JJAMD’S RETROSPECTIVE ON THE “TMJ YEAR” OF 2002

2002 WAS A YEAR OF GENUINE PROGRESS in very small increments:

WASHINGTON IS MORE SERIOUS ABOUT DOING TMJ RESEARCH AND TMJ REGISTRIES.

This was evident in our Spring visit, which lasted ten days and covered multiple issues and activities with multiple NIH agencies and a visit to the Hill with other Patient Advocacy organizations. The most hopeful sign of all, is the obvious commitment, determination, and capability of the new NIDCR Director, Dr. Lawrence Tabak, and his “TMJ designate” Dr. Norman Braveman, to advance the status of TMJ research and to implement a well-funded “Natural History [i.e. birth-to-death] TMJ Registry” which will

begin to track patients in the general [non- implant] TMJ population in a comprehensive body-wide assessment. This follows the many years JJAMD has campaigned for such a registry.

ANOTHER HOPEFUL SIGN DURING OUR VISIT WAS THE COOPERATION IN TMJ RESEARCH AMONG SEVERAL NIH AGENCIES led by NIDCR, and including Neurological & Stroke; Nursing; Arthritis and Musculoskeletal and Skin Disease; Complementary and Alternative Medicine; Allergy and Infectious Disease; Heart, Lung and Blood; and the Office of research on Women’s Health. The group, called Temporomandibular Joint Disorders Interagency Working Group [TMJDIWG] [the JOINT in the title being inserted by NIDCR as a result of our intervention] was formed in response to the House and Senate Appropriations Committees expressing specific interest in TMJ research. The meeting of TMJDIWG we attended demonstrated real interest among several of the agencies present, some of whom made presentations on research being done currently or planned for the future.

INCLUDED IN THE WASHINGTON ACTIVITIES WAS AN “NIDCR PATIENTS ADVOCACY FORUM” attended by a number of groups involved with advocating for oral health and related disorders. The forum provides an opportunity to “network” with other similar agencies, and to exchange views and ideas.

WE ALSO VISITED “THE HILL.” We were given assignments to meet with specific legislators and legislative aides to advocate for increased appropriations as “Friends of NIDCR.”

IN OUR MEETINGSWITH NIDCR OFFICIALS we continued to plug away at trying to get NIDCR to launch a broad public program of “AWARENESS” and prevention.

ANOTHER NIDCR SPONSORED ACTIVITY WAS THE “SECOND SCIENTIFIC MEETING OF THE TMJ ASSOCIATION.” [TMJA]. The meetings extended over two days and included presentations by researchers in a wide ranging group of topics involved mainly with basic scientific research in pain, arthritis, and allied subjects. Some of the medical scientists indicated that they were unaware of the implications of their research on the Temporomandibular Joints as opposed to other joints in the body, until they were made aware of such connection at this conference, by intermingling with TMJ practitioners and TMJ patients, and by hearing testimony from TMJ advocates and patients. Others working in the field of arthritic joints noted that they had never included the Jaw Joints within their research paradigms--another reason for our constant campaign of “AWARENESS.”

THE SCIENCE OF ALTERNATIVE MEDICINE [a.k.a. Complementary and Alternative Medicine ..CAM] took off in 2002. Newsweek December 2, 2002 featured CAM in their cover story. “Nearly half of all U.S. adults now go outside the health system for some of their care. We make more visits to nonconventional healers [some 600 million a year] than we do to M.D.s, and we spend more of our own money for the privilege - about 30 billion a year by recent estimates” the article states. In addition the NIH office of CAM has announced an increasing number of studies including at least one directly involving TMJ patients. Why is JJAMD not surprised by this turn of events? Because we have been observing for years that TMJ patients turn to CAM in increasing numbers because of their dissatisfaction with conventional medical treatments such as powerful mind-numbing drugs and psychological intervention. Yet, the health insurance industry rarely reimburses such treatments for TMJ patients, who are, in effect, taxed twice - once by paying health insurance premiums for services not received, and twice by paying out-of-pocket for alternative therapies.

