IfPA’s Health Policy Blog explores health policy news, reports, initiatives and events through the lens of a single question: What is the impact on patient access?

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Narrowing the Gout Information Gap

There’s an ongoing research boom and more treatments than ever before, yet the battle against gout continues to be hampered by an information gap.

Now, advocates are optimistic that a new resource, the Gout Index, could help fill that void.  

Prepared by the National Minority Quality Forum and released in partnership with the Alliance for Gout Awareness, the tool maps out cases and claims information by zip code, congressional district, county and state. 

Misunderstood and Misdiagnosed 

The Gout Index was created to help the public, health care providers and policymakers learn more about the current state of disease. Its launch coincides with Gout Awareness Day, which is an annual observance every May 22 to help raise public awareness and demystify the condition. 

“It is a misunderstood disease,” explains Mary Stober Murray, Vice President of Collaborative Action Networks at the National Minority Quality Forum, “which means it is frequently undiagnosed or misdiagnosed. Patients know this, which contributes to their reluctance to talk about their symptoms or seek appropriate treatment.” 

Those who worked on the Gout Index hope it will be a conversation starter this Gout Awareness Day.  

“Talking about gout is necessary to addressing the social stigma that comes with having it,” according to Josie Cooper, executive director of the Alliance for Gout Awareness. “And that’s a vital first step to addressing gout’s disproportionate impact on certain racial and ethnic minorities.” 

Data Reveal Areas of Need 

The pair of organizations released a paper in conjunction with the launch of the Gout Index. “Perspectives and Recommendations on Gout Prevention, Care and Existing Disparities Utilizing Medicare Data” provides an overview of the state of gout in the United States that is derived from the Gout Index. 

Of note, the paper’s regional and geographic analysis summary found:  

  • Racial and ethnic disparities are prevalent. In the United States, Black Americans and certain communities of Asian Americans experience the highest rates of gout. 
  • Gout prevalence is greatest in the southeast. A lack of public health investment, regional diet and limited access to less processed food are contributing factors, according to the paper.  
  • Obesity and gout are strongly connected. Index maps show considerable overlap between the two conditions, suggesting a need for greater focus by policymakers.  

The paper also highlights the ongoing need to better understand and combat health disparities and discusses the significant role of policy and community in improving outcomes for those suffering with gout. 

Data is a necessary component when working to address disparities and in advocating for improved access. With the launch of the Gout Index, policymakers and community members have a new source to help with those efforts.  

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