By Mary Kay Clunies-Ross, Executive Director, Chronic Disease Coalition
What is your health worth? What is lost, when your health fails you?
As we at the Chronic Disease Coalition work to advocate for a patient-centered healthcare system, we keep the patient experience at the center. The CDC has an amazing team of Ambassadors who meet monthly to advise us, and we also meet regularly with other patient-advocacy groups in different parts of the country. All of those individuals and groups give us incredible insight.
But we wanted more.
This year, for Chronic Disease Month, we commissioned a survey of more than 1,000 people with chronic diseases. These are people from all parts of the country, all ages, races, family status and walks of life, and we appreciate that they all took time to share their experiences with us.
This is how we defined chronic disease for survey respondents: “A medical condition that lasts for a year or more, and requires ongoing medical attention and/or medication, and/or that impacts your daily living.”
The long and short of it is this: chronic diseases cost a lot. They cost financially, they cost professionally, they cost emotionally. And what’s more, the cost of chronic disease is not “paid” just by the person with the disease—their families, friends, communities and employers also suffer.
Here are some of the study’s key findings:
The high financial cost
- 29% agree with the statement: “Because of the cost of treatment, I sometimes have to make choices between medication, and other basic necessities like rent, food, or school.”
- 24% of people report taking less of their medication than is prescribed, or take it less frequently, in order to save money.
The high professional cost
- About half of people said their condition impacts their ability to work; about 25% of all respondents felt strongly that their ability to work is (or has been) impacted.
- Despite state and federal protection laws, 22% of respondents, or almost 30 million Americans, have felt discriminated at work because of their medical needs.
- Less than 65% have told their employers.
The high emotional cost
- 60% of respondents often feel stressed in dealing with their condition.
- 50% feel “a significant negative impact on mental health and emotional well-being, including feelings of isolation or depression.”
- 40% often feel isolated because of their condition.
- Half of chronic disease respondents worry about the impact of their condition on their children and partners.
- 1-in-4 worry about the impact on their employer.
Other important challenges
The survey illuminates other aspects of the healthcare system, highlighting significant challenges from the very beginning of people’s healthcare journey, starting with diagnosis.
Which leads us to some of the most troubling statistics of all:
- Nearly 1-in-5 respondents have been told “it’s all in your head” or been given some other form of dismissal of their disease by a healthcare professional.
- About one-third of respondents under the age of 40 report experiencing some form of dismissal.
Dustin Miller, a CDC Ambassador from Wisconsin, describes his experience this way: “What really jumps out at me is the feeling of being unheard by professionals and those around me that are not familiar with what it means to live with a chronic disease. While I have some amazing friends and family members who provide wonderful support, unfortunately there are others such as medical professionals, employers and past acquaintances who do not understand the struggle we face despite continually explaining what it means to deal with a chronic disease day-in and day-out.”
This is especially acute, depending on your age and ethnicity.
- About 30% feel they receive a different standard of care because of age, gender or ethnicity
- African American or Black (45%)
- Hispanic or Latino (33%)
- White or Caucasian (29%)
- Asian or Pacific Islander (19%)
- People under 40 are more likely to feel that way, with about half of them agreeing with the statement that they receive a different standard of care.
Tiffany Coles, a CDC Ambassador from Pennsylvania, shares her experience with receiving subpar care due to her age, race, and gender. She says, “It is honestly sad... aside from being young, being a woman and being African American, adds on to other layers… It is disheartening when you go to people who are supposed to help you, and their first instinct is, ‘Oh, it’s all in your head.’ A lot of times you get dismissed and that is just something that happens far, far too often. And like what the survey said, it contributes to those feelings of 6/10 people feeling stressed, and feeling overwhelmed and isolated... it’s almost like an assumed resilience.”
National Implications
There are an estimated 133 million people with a chronic disease in the United States. As a consequence, even comparatively small statistical numbers translate into millions of people.
For example, “only” 20% of people have their symptoms dismissed. But that’s 26.6 million people who are sick, seeking health care, and not getting it. Those delays result in more sick days, pain, discomfort, and time with family and friends—and often, the underlying illnesses get worse while the person waits for a diagnosis and treatment plan.
And a startling statistic for an election year:
- 18 percent of people feel their disease makes it more difficult to vote. That’s 25 million Americans.
Necessity of Policy Change
However isolating it is to have a chronic disease, the overwhelming numbers prove that we don’t have individual patient problems, we have a healthcare system problem. That’s why we have to make policy changes and level the playing field for all families.
“This survey makes it very clear that policymakers must do more for patients when it comes to affording their treatment,” said CDC Director of Advocacy Nathaniel Brown. “But what really stuck out to me was the broad sense of isolation and discrimination that patients are experiencing when they interact with the healthcare system — advocating for policy is probably not high on their priority list. They’re in survival mode.
“We have to make our legislative process more inclusive, more welcoming, more accessible to everyone,” he continued. “And that’s the goal of organizations like ours. That is why we exist.”
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Thank you
We are grateful to the many patients who give us advice and insight every day. If you would like to learn more about getting involved with the CDC or directly with your lawmakers, please visit https://chronicdiseasecoalition.org/get-involved. There are different ways you can share your time or insights, and we invite you to look around and let us know if you have any questions.