If you or someone you know is dealing with Ehlers-Danlos Syndromes (EDS), understanding the financial impact is crucial, and until now could not be quantified by research. A recent study’s results published in early 2025 recaps the highlights. The new report, The Financial Impact of Ehlers-Danlos Syndromes on Patients in the United States in 2022 by Jane R. Schubart, PhD at Penn State College of Medicine and a team of several EDS experts brought to light some eye-opening facts about the costs that come with managing EDS in the United States in modern day.

Top Data Points to Know from Report

The study, funded by the non-profit EDSRF, used a survey that reached out to 884 people across every state with a big push from the Chronic Pain Partners patient community participating. It ran from April to December 2023, collecting data from various sources including social media, healthcare professionals, and patient advocacy groups. Here’s a snapshot of what they found:

Most of the respondents are really feeling the financial pinch with more than half earning below $25,000 annually, and a significant chunk under $50,000 for household income. Despite these modest incomes, 80% have some sort of commercial insurance, and 29% are on Medicaid.

But here’s the kicker: the median annual out-of-pocket cost for EDS-related medical expenses was a hefty $13,450. These expenses range widely, covering everything from insurance premiums and copays to non-traditional treatments and mental health care. What’s more troubling is that 19% of those surveyed despite spend didn’t get the healthcare they needed overall, pointing to serious gaps in coverage and accessibility.

Patients typically visited specialty physicians 12 times and had around 20 sessions of physical or occupational therapy in a year, which shows just how much care is needed to manage EDS symptoms. In our opinion, these numbers are small, where many of us use much more, for example like ongoing maintenance physical therapy more to the tune of 30+ visits a year.

We believe there’s a lot to unpack in the report, especially what’s not said underpinning the data that you should consider as high-impact information: For some, EDS equals financial devastation and/or bankruptcy for many families. The household income of less than $50,000 reported by more than 30% of respondents can be near or below the poverty level depending on the household size. For a family of four, the federal poverty level is $27,750, so a household income under $50,000, while above the poverty threshold, does not provide much leeway when considering the burden of EDS-related medical costs, which can significantly impact the financial stability of the entire household.

So, on average despite having incomes above the federal poverty line, many EDS families likely experience financial strain due to the disproportionate impact of medical expenses on their relatively modest incomes. This doesn’t even take into consideration the genetic nature of EDS that it runs in families, where multiple family members can be impacted with expensive health issues compounding costs. We believe this report provides the first view into costs of chronic care, but shows only a glimpse into the financial burden EDS can have.

So, what does all this mean? It’s clear that EDS patients face significant financial and healthcare hurdles. Even those with insurance are finding themselves bogged down by high out-of-pocket costs, highlighting the need for better support and insurance options that specifically address the needs of the EDS community. What can be done about it is the call to action.

A Loud Call to Action
For patients, this information is vital for both healthcare and financial planning and underscores the importance of pushing for new and better legislative and healthcare policies for the rare disease and chronic illness community at large. This study doesn’t just help patients manage their costs expectations better—it’s a call to action for healthcare providers and policymakers to take a closer look and improve the systems in place.

The stark data on the financial impact of EDS not only sheds light on the considerable expenses borne by those affected but also underscores a broader systemic failure. The current healthcare and insurance frameworks are ill-equipped to handle the nuanced and multi-specialty needs of EDS patients, leading to severe financial strain and inadequate medical care for many affected.

Here are specific changes we should be advocating for within the EDS community and beyond:

1. Insurance Reform: Push for legislation that mandates broader coverage for chronic illnesses like EDS, ensuring that insurance policies cover a full range of treatments including physical therapy for maintenance care (not just acute injury), specialized surgeries, and mental health services. This should also include coverage for integrative and allied health therapies which are often indispensable yet categorized as out-of-pocket expenses.
   
   
2. Caps on Out-of-Pocket Expenses: Advocate for state and federal caps on out-of-pocket expenses for chronic conditions to prevent financial ruin due to medical costs. This reform would provide significant relief by ensuring that patients don’t exceed a manageable threshold of spending on health care for the thousand things we pay for that are not tracked such as supplements, over-the-counter remedies, therapy, adaptive equipment, and so much more.
   
   
3. Research and Funding: Increase funding for EDS research to develop more effective and potentially less expensive diagnostic and treatment options. A dream, right? We all wish for this, and our advocacy could help nonprofits and researchers get us there one day. Imagine that day where a single, EDS-focused provider knew how to diagnose, test, and recommend treatment plans under a collaborative multi-systemic holistic perspective, avoiding multiple specialist visits. In the current US healthcare system – this is a dream! That’s likely many years (or maybe decades) away, but a general better understanding of EDS across medicine and inclusion of more detail on various connective tissue disorders in medical school, nurses training and beyond could begin to help.
   
   
4. Public Awareness Campaigns: Let’s continue to work together to raise public awareness to educate policymakers, insurers, and the broader public on the realities of living with EDS and the critical need for supportive healthcare policy changes.
   
   
5. Community Support Networks: Let’s continue to strengthen our support networks within the EDS community to share resources and take advantage of free financial counseling from nonprofit organizations like the Patient Advocacy Foundation to assist in navigating insurance and unravelling healthcare bureaucracies.
   
   

By thinking about ways we can connect and push for change, we can forge a path toward a healthcare system that truly supports the wellbeing of every EDS patient, ensuring they have access to the care they need without the accompanying financial distress in the future. Let’s mobilize as a community to turn these ideas into action and ensure a brighter, healthier future for all living with Ehlers-Danlos Syndrome. Together, we can make a difference.

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