Driving Equity in Gout Care
Throughout 2022, Real World Health Care is covering the issue of racial and ethnic health disparities. This week, we explore the topic through the lens of gout, a type of arthritis that has a higher prevalence among racial and ethnic minorities, especially Blacks, than whites.
Michael Spigler, vice president of patient services and kidney disease education, American Kidney Fund (AKF), shared insights on the special challenges facing those living with gout and how AKF is working to address disparities in access to gout care.
The Gout-Kidney Disease Connection
Real World Health Care: Tell us how the American Kidney Fund supports the gout patient community through programs, services, education and research.
Michael Spigler: Given that kidney disease can cause gout and that gout may also lead to kidney disease, it is important for the American Kidney Fund to educate our community about how the two diseases are related, helping to improve overall health outcomes. One out of 10 people with chronic kidney disease have gout, and an even higher percentage of people with gout have kidney disease. Many people with kidney disease have uncontrolled gout, which can make kidney disease worse and lead to other complications.
AKF’s educational campaign Goutful, helps patients develop an understanding of their risk for gout, its relationship to chronic kidney disease and the necessity of treating gout as a chronic disease, rather than a series of acute episodes. Goutful, a blend of the words “gout” and “doubtful,” debunks popular misconceptions about gout and helps chronic kidney disease patients understand their risk for gout. The campaign fills an information void for patients, who often face significant stigma because gout is commonly misunderstood and misperceived as being caused by overindulgence.
The campaign includes a range of resources for renal professionals and patients, including a “Myths & Facts” quiz to debunk many of the misconceptions about gout. The campaign also features a wealth of online information to support and educate patients, including original videos and information to help people navigate conversations with a doctor. More campaign information and a variety of resources are available at KidneyFund.org/Gout.
Take Gout Seriously
RWHC: What are some of the biggest challenges people with gout face in terms of accessing proper care, complying with treatment protocols and affording their treatments?
MS: One of the biggest challenges people with gout face is that gout is often not taken seriously, although it can be excruciatingly painful. The patient is sometimes blamed for the condition because it is perceived to be a result of the patient’s choices, but gout is not a patient’s fault. Gout attacks, also known as flare-ups, may occur when the body creates too much uric acid or cannot properly clear uric acid. There may be certain foods patients should limit if they are prone to gout, and certain foods may help decrease the level of uric acid in a patient’s body, but diet alone is not a cure. People with gout who follow a healthy diet may still need medicines to prevent gout attacks by lowering the level of uric acid in their body.
In terms of complying with treatment protocols, gout is often poorly managed for several reasons, including a lack of adherence to treatment guidelines by health care providers, lack of adherence to therapy by patients, and differences between a provider’s and patient’s perspectives regarding treatment. A key barrier to gout management for many patients and their care team is the perception that gout is an acute condition that requires treatment only during a painful flare. Often, gout patients feel their care team is not taking their chronic symptoms seriously, which dissuades them from being compliant with the treatment plan provided by their care team.
In regard to affording treatments, gout patients spend more than $11,000 each year to manage their health problems. By contrast, people with no chronic illnesses spend less than $2,000 annually on health care, on average. Treatment of chronic gout may require multiple medications, which ultimately leads to a combined economic burden. Additionally, flares in patients with refractory gout significantly affect patient work productivity and social activities. This can lead to employed patients missing work due to gout attacks.
RWHC: Why is it particularly important for people with gout, who may only experience a couple attacks a year, to comply with medication protocols?
MS: Gout, especially chronic gout, isn’t just painful – it can also lead to serious health problems if left uncontrolled, including kidney disease and kidney failure. Living with gout pain can be emotionally distressing because it affects your ability to walk, work and carry out normal tasks. It is also important for patients to talk with their doctor about the impact that gout has on their emotional health and to ask about ways to cope. Additionally, chronic swelling and tophi, meaning clumps of urate crystals that form on most joints and cartilage, can lead to permanent damage and deformity. In the worst cases, patients may need surgery to fix or replace damaged joints.
When you have both gout and kidney disease, treating gout can be difficult because some medicines, such as NSAIDs, are not safe for the kidneys. Some of the most common medicines for acute and chronic gout should be adjusted or avoided when you have kidney disease. Additionally, some people with kidney disease take medicines that may increase their risk of gout. For example, water pills and beta-blockers, two common medicines for high blood pressure, can contribute to gout attacks. Taking too many medicines or taking certain medicines at the same time can be dangerous, so it is very important for patients to talk with their doctor about the medication protocol that is best for them.
Addressing Racial Disparities
RWHC: How is the American Kidney Fund addressing racial disparities in gout?
MS: Since its founding over 50 years ago, the American Kidney Fund has focused on improving health care access and outcomes for populations underserved by our health care system, including people of color. AKF was founded to make access to lifesaving kidney care possible, and the need for our programs has grown exponentially over the decades as the U.S. kidney disease population has exploded. Health equity is a through-line in all our efforts, including the Goutful campaign, to help those most at risk receive the quality care they deserve. We recognize more needs to be done so that everyone can have the same opportunities to live healthier lives, from driving early detection and accurate diagnosis in at-risk communities, to increasing patient diversity in clinical trials to be representative of the audience that the medications will seek to treat. However, it is about more than access. To truly improve kidney health outcomes in our country, we must address the inherent bias and racism within our health care system, as well as the socioeconomic factors that directly impact kidney health outcomes.
In all of our education efforts, we ensure that we produce culturally competent materials that also adhere to health literacy standards. We also deploy specific targeting to reach communities most at risk for certain conditions, to ensure our education expands beyond those already engaged in our community.
We also consider the role of social determinants of health in patient outcomes. These determinants include economic stability, education access and quality, health care access and quality, neighborhood environment and social and community context. To support economic stability and health care access, our Health Insurance Premium Program has been helping support patients in need. In 2021, amid the pandemic, our program not only helped more than 70,000 low-income kidney patients stay insured, it also made kidney transplants possible for more than 1,889 dialysis patients or about 7 percent of all kidney transplants performed in the United States. Without AKF’s help, these patients would not have been able to afford transplants. Compared to the overall U.S. population, those that AKF helps are disproportionately from historically underserved communities. In 2021, over 60 percent of our grant recipients were people of color.
We also worked closely to develop bipartisan legislation with Reps. Lisa Blunt Rochester (D-DE) and Brad Wenstrup (R-OH) – called the Coordination, Accountability, Research and Equity (CARE) for All Kidneys Act – focused on addressing the disparities in communities of color and communities underserved by the health care system that can lead to kidney disease. The CARE for All Kidneys Act would create a national action plan that brings together key stakeholders, including the National Institutes of Health (NIH), the National Institute of Diabetes and Digestive and Kidney Diseases at NIH and the Centers for Disease Control and Prevention to address health disparities in kidney disease. The bill would support initiatives like expanding ongoing kidney disease research and addressing lower kidney transplantation rates in underserved communities. The CARE for All Kidneys Act is a vital first step in addressing the inequities that exist in our health care system for Americans of color and those in rural communities with kidney disease. We need every American—regardless of race, ethnicity or the neighborhood they live in—to have access to comprehensive and affordable diagnosis and treatment options that address kidney disease and related diseases like gout.
AKF also continues to support innovation and research in the kidney disease community, including helping increase diversity in clinical trial recruitment. We hope one day a cure will be discovered for patients with gout.
Editor’s Note: Financial assistance for gout treatments is also available through the HealthWell Foundation. HealthWell’s Gout-Medicare Access Fund provides Medicare recipients up to $12,000 in grant assistance for copayments 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.