Renee’s Opening Remarks to the NIHTMJDIAWG Meeting on May 5 at the NIH Headquarters in Bethesda Maryland

 

 

 

Good Morning! 

 

The dictionary meaning for Advocacy is “championing a cause.” Advocacy is a beautiful word when it fulfills the intent to help with appropriate awareness towards a resolution of an issue previously unknown or unattended to.

All of us here today are Advocates in one way or another.  We all want to help in our own realm, to foster awareness, prevention, knowledge, education, and research to improve the health and lives of all Americans. Through effective and leading edge medical research. 

 

Today’s meeting is about a health dilemma that now—in the 21st Century--continues to be so unloved and so misunderstood that it borders on scandalous.   Temporomandibular Muscle and Joint Disorders [TMJD] continue to grow exponentially, despite a glut of research and a body of literature, which has tended to obfuscate, baffle, and fuel the controversy that continues to swirl around this disorder.  This is our perception:  “The Slippery Slope Roadmap of Perception, Diagnoses, and Treatments of TMJD Patients, and TMJD Research, is largely inappropriate, unsuccessful, and costly.”  Therefore, in its current status, all of your current and future efforts will be futile to resolve the dilemma and enhance science, if you do not deal with all of the realities of TMJD.

 

This Committee can make a positive difference, but you, acting as Advocates from a variety of Professional Institutes, Agencies, and Disciplines, have wisely decided to collaborate with the Patient Advocacy organizations to accomplish the same goal as the Patient Advocates.  You are uniquely in the position of authority, charged with the health and protection of the public, to do the right thing.  This should result in a more timely, humane, equitable, and productive course of action.  This meeting, which includes knowledgeable lecturers on the subject of TMJD, as it also relates to other overlapping co-morbid disorders—e.g. Fibromyalgia, Chronic Fatigue Syndrome, Tinnitus, IBS, and others, referred to by a Rheumatologist as Dysregulated Spectrum Syndrome “DSS”--is a major stepping stone in the right direction.  JJAMD thanks the NIHTMJDIWG for this foresightedness.

 

But, it must be remembered that TMJD is still the only disorder in the DSS spectrum that is not acknowledged, perceived, nor respected as a Legitimate Medical Clinical Entity.  Therefore, this must be the major focus of this Committee, if we truly are collaborative advocates to resolve The TMJ Dilemma and truly advance this serious health disorder into true science.

 

 

 

Surely we could bring appropriate awareness, education, and research, but in the absence of any universally accepted distinction, classification, diagnosis, treatment, and excellent data for excellent basic research, PREVENTION, became the paramount passionate pathway to fill the void until science would be able to catch up with practice.

 

Our thanks for this Committee who has the potential power to move the TMJD Dilemma further and faster along.  

 

Thanks for having the wisdom to collaborate with Patient Advocates and Patients.  Thanks for helping to put the JOINTS and JAWS back into the equation of definition.   Thanks for addressing stigma, which is a 2-way street; i.e. stigma of the patients as well as stigma of the health care providers.  

Thanks for acknowledging the co-morbidity of disorders such as Fibromyalgia, Chronic Fatigue Syndrome, Irritable Bowel Syndrome, and others that are now acknowledged as being related to TMJD. 

Thanks for inviting Medical Researchers to acknowledge and dignify the reality of Jaw Joints as part of their Medical paradigm.

Thanks for offering help and hope to this huge disenfranchised population who live in constant terror.

 

 

We now all live under the cloud of the Evil Advocacy of Terrorism of Osama Bin-Laden and others.

Unfortunately, to us there is an analogy for the TMJ Patients, because they live in a constant state of terror.  They are disenfranchised human beings, without even entitled to access their entitlements, dignity, or a decent quality of life, and it is life threatening to many.  We suggest that society can no longer tolerate terrorism of any kind, whether it is from foreign sources or from our own American society, as is the case for TMJ patients.

 

 

I am an iatrogenic TMJ Patient, who was created needlessly.  This led to become with Milton the nation’s pioneer TMJ advocacy organization in 1982.  We naively believed that by forming our organization that it would be easy to effect change, particularly since Milton was so well positioned to move the TMJ agenda. 

