The Jaw Joints & Allied
Musculo-Skeletal Disorders Foundation
Talk to the
Temporomandibular Joint & Muscle Disorder Interagency Group
AWARENESS,
PREVENTION
& PATIENT
RESEARCH DATA:
THE ROLE OF A TMJ
ADVOCACY ORGANIZATION
Scientific
TMJ research is still in its infancy. Your work is vital, and a critically
important contribution toward restoring dignity to a devastated patient
population.
It
is important that you are aware of the role of the Patient Advocacy
Organizations, since up to now:
• We have been the public face of an orphaned
disorder.
• We are the public voice of an
unmanaged, silent, disenfranchised patient population numbering in the millions
• We have been in the trenches
with these patients for 25 years
• We are a credible and valued
resource
• Thousands of patients have entrusted
us with their life stories, their medical histories, their signs, symptoms, and
co-morbid conditions.
• We add truth to this troubling
dilemma.
• We are the critical link to an
enormous reserve of excellent data without which excellent research cannot
flourish.
• We have had an impact on
insurance coverage for these stigmatized patients
• We initiated the declaration
of November as “Jaw Joints - TMJ Awareness Month,” which was introduced and
published in the Congressional Record in 1997 by Congressman Barney Frank.
If these are just a few things that an unfunded Patient Advocacy Organization can do, imagine what can be done if we received full participation of NIH, CDC, HHS, and other agencies. This is why we say that a “Call to Action” is needed for participation in broad-scale public Awareness and Prevention Programs that can have an immediate impact on the general public as is done for so many other health conditions.
While
we await proven science….your role in this equation….it falls upon us to
continue to:
•
Advocate for TMJ Disorders as a public health concern.
•
Focus on public awareness and prevention of TMJ Disorders.
•
Advocate for the necessity of integration between various types of health
professionals, and for greater understanding of possible connections between
TMJ and related or overlapping disorders.
•
Educate the public on the need for conservative non-invasive treatments until
science can catch with the sometimes bizarre treatments provided this vast
unfortunate population
•
And we must continue to campaign vigorously for multi-disciplinary research that
will engage the medical community to unlock the mysteries of TMJD?
We
have provided you with a glimpse into what TMJ advocacy organizations are
doing, and invite you to consider ways in which we may further our common
agenda. Additionally, we make the case
for the urgent need for NIH, CDC, HHS and other agencies to provide input into
broad-scale public Awareness and Prevention programs as critical to progress.
WHERE WE ARE NOW
In this very year, there remains
no general acceptance of the TM Joints as part of the Medical paradigm. Orthopedists avoid them, insurers reject
coverage for the often bizarre treatments, and medical schools, as we were told
personally by the dean of
The TAC Conference Sets
Priorities for the TMJ Community
In 1996, the NIH convened a Technology Assessment Conference on the Management of TMJD. Some of the conclusions of the distinguished panel were:
1. Consensus has not been developed across the practicing community regarding many issues, including which TMJ problems should be treated, and when and how they should be treated.
2. The efficacy of most treatment approaches for TMD is unknown, because most have not been adequately evaluated in long-term studies, and virtually none in randomized controlled group trials.
3. Future advances in diagnosis and treatment of TMD will occur as the result of multidisciplinary collaborations among a number of fields involving basic and applied science and practice.
4. Professional education is needed to ensure proper and safe practice in the treatment of TMD, especially with regard to pharmacological, surgical, and behavioral approaches. Moreover, if patients are to know where to seek help, and if insurance companies are to fully acknowledge the need for treatment of TMD, a consensus must be developed regarding the professional expertise needed to diagnose and treat these serious health problems.
Do we accept these challenges from the TAC panel, to promote consensus on TMJ disorders, to determine efficacy of treatment, to create multi-disciplinary collaborations, and to encourage professional education?
A TMJ advocacy organization can support these directives through public messages about the current state of understanding about TMJD, and through support of well-designed research. Our expertise is not in basic science research, nor clinical treatment trials. However, we are in touch with what countless patients have experienced in terms of multiple co-morbid conditions simultaneous with their TMJ disorders. The recognition of these overlapping and possibly related conditions has led us to advocate for a national TMJ registry, as a starting point for mutual understanding. Senator Kennedy who wrote to the directors of NIH and CDC recommending a patient registry be established supported our efforts.
