturers at JJAMD's 1995 TMJ Conference. We have had preliminary discussions with them.

TOP

As has been the case in previous years, the month of November has been designated "Jaw Joints-TMJ Awareness Month," and a proclamation so stating has been signed by Governor William Weld. Senator Lois Pines is working on making this a national effort as well. It would be so much easier if this were an automatic on-going yearly designation. It does, however, provide for another photo-op with the very visible and popular Governor.

TOP

Our liaison with the MDPH is so rewarding and has surpassed our expectations for such immediate positive results. It has also influenced JJAMD's future focus. Dr. Michael Monopoli, DDS, MPH, is fulfilling JJAMD's primary mission to whit: "prevention of TMJ through awareness and education." Dr. Monopoli is devoting a lot of his personal energy to help fill this goal. He attended the NIH TMD Conference with us, in which he learned about "TMJ" in its entirety. We believe the proceedings and findings of this Conference influenced Dr. Monopoli on the importance of his involvement to help. He also is speaking to other professionals in both the Dental and Medical communities to learn, inform, and form alliances. This summer he has had a Tufts Dental School Graduate student assigned to him to research and write his findings based on his search for information and materials on prevention. When this paper is completed, we will make it available to you on request.

• MDPH Prevention Centers & School Programs on Prevention:

We have met with the Director of MDPH Prevention Centers and have begun to network with them with our materials. Dr. Monopoli has carried those effort two-steps forward. [1] Has written an article for their newsletter and [2] has written an article for inclusion in school newsletters so that nurses, teachers, and others can become aware of prevention of injuries to the children and first-line-of-defense screenings for immediate care or referral to appropriate sources for help. A copy of this article is included with this UPDATE.

• "Safe State" Program

This program is, to the best of our knowledge, the first in the nation in which a Department of Public Health has initiated a day long conference with a variety of other sponsoring agencies, to help in the prevention of injuries. Its description is: SAFE STATE is designed for people working in injury prevention, public safety, public health, health care, education, violence prevention, EMS, occupational safety, home care, children and elder services. From our inception in 1982, we have stated through our motto that "TMJ is largely preventable..." and that "...a lot of TMJ is caused by injury." Prevention is the best cure for all injuries and trauma, and is the kindest, least costly, and most humane human endeavor. It contributes to lessening needless pain and suffering, and lessens the high cost of health care. We are delighted that the MDPH is leading the way nationally to help prevent injuries. JJAMD will participate in this day long program with our materials, a talk, and networking.

TOP

BCBSMA has taken TMJ as a serious health issue. They, too, sent a Medical Policy representative to the NIH Conference. This has resulted in a new "TMJ Medical Policy" which is geared to the Medical Profession with more leeway for coverage to benefit the TMJ Patient. Our "Plain Talk Guide to TMJ; With Self-help Tips to Keep Your Jaw Joints Healthy," will be used as part of their health education, information, and prevention programs. We hope this will be a national effort. Dr. Evelyn Murphy, Executive Vice President of BCBSMA and former Lieutenant Governor, in her address to JJAMD's TMJ Conference, keynoted the need and opportunity for Public Health Policy to support TMJ research. She stated: "I believe we in Massachusetts can create the State public health policy on TMJ that serves as a national benchmark for access to care, holistic treatment, education, research, and information concerning TMJ.

TOP

JJAMD now has a list of all the Health touch kiosks in America, and can provide the public a source from which to access free TMJ and other health information, if they do not have computer access to the Internet or a medical/dental library. JJAMD has renewed its contract with Healthtouch®. It has been a very rewarding experience to be able to offer their service to a public starving for comprehensive layperson's information on complicated health disorders. Some of our kiosk information is available in Spanish, and all is available in large type. Throughout these many years, we have been saddened that so many TMJ patients couldn't afford to pay for information, and that we couldn't afford to provide so many Americans with free information. We are asked to keep our information current. If you feel you can contribute helpful information for inclusion in our next report to Healthtouch, please send us that information. NOTE ASTOUNDING STATISTIC! Since early 1995, 19,000 people have accessed JJAMD's TMJ information on Healthtouch. Now that Healthtouch® is "on-line" many more have been accessing the data, and many have been calling us directly. This is startling evidence of a public starving for help.

To access JJAMD information on Healthtouch® web-site, use: http://www.healthtouch.com and then click on TMJ and Jaw Joints

TOP

This publisher selects and abstracts many journal articles. Their May/June 1996 issue, Vol. 14, No.3, covers the subjects listed below that might be relevant to your case or for your interest. As you will see, there is a diverse array of articles on many facets of our multi-faceted health disorder, which literally makes it impossible for JJAMD to tell you all you may need to know to help your particular case. Also, since the field and the technology are so broad and ever growing, it is difficult for JJAMD to sort out or to report out to patients what might or might not help their specific case. You can follow up for more detailed information from this publisher, your doctor, or a library--designation #(ISSN 0885-9191). Keep in mind there is a new issue every two months.

