For over three decades, Jonna Tallant has been grappling with relentless pain caused by temporomandibular joint disorders, known as TMJ or TMD. Despite spending a small fortune on treatment, she’s still in agony, barely able to open her mouth enough to squeeze in a toothbrush.
The Burden of TMJ Disorders
Affecting up to 33 million Americans, TMJ disorders cause pain and stiffness in the face and jaw. Women are two to nine times more likely to suffer from these disorders than men. The symptoms can range from minor discomfort to disabling pain that hinders daily activities like eating, working, talking, or even sleeping.
Despite the prevalence of TMJ disorders, treatment options are often not covered by medical or dental insurance. This leaves patients like Tallant bearing out-of-pocket costs that can range from a few hundred dollars to tens of thousands of dollars.
The “Medical-Dental Divide”
The National Academies of Science, Engineering, and Medicine refer to the gap in TMJ disorder insurance coverage as the “medical-dental divide“. This divide often forces patients to pay high costs for treatment while receiving inadequate care.
Terrie Cowley, a longtime TMJ patient who leads the TMJ Association, an advocacy group, has spoken with patients who refinanced their homes and cashed out retirement accounts to afford the out-of-pocket costs for their care.
The Dangers of Inadequate Care
Unfortunately, the problems with TMJ care in the United States extend beyond insurance woes. TMJ disorders have been widely misunderstood by many dentists, leading to ineffective care and futile surgeries that do more harm than good.
While the promising new specialty of orofacial pain has tried to rectify this problem, these specialists are few and rarely covered by insurance. As a result, their services remain out of reach for many patients.
Patients with severe TMJ disorders, who have been in treatment for years, if not decades, often describe spending thousands of dollars out-of-pocket at every stage of their care. This is usually because treatment falls outside their medical and dental insurance coverage.
The High Cost of TMJ Treatment
One such patient is Kyra Wiedenkeller, a former manager in the music industry, who is now on disability due to her “unrelenting pain”. Wiedenkeller estimates she’s spent at least $100,000 out-of-pocket on TMJ treatment and provided medical documents showing she had been billed for at least that much.
“Every doctor I’ve seen has made me progressively worse,” Wiedenkeller said. “I paid an exorbitant amount of money. I wiped out my 401(k) for these treatments in hopes of getting better time and time again. And just get worse and worse. I feel like there is no end.”
Seeking a Solution
The comprehensive study by the National Academies highlighted the urgent need for a solution to this problem. The study found that TMJ patients are “often harmed” during “overly aggressive” treatment. This treatment often falls into a chasm between medical and dental insurance, leaving most bills to be paid out-of-pocket at costs of up to tens of thousands of dollars.
The study also noted that, when TMJ is covered by insurance, it tends to exclude “low-risk, effective treatments”. Instead, it covers “higher-risk” options, like jaw surgery. This leads to patients receiving “the care that is best reimbursed, rather than the care that is best”.
Currently, there are fewer than 300 certified orofacial pain specialists in the United States, according to a database maintained by the American Board of Orofacial Pain. At least 20 states have no certified specialists, and eight other states have only one or two.
Insurance coverage for this specialty care is patchy, poor, or nonexistent, according to six orofacial pain specialists interviewed. Most said the insurance industry had fallen behind on the evolving science of TMJ, missing a chance to help patients and cut costs.
“It’s a no-brainer,” said Jeffrey Okeson, dean of the University of Kentucky’s College of Dentistry. “If I was an insurance person, I’d want to supply $1,000 to a patient to do conservative treatment … instead of $15,000 or $30,000 for surgery. Think of the money that can be saved there.”
Until such changes occur, patients like Jonna Tallant and Kyra Wiedenkeller will continue to bear the burden of TMJ disorders — physically, emotionally, and financially.
