Are All Gout Patients Getting the Treatment They Need?
More than 9.2 million Americans live with gout, but only 10 percent of people with gout are getting the ongoing treatment they need. The lack of proper treatment is particularly acute among Black patients, who have a 25 percent higher prevalence of the disease but are much less likely to receive the uric acid-lowering therapy that keeps the condition in check.
What is Gout?
Gout is the most common form of inflammatory arthritis and is caused by a buildup of uric acid in the blood. If left untreated, this serious, lifelong disease can lead to permanent bone, joint and tissue damage, as well as heart disease, kidney disease and an overall decline in quality of life.
According to the Gout Education Society, the signs and symptoms of gout almost always occur suddenly, and often at night. They include:
- Pain and swelling – usually in one or two joints in the feet or legs, most commonly the big toe. During a gout flare, the intensity of the pain is usually described as excruciating (8 to 10 out of 10).
- Limited joint function – After five or more years of recurrent flares, people with gout may develop tophi crystals under the skin and around joints. While generally not painful, tophi can be disfiguring and interfere with normal joint function. The presence of tophi close to bones can lead to bone and cartilage destruction, creating further deformities in the affected joints.
- Chronic persistent arthritis – During the early stages of gout, the inflammatory arthritis is intermittent and during the periods between flares, joints may feel and function normally. Years to decades after the initial flare, flares become painful on a daily basis.
Risk Factors for Gout: Myths and Facts
Gout was historically associated with poor dietary and lifestyle habits such as eating rich foods and consuming excess alcohol. As a result, there is a stigma associated with the disease that keeps some people from seeking treatment.
N. Lawrence Edwards
“Many people erroneously look at gout as a self-inflicted disease,” says N. Lawrence Edwards, MD, MACP, MACR, board chairman of the Gout Education Society and Vice Chairman and Professor of the University of Florida Department of Medicine. “That creates a bias among providers as well as patients, who think it’s their fault and are too embarrassed to talk with their doctor about it. Moreover, because gout has common co-morbidities like obesity, high blood pressure, diabetes and kidney disease – all of which are more prevalent in the Black community – doctors tend to focus on those issues more than gout during patient appointments, thus leaving those patients underserved.”
Dr. Edwards and the Gout Education Society point to a list of common risk factors that can lead to gout:
- Hyperuricemia – High levels of uric acid (above 6.8 mg/dL) can lead to gout flares. The best uric acid level for a person with gout is below 6.0 mg/dL – regardless of age or gender.
- Family history – One in four people with gout has a family history of the disease, yet less than half of people with the disease know it can be hereditary.
- Age – Gout can occur in men during their 30s through 50s and in women in their 60s through 70s.
- Gender – Gout affects men more often than women – although, once women are post-menopausal, their rates of gout increase almost (but not quite) to the same level as men.
- Ethnicity – Some ethnic groups are more likely to get gout than others. This is genetic and varies by ethnicity and other health risks. For example, Hispanics and Blacks are more likely to suffer from obesity, which has been linked to gout.
- Obesity – Only one in ten Americans knows that obesity can contribute to an increased risk for gout. Someone with a Body Mass Index (BMI) of 30 or higher is considered obese.
- Joint injury – People with previously damaged joints are more likely to have gout flares in those joints.
- Diet – Many foods can raise the level of uric acid in the blood, including beer, beef, pork, shellfish and foods or beverages sweetened with high-fructose corn syrup.
- Medications – Use of certain medications – especially diuretics or water pills and certain anti-rejection medications used in transplant patients – can increase uric acid levels in the blood.
Barriers to Gout Treatment
While it cannot be cured, gout can be treated – with pain and inflammation medications that can be taken during flares and daily, lifelong uric acid-lowering medications that help lower serum acid levels. During the first few months of uric acid-lowering therapy, patients should see their doctor every two to three weeks, according to Dr. Edwards, who says that treatments typically start with a low dose and then escalate to the most effective dose over time.
Unfortunately, he says, not everyone complies with treatment protocols. He points to a study by the National Medical Ambulatory Care Service which found that only 10 percent of Black patients return for follow up gout-related visits, compared with 82 percent of white patients.
“That follow up is vitally important to make sure patients have their uric acid levels monitored and that they receive the right drug at the right dose to get to the right uric acid level,” Dr. Edwards says, noting that unless patients get to that target level, treatment is superfluous. “But between the stigma and embarrassment associated with gout, and the very real barriers of inadequate insurance, lack of transportation, and lower health literacy, some underserved populations aren’t receiving the care they need.”
The Cost of Gout
As the incidence of gout rises, so do the costs associated with managing the disease – an additional barrier to care for those in lower socioeconomic groups. Direct gout-related health care costs top $12,000 for patients that have six or more flares per year – a sum that is out of reach even for those in higher socioeconomic groups. Elderly and treatment-resistant gout patients can pay upwards of $18,362 to manage their gout.
According to the Gout Education Society, many of these costs can be reduced by understanding the cause of gout and seeking immediate treatment for the disease – right at the first flare.
Financial assistance for gout treatments is available through the HealthWell Foundation. HealthWell’s Gout-Medicare Access Fund provides Medicare recipients up to $12,000 in grant assistance with copays for prescription drugs and biologics used in the treatment of gout. Independent of the Gout-Medicare Access Fund, HealthWell also offers travel assistance to all eligible patients living with gout. Through the Gout Travel Fund, the Foundation provides up to $2,500 in assistance for travel related to obtaining treatment for the condition.
Know Your Numbers
Dr. Edwards encourages people who have gout – as well as people who have other conditions that can increase uric acid levels, including obesity, diabetes, hypertension and chronic kidney disease – to know their most recent serum uric acid level. If it is not under 6.0 mg/dL, they should talk with their doctor about how and why to reduce it.
“Gout is one of the most poorly treated chronic diseases,” he says. “Only about 15 percent of people with gout stay on an adequate dose of uric acid-lowering medication for their lifetime, which is the treatment period.”
He added that the Gout Education Society is conducting outreach and education among primary care physicians (the provider most likely to treat gout in its early stages) to raise awareness of the prevalence of the disease and the need for proper patient intervention, especially for those patients who need advanced treatment.
On May 22, the Gout Education Society will conduct additional gout-related awareness and education efforts in recognition of Gout Awareness Day, an observance the Society created in 2007 to bring more attention to this overlooked disease. Plans this year call for a series of blogs, Twitter chats and Reddit “Ask Me Anything” Q&As (on r/gout and r/medicine) targeted to patients and providers. Visit gouteducation.org for the latest blog posts and follow along on Twitter and Facebook for more details.