JJAMD’s FOUNDERS HAD A PRIVILEGED MEETING WITH THE DEAN OF HARVARD MEDICAL SCHOOL IN 2002. This turned out to be a difficult meeting when it should have been a reasoned and informed discussion about why Medical Education skips right over the Jaw Joints and related disorders. The result is frustration for the millions of TMJ patients who go to their primary care physicians, orthopedic physicians, or rheumatologists to seek care. Offered an opportunity to meet with the Dean as a result of Milton’s position as a visiting overseer of Harvard Medical and Dental Schools, the Deans first reaction was consistent with physicians generally who find the subject of TMJ too difficult to deal with. Renée’s display of concern , however, made an impact, as we subsequently received a letter from him acknowledging ”the challenges you presented about the medical treatment of temporomandibular joint dysfunction [TMJ]. He referred the matter to the Dean of Education who wrote us that in connection with certain re-evaluation of medical teachings - we will keep TMJ in mind as a paradigmatic syndrome that raises important conceptual issues regarding the mechanisms of chronic pain and the need for a multidisciplinary approach to the care of the patient." A recent article in the Boston Globe reported that Harvard Medical School in undergoing a major revision in curricula and teaching techniques. We only hope that future Harvard trained physicians will do a better job with TMJ patients than the current physician community.

In June, THE UNITED STATE PATENT AND TRADEMARK OFFICE issued a Trademark to JJAMD for “JAW JOINTS - TMJ AWARENESS MONTH”® Proclaimed to the Congress by U.S. Representative Barney Frank and published in the Congressional Record, each month of November bears this designation. The trademark will insure that no one uses the designation for purposes unintended, nor can shorten or change the mark [i.e. TMD Awareness Month, etc.]. The extensive legal work required for the multiple year effort was provided pro bono by Goodwin Procter LLP of Boston. We are indebted to them for the service they have provided the public.

TEMPOROMANDIBULAR JOINT DISORDERS : TMJ AND HEADACHE IN CHILDREN - CLINICAL INDICATIONS AND OBSERVATIONS. Held at Faulkner Hospital in November this seminar, sponsored and developed by JJAMD, was a “standing room only” successful event. Part of the effort to promote “Jaw Joints - TMJ Awareness Month” the audience consisted of a large number of Physical Therapists, Nurses, Dentists and other care givers. Although substantial promotion was targeted to Pediatricians, few showed up, again demonstrating the lack of physician interest in the subject.

THIS WAS THE FIRST FULL YEAR FOR BLUE CROSS BLUE SHIELD OF MASSACHUSETTS COVERAGE FOR TMJ. As JJAMD announced in April 2001, this is the first in the country broad coverage for TMJ under medical health policies for both managed care and indemnity contracts. We worked long and hard with the Dental Director to implement this program. While claims are being tightly managed under designated procedure codes and with regard to the providers qualifications, it does represent the first ray of light in an otherwise dismal health insurance dilemma for TMJ patients. We wish we could say that this model program has been picked up by other health insurers. We do not know of any, but we will continue to spread the word.

APPRECIATION RECEIVED FROM MANY SOURCES ARE THE ONLY REMUNERATION FOR THE WORK WE DO. During the year we received a thorough recap of NIDCR activities with regard to TMJ and warm congratulation from Dr. Tabak and Braveman for the work we have been doing to advocate for such successful progress. At the end of the year, we received the following e-mail from a dear Colleague of Milton and Renée a prominent physician who had once served as deputy director of NIH and a trustee of the Arthritis Foundation:

“Dear Milton and Renée. May this New Year be most propitious for you both. I have been meaning to congratulate you for the results of your untiring work for the recognition of TMJ during this past year. This has been marked by the issuance by NIDCR of an RFA “Pathobiology of Temporomandibular Joint Disorders” 9/02 and the recent announcement of the intention to fund an “INTERNATIONAL PATIENT REGISTRY AND REPOSITORY FOR TEMPOROMANDIBULAR MUSCLE AND JOINT DISORDERS - (TMJDs) NATURAL HISTORY.” Your many years of hard work and persistence is indeed paying off. Kindest personal regards and may the future be as bright and productive.”

Finally, while we have long since abandoned the idea of general fundraising, each year we receive a donation from a Wall Street colleague of Milton’s other life who wrote to Renée and Milton. Please accept this contribution to celebrate your commitment. The world needs more of you – don’t stop.”

Please watch this site for further information on 2002 and the prospects for 2003