“Would you work with RFK, Jr.?”
The National Journal reporter asked a simple, direct and potentially loaded question.
President-elect Donald Trump and his choice for Health and Human Services Secretary, Robert Kennedy, Jr., are talking directly about the epidemic of chronic disease in this country. Considering there are 133 million Americans who manage chronic diseases, more policymakers should be. One of the central goals of the Chronic Disease Coalition is to help the public understand the scale and complexity of chronic disease in the U.S., and it’s good to see the issue being raised by the incoming administration.
Chronic disease is costing our country and our families
Whether you’re talking about chronic kidney diseases, asthma, diabetes, arthritis, hypertension, genetic and rare diseases or anything in between, many of the challenges are universal across disease groups.
Chronic disease comes with a high cost to individuals, families, communities, employers and our economy. Healthcare is about 18 percent of our country’s GDP—almost $13,500 per person. Costs are going up and by many measures, we’re not getting healthier.
Chronic disease isn’t just a federal-budget problem—it affects every level of government and every employer, and of course, individuals and families. Chronic conditions make it hard and sometimes impossible to work, while also eating away at finances, energy and other aspects of a good life. See our 2024 national survey results here for data that illuminates the impact.
Policymaking needs to put patients at the center
It’s a central tenet of the Coalition that policymaking at the state and federal level needs to be patient-centered. Patients know what they need: fewer administrative and cost barriers to their healthcare providers and to effective treatments.
At the clinical and insurer level—and in broad strokes— we need faster diagnoses, better medications, more treatment options, better care coordination, more integrated mental health services and fewer hoops such as prior authorization.
How can we combat chronic disease when our stresses and living conditions are part of our illnesses? At the community and public health level, we can support patients and reduce the overall prevalence of chronic diseases with better air, water, food, economic stability and less stress. That list is not inclusive, of course, but lifestyle, workforce and environmental policies all affect chronic disease and should be on the table.
Where the solutions are
Awareness of the depth and complexity of chronic disease is desperately needed. The problems are bipartisan; sustainable public policy will be, too.
Lasting solutions will incorporate what we know about health and what works for families and communities. We have an extraordinary foundation of research about how to prevent and treat disease. Scientists in government, academia and industry have worked together and learned so much. We need to build on that.
The vaccine question
Disease is expensive.
Health is an incredibly individual personal experience. We work with patients every day, hearing their stories and telling their stories. When you’re thinking about human suffering, it’s sometimes uncomfortable to talk about cost.
But disease is expensive, and we all pay, directly and indirectly. Cost is also a core focus for laws and regulations, so we need to be comfortable talking about what drives cost.
It’s inevitable that people bring different strategies to the policymaking table, but the experience of chronic disease patients leads us to a strong bias toward vaccines. People who already have chronic diseases are more likely to get sick, stay sick or die as the result of contagious diseases. Avoiding a contagious disease can also mean avoiding a chronic one, so there are lifetime cost-savings there as well.
Full disclosure, I’m not a healthcare provider or an economist. I don’t know very much about polio, diphtheria, pertussis, hepatitis, chicken pox, measles, or mumps, but they’re expensive to treat, hard to recover from and can slow down whole industries and populations. Vaccines seem cheap in comparison, and have decades of research behind them. We recognize there is not a universal acceptance of this mantra. At the coalition, we strive to keep safe, effective vaccines accessible and equitable for those who need them.
Prevention and treatment need to be simultaneous
The new administration—and new Congress, and every new legislature in every state—face simultaneous challenges. We must work together to take care of people right now. Chronic disease patients need access to innovative, affordable treatments to live full lives. Young patients especially need access, as getting the right treatment now has a huge impact as to where their lives are at 40, 50 and 60 years old.
We must simultaneously improve the conditions that contribute to chronic disease in the first place. Vaccines slow and eliminate contagious diseases, and that’s important. Lifestyle and environmental science have driven dramatic improvements in human health over the centuries, and we need continued progress on those fronts as well.
There’s a lot of work to be done and it’s no time to be distracted. Congressional leaders of both parties currently manage disease, as do their families and friends. We know that people need more and better healthcare–not less. If we’re serious about bending the chronic disease curve, we also need more and better research, more innovation and meaningful cooperation.
“Would you work with RFK, Jr.?” is a simple and direct question. It’s just not the right one. The right line of questioning starts with: What do patients need right now in terms of cost support, access to care, new and better treatments? How can we create healthy environments for all communities and families?
What’s next?
The Coalition has set its 2025 policy agenda and we’re getting ready for another year of putting patients at the center. Patients and other patient groups have the experience that should guide policymakers, and we’re going to give you the tools and information you need to advocate for yourselves, as well.
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We’re looking for another year of telling your stories and making life better for patients and families. Rest up, and we’ll see you in January!
Onward,
Mary Kay