I had another molar extracted on Monday. Nothing out of the ordinary for XLHers, but it got me to thinking about advances (or lack thereof) in dental care and access, especially for those of us who have more than our fair share of dental issues as a direct result of an underlying medical condition.
There are two actions that I believe could vastly improve the quality of life for the XLH community (and other communities where dental issues arise out of an underlying medical condition). One requires action by federal (and/or state) legislatures, and the other requires action by the health care community.
The first is to pass the Ensuring Lasting Smiles Act (ELSA) or something similar. This legislation would require health insurance policies (not the separate dental insurance policies) to cover “the full treatment of a congenital [dental] anomaly or birth defect until complete restoration of normal function or appearance.” Advocates have been trying to get the bill passed for five years, and support is growing, but progress keeps stalling out.
The second approach, which I think would ultimately be better, but is much more complicated, is to break down the barriers between dental care and other health care. For a variety of random historical reasons, the two medical professions have always been separate, but there’s n MEDICAL reason for that separation. In fact, as the Surgeon General’s Report on Oral Health Care in America concluded almost twenty-five years ago, “The past half century has seen the meaning of oral health evolve from a narrow focus on teeth and gingiva to the recognition that the mouth is the center of vital tissues and functions that are critical to total health and well-being across the life span. The mouth [is] a mirror of health or disease, as a sentinel or early warning system, [and] an accessible model for the study of other tissues and organs …”
So why on earth do we still have two separate medical systems instead of an integrated one? How is it that the mouth is apparently not part of our bodies, and therefore does not require health care? If the two systems were better integrated, we wouldn’t need separate medical and dental insurance, and there would likely be better collaboration between the two fields of medicine.
I’ve heard stories of patients who were first diagnosed with XLH by a dentist, who happened to be familiar with the condition. While I don’t think we should count on that happening on a regular basis, think about how much simpler it would be for everyone if a dentist was part of the overall health care team, instead of an outsider. In the past, the dentist who diagnosed the XLH would tell the patient, who would then have to tell the pediatrician, who then would have to refer the patient to a pediatric endocrinologist, with all the delays inherent in scheduling appointments.
And that’s assuming the clinician believes the patient, which we know doesn’t always happen. Plus, there’s a not-insignificant chance that a pediatrician wouldn’t believe the dentist any more than they believe patients, so there could be additional delays. There’s this weird disdain in the medical community sometimes, considering dentists as second-class doctors. Which of course is ironic, considering how much harder it is to get into dental school than medical school, and how much of the training overlaps. During the peak of the pandemic, when vaccines were being rationed and given only to first responders and medical providers, my dentist was told she and her staff couldn’t be vaccinated early because they weren’t medical providers! And that’s in a state known for truly state-of-the-art health care!
Combining the two medical fields just makes so much sense. It would be a big undertaking, admittedly, since there are whole industries (i.e., medical and dental schools, and insurance companies) who have a vested financial interest in the current bifurcated system. But the benefits for patients would be enormous, in terms of both comprehensive care and access. And it’s not just rare disorder patients who would benefit; common disorders are also connected to dental health. Great explainer in Scientific American, with some fascinating information on how dental health affects common disorders: “Why Isn’t Dental Health Care Considered Primary Care?” Highly recommend reading the article, but — spoiler alert! — the answer is, basically, habit and prejudice, which are extremely hard to overcome. (And thanks to the XLHer who alerted me to this article — you know who you are!)
Getting comprehensive care can be challenging, even for what’s seen as medical issues. Those of us with a whole-body, whole-life disorder like XLH need to consult multiple specialties to address all of our symptoms. The burden of assembling all those specialists (and getting them to talk to each other) is generally on the patient, although clinicians have begun to talk in terms of “health care teams,” which often should include dentists, except that they’re still not always viewed as providing health care. If we, as a society, truly believe in the concept of health care teams to provide comprehensive care, then it only makes sense to view dentists as an equal partner in that team.
And then there’s the issue of access. The Surgeon General’s report concluded almost twenty-five years ago that there were significant access issues for dental care: “Past discoveries have enabled Americans today to enjoy far better oral health than their forebears a century ago. But the evidence that not all Americans have achieved the same level of oral health and well-being stands as a major challenge, one that demands the best efforts of public and private agencies and individuals.”
Unfortunately, no such action has been undertaken. There was an update to the first Surgeon General’s report on oral health in 2022, called “Oral Health in America: Advances and Challenges,” which sought patient input, but doesn’t appear to have listened to it. And it offered no practical steps for achieving the changes (better collaboration and broader access to care) that it acknowledged were necessary.
My impression of the report is that it’s a lot of jargon, no real substance. And while there may have been technical advances in dental treatment, there haven’t been any of the systemic changes that need to happen. Even the call to action is so awash in platitudes without any actual path to implementation, that it’s meaningless. The conclusions boil down to essentially the same thing the first report said—we need to improve access and collaborate across the medical/dental divide. Without specific suggestions for implementation, like requiring health care insurers to cover at least some dental procedures, or advocating for integrating medical and dental school curricula and practices, nothing will change.
Breaking down this barrier ought to be high on the list of advocacy issues for all patient groups, since it’s relevant to all medical conditions, not just the ones like XLH where there’s a direct connection between our underlying genetic variant and the dental issues. Imagine what might happen if all the patient groups got together to advocate on this issue. Together, we are strong!
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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