If I told you that people who have been living with urate crystal deposition disease for less than 10 years have twice the risk of death compared to the general population,¹ you’d want to know more, right? The disease’s prevalence and severity, which are only increasing, command our attention.

Around 9.2 million people in the United States. are living with this form of arthritis caused by the buildup of uric acid crystals in the body. The disease can cause acute inflammation of joints, hard, lumpy deposits in the skin, called tophi, and permanent joint damage.² About 100,000 Americans suffer from uncontrolled urate crystal deposition disease, meaning they experience ongoing pain and high uric acid levels even while taking medication.³ All-cause hospitalizations from this disease have increased more than 400% in the last 2 decades,² likely influenced by the fact that people who live with it are undertreated⁴ and more likely to have other serious health conditions such as obesity, hypertension, type 2 diabetes, chronic kidney disease, and cardiovascular disease.⁵

At this point, you might be thinking, “If urate crystal deposition disease is so serious, why haven’t I ever heard of it?” The reality is that you have, but you’ve likely never heard it discussed with this name. This disease, experienced by about 4% of the U.S. population, is known much more commonly as gout. Despite its severity, gout is often misdiagnosed or left untreated altogether. In fact, only 33% of people who live with gout report using urate-lowering therapies.⁶ Let’s examine why.

Stigma

Many people have heard of gout, but that name recognition isn’t helping in terms of understanding and treatment. It’s what people think they know aboutthe disease that results in and continues to fuel the false narrative that gout is the product of an unhealthy lifestyle. Further complicating matters is the fact that gout often appears as a punchline in popular culture—it’s depicted as humorous, embarrassing and a consequence of overindulgence in food and alcohol.⁷

This stereotype doesn’t just exist among the general public; even rheumatologists, despite their advanced training, often perceive gout as a lifestyle disease and consider patients more responsible for their condition than patients with rheumatoid arthritis. As a result, rheumatologists might believe people who live with gout are less likely to adhere to treatment protocols, and these physicians are, therefore, less likely to think patients would benefit from biological and/or pharmacological interventions.⁸ Even when they see patients experiencing gout symptoms, physicians may not dig deep enough to diagnose it because they might not consider it as serious as other ailments.

Provider and Patient Understanding

As an industry and a society, we must take gout more seriously. That effort begins with the physicians who diagnose and treat it. It’s essential to recognize that the prevailing stigma and absence of urgency around gout are simply the result of a lack of awareness. Doctors, naturally, are not willfully ignorant, but nearly all are overburdened with disease information and need educational materials along with the time to review them. Physicians should try to stay aware of their potential biases to limit how these beliefs may impact their clinical decision-making and understand how to overcome them to optimize diagnoses and clinical care for all their patients.⁹

Provider burnout plays a role as well; primary care physicians are already screening for a variety of conditions when they see patients, and gout is nowhere near the top of their list. Our primary care colleagues need guidance better to understand the severity of gout and uncontrolled gout so that they can appropriately screen for it and, when indicated, refer patients to specialists and ensure they receive the treatment they need.

The good news is that the technology to detect gout exists. The gold standard for diagnosing gout is still the detection of negatively birefringent monosodium urate crystals from the synovial fluid.¹⁰ Additionally, ultrasound has emerged somewhat recently as a promising modality for gout diagnosis.¹¹ Imaging technologies allow us to detect and quantify the overall urate burden and measure the body’s response to treatments in real time by showing urate depletion.

Gout isn’t a punchline. It’s an unfortunate daily reality for millions of people in our country, whether they realize it or not. It’s time to take this severe disease seriously. As a medical community, we need to prioritize provider education to increase screenings, specialist referrals and usage of treatments for gout and uncontrolled gout. We can detect, diagnose and diminish urate deposits in patients, but these technologies only work if we put them to use. And when we do that, when we commit ourselves to improve the quality of care we’re providing people who live with gout and uncontrolled gout, and we also work to improve their quality of life.

Brian LaMoreaux, MD, MS, is a rheumatologist and Senior Medical Director at Horizon Therapeutics.

References

1. ^{Vincent ZL, Gamble G, House M, et al. Predictors of mortality in people with recent-onset gout: a prospective observational study. J Rheumatol. 2017;44(3):368-373. doi: 10.3899/jrheum.160596}
2. ^{Kevin Yip MD. Patient information: Gout. JAMA. https://jamanetwork.com/journals/jama/fullarticle/2787544#:~:text=Gout%20affects%20approximately%209.2%20million,in%20men%20and%20older%20people. Published December 28, 2021.}
3. ^{What is gout? - Horizon Therapeutics. https://www.horizontherapeutics.com/PDFs/Uncontrolled-Gout-Facts.pdf. Published May 19, 2019.}
4. ^{Chen-Xu M;Yokose C;Rai SK;Pillinger MH;Choi HK; Contemporary prevalence of gout and hyperuricemia in the United States and decadal trends: The National Health and Nutrition Examination Survey, 2007-2016. Arthritis & rheumatology (Hoboken, N.J.). https://pubmed.ncbi.nlm.nih.gov/30618180/. Published April 15, 2019.}
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6. ^{Chen-Xu M, Yokose C, Rai SK, Pillinger MH, Choi HK. Contemporary prevalence of gout and hyperuricemia in the United States and decadal trends: The national health and nutrition examination survey, 2007-2016. Arthritis Rheumatol. 2019;71(6):991-999.}
7. ^{Derksen C, Murdoch R, Petrie KJ, Dalbeth N. "An apple pie a day does not keep the doctor away": Fictional depictions of gout in contemporary film and television. BMC rheumatology. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7812654/. Published January 18, 2021.}
8. ^{Lopez MA. Perception of gout as a lifestyle disease reinforces stigma. Rheumatology Advisor. https://www.rheumatologyadvisor.com/home/conference-highlights/eular-2022-coverage/perception-of-gout-as-a-lifestyle-disease-reinforces-stigma/. Published June 8, 2022. Accessed August 31, 2022.}
9. ^{Doherty TS, Carroll AE. Believing in Overcoming Cognitive Biases. IUPUI. https://scholarworks.iupui.edu/handle/1805/27596. Published September 1, 2020.}
10. ^{Park S; Lee LE; Kim H; Kim JE; Lee SJ; Yoon S; Shin S; Kang H; Park Y; Song JJ; Lee S; Detection of intracellular monosodium urate crystals in gout synovial fluid using optical diffraction tomography. Scientific reports. https://pubmed.ncbi.nlm.nih.gov/33976275/. Published May 11, 2021.}
11. ^{Thiele RG, Schlesinger N. Diagnosis of gout by ultrasound. OUP Academic. https://academic.oup.com/rheumatology/article/46/7/1116/2899456. Published April 27, 2007.}