The International TMJD Natural
History Patient Registry
With the help of scientists at Forsyth Institute, respected professionals, and a registry consultant, we drafted a proposed patient registry model to advance TMJ patient data collection. This model registry was designed to track patients through various treatment modalities and document patient histories for clues to causes. After campaigning for many years for the NIH to fund a registry, our dreams were realized last year when an RFA was published by NIDCR. Senator Kennedy, who wrote to the directors of NIH and CDC recommending a patient registry be established, supported our efforts.
A short time after the submission, we were informed by NIDCR that the reviewers had rejected all proposals because the registry was “premature.” This is in spite of the fact that TMJD research has been going on for two decades and millions of patients have received some form of treatment, often making their conditions worse.
Now, NIDCR has issued an RFA for
a longitudinal study. We hope that this new venture will not similarly be
labeled as “premature.”
Effectiveness of Awareness Campaigns.
In addition to supporting a
national registry, TMJ advocacy organizations have a pivotal role in public
awareness campaigns. Numerous examples
reveal the effectiveness of such campaigns for lesser-known disorders, including
Deep Venous Thrombosis. The American Public Health Association with HHS and CDC
recently convened 60 of the nation’s leading medical experts and patient
advocates in
As advocates, we are acutely aware that TMJ awareness programs have been absent from support by HHS, NIH, NIDCR, CDC, and the public health communities. Awareness programs such as those for Diabetes Awareness Month receive enthusiastic support and publicity and are usually announced by the Secretary himself. When we asked for support for “Jaw Joints – TMJ Awareness Month,” we were told that the Congressional Proclamation, published in the Congressional Record, was not sufficient for support…that an act of congress was necessary. In checking with a diabetes advocate organization, we were informed that a congressional enactment had not been required for HHS support to National Diabetes Month events. Congressman Frank’s office reconfirmed that enactments are no longer being done.
A CALL TO ACTION
At a time with NIH funding priorities are focused on the molecular realm, advocacy for patient awareness, prevention, and the need for patient research data are more vital than ever.
1. A conference should be planned and held using the model of the recently convened DVT conference just mentioned which gathers top-level people to devise Awareness and Prevention programs. The success of that model is clearly evident from the incessant TV messages broadcast. The same must now be done for TMJD.
2. It is imperative that a high quality TMJD Awareness and Prevention Program be designed and implemented as soon a possible, coordinated by NIDCR, with the guidance of multiple agencies and media consultants. A target date for completion and implementation should be set now. Results of the conference would be highlighted in consumer messaging.
3. A “call to action conference” designed around and with TMJ patient activists and advocacy organizations, should be convened by NIDCR so that a loud and strong message is sent directly from the patients to the NIH, HHS and CDC among other agencies.
4. Since TMJDIWG has been formed to deal with related or overlapping disorders to TMJD, this working group should continue to be used as a resource for advocating for multiple agency research into this troubling group of disorders and disease. Doing so fulfills the directives of the 1996 TAC Conference: “Future advances in diagnosis and treatment of TMD will occur as the result of multidisciplinary collaborations among a number of fields involving basic and applied science and practice.”
5. Funding should be aggressively pursued, making it possible to develop interagency research projects specifically for TMJD and related disorders, instead of having TMJD as an incidental part of larger projects in other institutes.
CONCLUSION
To the TMJDIAWG we say that it is essential that interagency medical research be encouraged and expanded if we are to unlock and unblock what we always refer to as “The TMJ Dilemma” that is so poignantly expressed to us by TMJ patients. Patient advocacy organizations and governmental agencies will cooperate in this effort, which must include increased funding for interagency research. Allied with these research efforts must be a specific and hard-hitting Awareness and Prevention campaign, as outlined in our “Call To Action.” Finally, it is the patient and future patients who must be considered first and foremost. If the present situation continues it will continue to consign countless Americans to a life of despair and agony.