 

What followed were the many iterations of advocacy, as we hacked our away through a jungle of unknown territories.   There were public service announcements [PSA].  There were 8 years of personally facilitating TMJ Patient Support Groups.  We sponsored monthly free professional lectures to the public in professional settings.  But what we lacked were some of the basic necessities for sooner effective resolutions:

 

 

•  Participation by the TMJ Patient members to help their organization, nor the       willingness of all TMJ Patients and other TMJ Advocates to be visible in a national      grassroots movement

 

•  Participation by the Medical Profession and their Societies in coming on board to work     alongside the Dental Profession to help advocate appropriate help for their patients

 

•  Failure of Academia to include TMJ in their curricula

 

•  Lack of celebrity Spokesperson to help attract awareness

 

•  Dearth of excellent patient data and medical histories

 

•  Lack of a comprehensive Natural History TMJ Patient Registry

 

•  Resistance by health care community to promote national programs of awareness and     prevention

 

 

 

What is still needed, therefore is:

 

Medical Profession and their societies to work along side the Dental profession with more oversight and accountability by both disciplines.

 

Help legitimize the disorders to the Jaw Joints as a Medical Clinical Entity.

 

Write Insurance Codes, as it is their responsibility

 

Promote a National Health Promotion Programs to bring awareness and prevention

 

Promote a Natural History TMJD Registry, in tandem with a newly created comprehensive Patient History Databank, in order to help demystify, define, classify, advance appropriate diagnoses, treatments, research.  Since there is research done by other related and overlapping disorders, e.g. Fibro, CFS, etc., these instruments will help tease out the co-morbidity of these other disorders now linked with a TMJD component.

 

Collaborate in a National Awareness & Prevention Program, under the Congressional Proclamation House Resolution No. E-1899, dated September 3, 1997, proclaiming all future Novembers as “Jaw Joints – TMJ Awareness Month.” In order to help prevent even ONE more human being from needlessly falling victim to this misunderstood controversial disorder and its devastation on the physical, emotional, and financial well-being and lessen the burden on American society caused by the lack.

 

 

These are key points, coincidentally beginning with the letter “P”, which are essential to any Patient Advocacy program:

 

Passion

Persistence

Promotion of Prevention Programs

Proper Perception of Patients

Proper Perception of the TMJ Dilemma

Persuade Professionals to provide their academies, universities, hospitals, etc. with the awareness of the pervasiveness of TMJD and related disorders, so that they must become part of the solution

Partner with Medical Profession for clinical and research efforts

Participate in programs that screen for signs and symptoms

Partnership of the Medical and Dental Communities to benefit all current TMJD Patients and those yet to come

Perceive as a privilege to enhance excellent research

 

 

I should now like to introduce my husband, Milton.

 

 

I believe that Milton Glass is pre-eminently qualified and positioned to advocate for the TMJ Cause.  The many hats he simultaneously wore in 1982 as we embarked as America’s Pioneer Advocates. Some of the positions he has held over his long career include:

 

Senior Executive, Financial and Investor Relations for 42 years with Gillette Company [Oral B is a division of Gillette]. Retired.  Won the “Investor Relations” national award five consecutive years as “The Best of the Rest” in his field. 

 

Blue CrossBlueShield Massachusetts, 36 years, as Director and Chairman.  Active

 

The Forsyth Institute [formerly Forsyth Dental Center] Director and Chair 22 years. Active

 

Harvard Medical and Dental Board of Visiting Overseers

 

United Way of MA. Bay – 30 years

 

Northeastern University – Adjunct Professor of Finance; Wellness Committee

 

National Association of Corporate Treasurers, Director and Chairman

 

FEMA [Federal Emergency Management Association, Director of Wage & Price Controls, 24 years  “Q” clearance, which means “Unquestionable Loyalty”.

 

MDI Corp,  [an MRI company] Director

 

Boston Public Library, Examining Committee

 

International Business Center of New England, Director and Chair, 20 years

 

Participant in Tufts TMJ Clinic, MGH, Faulkner, Spaulding collaborative effort to deal with TMJ and related disorders with chronic pain.