EDWARD M, KENNEDY
MASSACHUSETTS
The
Honorable David M. Walker
Comptroller
General
Government
Accountability Office
441
G St., NW
Washington,
DC 20548
Dear
Mr. Walker,
I'm writing to request that you investigate whether the federal government is conducting all needed actions related to accountability, reliability, and integrity to alleviate the extraordinary suffering caused by Temporomandibular Joint Disorders (TMJD). TMJD, a devastating illness affecting millions of persons throughout the nation, causes a wide range of painful, debilitating and disabling symptoms. It is an acknowledged co-morbid component of other medically-recognized diseases and disorders such as Fibromyalgia, Chronic Fatigue Syndrome, Tinnitus, IBS, and others. However, for the TMJD patients, it is extremely difficult to find adequate support, diagnosis, treatment, and insurance benefits for the disorder. I'm troubled that this disorder is treated as if it were purely a dental health concern. TMJD falls uniquely between the cracks of medicine and dentistry. Because of the anatomical location of the jaw joints, the disorder has become consigned by default to dentists and oral surgeons. When patients exhibit signs and symptoms of TMJD, the diagnosis by medical doctors is often inaccurate, because of the absence of the jaw joint anatomy and attendant disorders from medical school curricula and clinical training. The complexity of TMJD reaches beyond the scope of dentistry, demanding the attention of specialists in the fields of neuromuscular, bone and joint, chronic immune and inflammatory, and endocrine diseases and disorders, as well as chronic pain, genetics, and biomedicine.
A
Technology Assessment Conference conducted in 1996 by the National Institute of
Dental and Craniofacial Research found significant problems with diagnostic
classifications, no consensus on cause or cure, and lack of data supporting the
superiority of any particular method for management of most TMJD problems.
Efficacy of most treatment approaches was unknown and there were no data to
support some commonly held beliefs. Additionally, it was concluded that
professional education was required to ensure proper and safe practice, and that
future advances in diagnosis and treatment of TMJD would occur as the result of
multidisciplinary collaborations among a number of fields involving basic and
applied science and practice. However, in the ten years since this conference,
there is little evidence of a coordinated movement to act on these findings.
In
July 1998, the Nlli convened the first session of the Temporomandibular Joint
Disorders Interagency Working Group, which meets once a year to facilitate
cooperation, communication, and collaboration among agencies and patient
advocacy organizations that conduct or support TMJD-related activities,
including the support of biomedical, behavioral, and pain research. Despite the
many body-wide medical problems and the overlapping co-morbid medical
conditions, the NIH continues to assign the leadership role to the National
Institute of Dental and Craniofacial Research. The Working Group plays a
facilitating role, but the funding of specific research initiatives falls within
the responsibility of the sponsoring entities, which seem reluctant to use their
agency funds for TMJD research. To date, a plan does not exist to fulfill the
intent of multi-agency, multi-disciplinary collaborative research to establish
the liaison necessary for success.
There
are other issues of concern. There is no universally accepted TMJD specialty or
board certification. Medical health insurance is virtually unavailable, because
of the misunderstandings and controversy surrounding this health condition. The
disorder is not covered by most dental plans that consider TMJD a medical
problem. If patients present medical doctors with symptoms of TMJD, the
diagnosis is often missed, and they are subjected to expensive and unnecessary
tests and procedures that impart a heavy financial burden on the insurers and
patients. Prevention and awareness programs have failed to produce the private
sector support and government support necessary to gain national traction.
Clearly, the federal government should do more to improve understanding of this
serious disorder, and help find better treatment and cures. As you evaluate the
federal response to TMJD, I would ask you to address the following specific
questions:
*
Which Institute at the NIH is best suited to have a co-leadership role, in
cooperation with the NIDCR, in conducting and supporting medically based
research on TMJD? A number of institutes and agencies at HHS are conducting
research on many of the comorbid or overlapping conditions found in TMJD. Yet
there are no specific studies of TMJD produced by agencies other than NIDCR,
which is the primary funding source for all TMJD research. Is there a need for
greater interagency funding of TMJD-research, as recommended by the Working
Group?
*
Does the fact that TMJD research primarily falls within a dentally-oriented
institute isolate the research from medical research conducted at other NIH
Institutes on conditions that may result TMJD? Would greater coordination of NIH
dental and medical research result in greater and more efficient use of
resources needed for scientific study of growth and development, dysfunction,
and disease progression in the TM Joints?
* Is there a greater need for research on the occurrence of TMJD in males and children?
*
Is the research being conducted by the NIDCR too narrow in scope to benefit the
majority of TMJ patients and to help the general public, particularly those at
risk? What research projects are under way that would advance the findings of
the 1996 Technology Assessment Conference and equitably benefit TMJD patients,
who presently do not benefit from research on their myriad health problems?'
Of
the funding provided over the last ten years by the NIDCR for TMJ research, it
appears that the majority has been devoted to studies of females with chronic
pain, and TMJ implants that affected a subset of 26,000 out of the millions of
other TMJD patients.
*
Would a registry of patients with TMJD significantly enhance the treatment and
diagnosis of this disorder?
*
In April 2003, an International Natural History TMJD Patient Registry was
introduced by NIDCR and then abruptly terminated in November 2003. Why was this
project terminated?
Would
a Patient Registry with comprehensive medical and dental data, heretofore not
investigated, involving the natural history of the disorder and its progression
in patients who have experienced or who are at risk for TMJD significantly
enhance scientific knowledge of this disorder and lead to future disease
prevention, diagnosis, treatment, and cure?
Would
a technology assessment panel have value in providing recommendations on the
best treatments for TMJD? Would the implementation of a new panel, designed to
provide physicians and the public with a responsible assessment of management
approaches to TMJD,
have
value in providing an overview of research, diagnosis, and treatments for TMJD
by assessing the technology advances or lack of progress in technology over the
past ten years since the original panel was convened?
* Are programs conducted by Nlli, HHS, and their other agencies adequate to make the public aware of the signs and symptoms of this serious disorder and where to go to for information and help?
I'm
concerned that TMJD continues to be a devastating and costly dilemma for the
American public. Your answers to the above questions will help tremendously to
shed urgently needed new light on the vision and encourage appropriate help for
all patients who suffer. I'm grateful for your attention to this important
issue. For the significant population of patients who already suffer from TMJD,
for the general public who seek advice and help and hope, for the many health
care and insurance communities who must deal with the issue, and for the many
practitioners who must deal with it as well, the answers cannot come soon
enough.
With great respect and appreciation,
Sincerely,
Edward M. Kennedy