June 15, 2022
U.S. Department of Health and Human Services
WHY WE DID THIS STUDY
The disparate impacts of the COVID-19 pandemic on various racial and ethnic groups have brought health disparities to the forefront. Health disparities are differences in health that adversely affect certain groups. People of color have been found to experience disparities in areas such as access to care and quality of care. Such disparities have profound implications for the health and well-being of these individuals.
Medicare is an essential part of the Nation’s health care system, with 66 million beneficiaries enrolled. CMS has made advancing health equity a top priority. Ensuring that Medicare is able to assess disparities is key to this goal. The ability to assess health disparities hinges on the quality of the underlying race and ethnicity data.
HOW WE DID THIS STUDY
We analyzed the race and ethnicity data in Medicare’s enrollment database, the only source of this information for all enrolled beneficiaries. These race and ethnicity data are derived from source data from the Social Security Administration and the results of an algorithm that CMS applies to the source data. We assessed the accuracy of Medicare’s enrollment race and ethnicity data for different groups by comparing them to self-reported data for a subset of beneficiaries who reside in nursing homes. Race and ethnicity data that are self-reported are considered the most accurate. We also assessed the adequacy of Medicare’s data using the Federal standards for collecting race and ethnicity data as a benchmark.
WHAT WE FOUND
Medicare’s enrollment race and ethnicity data are less accurate for some groups, particularly for beneficiaries identified as American Indian/Alaska Native, Asian/Pacific Islander, or Hispanic. Data that are not accurate limit the ability to assess health disparities. Limited race and ethnicity categories and missing information contribute to inaccuracies in the enrollment data. Although the use of an algorithm improves the existing data to some extent, it falls short of self-reported data. Finally, Medicare’s enrollment data on race and ethnicity are inconsistent with Federal data collection standards, which inhibits the work of identifying and improving health disparities within the Medicare population.
WHAT WE RECOMMEND
Advancing health equity is a priority for CMS and the Department. Race and ethnicity data are foundational to identifying and understanding health disparities among Medicare beneficiaries and to assessing the effectiveness of efforts to reduce such disparities. It is critical that these data are accurate, complete, and comprehensive. Therefore, CMS must improve its race and ethnicity data; though a significant undertaking, the need for better data is pressing. Accordingly, we recommend that CMS: (1) develop its own source of race and ethnicity data, (2) use self-reported race and ethnicity information to improve data for current beneficiaries, (3) develop a process to ensure that the data are as standardized as possible, and (4) educate beneficiaries about CMS’s efforts to improve the race and ethnicity information. CMS did not explicitly concur with the first recommendation and concurred with the other three recommendations.
The rate of Americans diagnosed with diabetes isn’t slowing down, and the Covid-19 pandemic only exacerbated the risks and concerns for this debilitating chronic disease.
According to the American Diabetes Association, 1.5 million people will be diagnosed with diabetes this year. So why aren’t more people talking about it? The pandemic may have shifted the collective focus. After all, a nation in health crisis mode can only focus on so many problems at once. Yet hospitalizations and deaths due to diabetes or related complications were right behind the elderly and nursing home residents.
Aside from the pandemic pileup, the disease was not getting the attention it warranted, partly because of how the stigma attached to diabetes impacts our concern, even as it affects more people each year.
Between 1980 and 2014, the number of people with diabetes rose from 108 million to 422 million. “Prevalence has been rising more rapidly in low and middle income countries,” reports the World Health Organization. Diabetes can lead to blindness, kidney failure, heart attacks, stroke, and lower limb amputation.
Why Aren’t More People Talking About This?
“Diabetes is always swept under the rug because, in so many people’s minds, they just associate it with bad health habits and being overweight,” says Deena Fink of New York City. The Long Island native bartends in the West Village in addition to running a small online knitting business.
Most days, her Type 1 Diabetes doesn’t slow her down. It’s a disease she has been living with for sixteen years. “What really has to change is the stigma of diabetes,” Deena explains in an interview with Wealth of Geeks.
She is grateful for her health care plan, despite the roadblocks she often faces to receive her medication. “They have to start actually treating it as a chronic illness.”
Like many others during the first months of the pandemic, Deena was afraid to leave her house. “I didn’t even want to leave the house to go grocery shopping,” she says. The risks are different for someone with a chronic illness. “Just getting a cold, I am knocked out for several days.” She also could not get to a doctor’s office.
“You’re supposed to get your A1C done every quarter,” she explains, but she couldn’t see her doctor for a year and a half. So instead, Deena had to estimate what those numbers would be. The A1C test provides a three-month average of what blood sugar levels should be. It’s how a person with diabetes keeps themselves in range.
Deena faces a monthly battle with the insurance company just to receive her regular dosage of three insulin vials. Without insurance, she would have to pay $175 per vial.
The Global Factor
While lifestyle changes such as maintaining a healthy weight and diet, engaging in physical activity, and not smoking may decrease the health risks associated with diabetes, it does not guarantee that the disease won’t have harmful symptoms over time. Additionally, Covid-19 increases these risks across the globe.
Diabetes was responsible for 6.7 million deaths in 2021, according to the International Diabetes Federation. In addition to the 537 million adults living with diabetes today, an additional 541 million have Impaired Glucose Tolerance, a condition that places them at high risk of Type 2 Diabetes.
And what about the financial side? WHO reports that “diabetes caused at least 966 billion dollars in health expenditure – a 316% increase over the last fifteen years.”
As more people are diagnosed, the opportunity for visibility and change grows. Those with diabetes often become advocates for change.
“Stigma can result when you take an ‘invisible’ condition like diabetes out into the open,” says diabetes advocate Michael Donohoe of Ohio. When he was diagnosed with Type 2 Diabetes, he was also diagnosed with a heart condition. “I try to improve awareness and understanding by being as open about my diabetes as possible. I also advocate loudly for people who are newly diagnosed or severely impacted,” he says.
Covid Collision
Although the elderly and nursing home residents were hit hardest by the virus, people with diabetes were right behind them. This news comes to light as the total number of deaths in the United States nears one million.
“People with poorly controlled diabetes are especially vulnerable to severe illness from Covid, partly because diabetes impairs the immune system but also because those with the disease often struggle with high blood pressure, obesity, and other underlying medical conditions,” reports the New York Times.
Those with diabetes have to keep up with their disease constantly. “It’s a disease that’s a pain,” says Deena, “because you never stop taking care of yourself. Every decision you make for every day of your life will affect your diabetes.”
“It’s so much work,” she says, “but it keeps you alive.”
With diabetes diagnoses soaring across the globe, it is only a matter of time before the world stops hiding from this health crisis and confronts it head-on.
Read more on HHS Office of Inspector General