Titles In This Issue:

Anatomy & physiology; newly described muscle;

Condylar fracture-No surgical treatinent-Masticatory muscle adaptation;

Differential diagnosis: Lime disease;

Multiple sclerosisTrigeminal neuralgia;

Otalgia;

Tophaceous pseudogout;

CPPD crystal deposition disease;

Tumoral Cacinosis; Drug therapy Morphine;

Electronic instrumentation/thermography;

Epidemiology & etiology: Dentofacial anomalies/Intemal derangement/Elongated styloid process/Forward head posture/Orthodontic treatment;

Internal derangement-Condyle position/Osteoarthritis-Nonsurgical treatment 30-year follow-up;

Pain-Chronic neurogenous pain-Preemptive analgesia;

Radiography & imaging Magnetic resonance angiographies-Evaluation of head & neck neoplasm’s;

Radiography & imaging MRI/Tomography/Tomography Osseous changes;

Surgery-Christensen prosthesis;

Surgery Complications-Costochondral graft Overgrowth.

Of particular significance is a "new" muscle that can be factored into diagnosis and treatment of TMJ. Identified as "Sphenomandibularis," researchers have concluded that it may contribute to incomplete resolution of Temporal Tendonitis. This muscle is written about in the enclosed JADA article by Dr. Slavkin and the May/June 1996 Anadem Publication, "TMJ UPDATE" both of which have wide circulation. So, share this information with your doctors, to see if it has any relevance to help your case.

TOP

Forsyth has provided JJAALD with headquarters space since 1983 in an atmosphere of science and discovery. Although they do no TMJ research, JJAMD has been able to interact with internationally respected scientists. We are included in its computerized database, and we have piqued their curiosity. Directors sit on our Board, and a Biostatistician has contributed greatly to JJAMD's independent research. When we were invited into Forsyth in 1983 by the then Director, to provide a needed community service, he sent us a letter, saying: "You can lead a researcher to water, but you can't make him drink it". He also said: but I promise you that one day TMJ will come into Forsyth." Now, 13 years later, although they sent a representative to the NIH Conference, and we have pleaded with them to attract a TMJ researcher as necessary to deal with a huge TMJ oral health problem, there still is no visible interest in TMJ. A new world-class craniofacial scientist is coming on board soon, and we will be discussing TMJ research with him. Hopefully, this could provide the first entry of TMJ research into this most distinguished of all oral research centers. Up to now we have been very sad and discouraged with this void.

The JJAMD sponsored study "Medical Claims Profiles of Subjects with TMJ Disorders" has provided impressive new information about the frequency and cost of access to health care for TMJ patients. JJAMD's PI has spent a lot of time writing and rewriting an article for publication in a Scientific Journal. The Scientific Journals have their "priorities" for publishing and, unfortunately, there is a resistance to patient oriented material. It is an affront to all TMJ patients, that some valuable valid data that has the potential to help "round out" missing links in the TMJ puzzle, is being denied. It should be remembered that the first study done in 1986 by Harvard Medical School in collaboration with 32 JJAMD Support Group members, was just recently published in a Medical journal, but after the research was considerably altered to fit the publisher’s criteria. We have apologies from the PI, and while we were happy to have it finally published, we believe the study was forced to be compromised, and therefore lost some of its importance.

Nothing comes easy for TMJ and for JJAMD. By now, we should have had our JJAMD TMJ Conference Proceedings available for distribution, but many of the Lecturers were slow in returning their speeches and then the transcriber kept us on her back burner. Now we have all of the transcriptions, but they are still in process of being edited.

Four years ago AF committed to publish a useful, helpful article on TMJ in their publication "Arthritis Today," as well as a fact sheet to be included with their other 132 arthritic disorders. They have failed to do so to date. Our Legal Board Member has pursued this matter for a long time, but his efforts failed and now he seems to have given up.

Rather than honoring this legal and ethical commitment by now, they have dug in their heels and have forthrightly told us that they have no current plan to do so. The AF continues to pose a disappointment to JJAMD and actually to all TMJ patients. They are also depriving arthritis patients, who have either Osteoarthritis and/or Rheumatoid arthritis in other joints in their bodies. They have a right to understand that there may be any connection with these two joints that happen to be called "TemporoMandibular Joints." Arthritis can affect these two jaw joints just as they do any or all other joints in these same bodies! It boggles our minds; it is wrong; it is sad; it is unethical; and it is time consuming. Whatever their reasoning, at this time we do not have the energy to "plead the Temporomandibular Joint Case" on our own. TMJ Patients and Arthritis-Patients must assume some responsibility to question the AF as to why they are unwillingly to help on any level to inform, educate, and to help prevent injury and disease to the jaw joints, and to help their readership to appreciate the important relationship of Jaw Joints to their other joints. Edmund Burke is oft quoted as saying: "All that is needed for the triumph of evil is for good men to sit back and do nothing." We believe that it is evil not to help when you should and could.

NIAMS was a cosponsor of the NIH Conference. We contacted Stephen Katz, MD, Ph.D., Director and received a very optimistic response from him. He indicated that NIAMS had participated in the planning. He stated that NIAMS interest in this area is multifaceted. "As the lead Federal Agency for the support of research on musculoskeletal disorders, the NIAMS is obviously interested in research opportunities that may provide new insights into these disorders. For that reason, we chose to become a cosponsor of this important Conference." He added "...NIAMS' further research will be based in part on the answer to the question of future directions for research and possible new collaborations and partnerships for pursuing these directions." JJAMD feels that the aggressive posture that NIDR Director Slavkin is pursuing will lead to such collaboration on TMJ research

TOP

If you are involved in or plan to file a claim as part of the class, you must file by December 16. Contact these sources for up-to-date information:

- Dow-Corning Settlement Line: 1-800-997-1700 Claims Facility-POB 7500, Midland, Michigan,

- Breast Implant Info Help Line: 1-800-651-7030