By: Amy Niles, Chief Mission Officer, PAN Foundation

Against the backdrop of rising health care costs and increased living expenses, millions of people in the U.S. are being forced to make difficult decisions that could impact their health.

Disparities based on race, ethnicity, language, sex and gender identity, sexual orientation, geography, and other socioeconomic factors have long contributed to unequal access to health care, positive health outcomes, and even life expectancy.

To better understand these challenges and the diverse needs of patients as they navigate the complex U.S. health care system, the Patient Access Network (PAN) Foundation recently launched our annual State of Patient Access initiative. This groundbreaking initiative uses a comprehensive national survey of 2,500 patients with chronic conditions, conducted by The Harris Poll.

The patient survey results were synthesized into a 2024 State of Patient Access Scorecard, which includes composite ratings across five key categories:

• Overall Access to Care = C+ (78.8)
• Relationship with Healthcare Professionals = B (84.2)
• Affordability of Prescription Medications = B- (82.3)
• Access to Treatment through Healthcare Plans = D- (62.8)
• Financial Toxicity = C- (70.7)

Achieving far from a model report card, the 2024 report reveals patients with chronic diseases face deep challenges accessing and affording needed health care and treatment — from insurance barriers to financial obstacles. While this is true across all demographic groups, patients of color and LGBTQIA+ patients face the most challenges.

Access to treatment through insurance, both public and private, is one of the greatest challenges patients face today, earning the lowest grade of “D-.” In fact, nearly half of patients with chronic diseases (49%) reported they had faced some form of insurance-related barrier to accessing their prescription medications.

Notably, the Access to Treatment through Healthcare Plans category fell to a failing grade of “F” among Hispanic, Native American or Pacific Islander, and LGBTQIA+ patients, as well as younger patients (Gen Z or Millennials) and those with lower incomes (earning less than $50K per year). This underscores the pervasiveness of health disparities and the impact of a patient’s race, identity, age, or income level on their ability to access care through their health plan.

Having health insurance does not sufficiently protect people from financial toxicity — regardless of insurance type. The Financial Toxicity (“C-“) category reveals the extent of financial hardship, anxiety, and negative impact caused by health care costs. Overall, nearly one-quarter (22%) of patients said financial toxicity impacted them a great deal or a lot, with patients of color, LGBTQIA+ patients, and younger patients reporting higher rates of financial toxicity.

The category, Overall Access to Care (“C+”), is challenging for everyone, but even worse for historically marginalized communities. Two in five (38%) patients reported feeling that some aspect of their identity — such as their race/ethnicity, age, gender identity, or income — negatively impacted their ability to get the best possible care.

While patients scored high with the Affordability of Prescription Medications category (“B-”), one in five (20%) patients said their prescriptions were not affordable. Access to prescription medications is even harder for Hispanic, Native American or Pacific Islander, and LGBTQIA+ patients.

Finally, patients give higher marks in the Relationship with Healthcare Professionals category (“B”). However, LGBTQIA+ patients and Gen Z and Millennial patients gave this category a “C” and “C+” respectively.

The bottom line is patients in the U.S. with chronic conditions continue to struggle to afford and access the care they need and deserve. The time for action is now and these findings point to several key opportunities, including:

• Exploring legislative and regulatory policy solutions that can improve access to care for adults living with chronic conditions;
• Improving education and outreach efforts to advance health literacy; and
• Improving awareness of and access to needed financial assistance.

As part of the PAN Foundation’s efforts to educate and advocate for change, we are launching our new Center for Patient Research to provide evidence-based insights that convey the diverse needs of patients as they navigate the health care system and challenges accessing affordable, equitable care. We must do better.

With this Center and our continued research efforts, we aim to understand the challenges faced by patients and translate these findings into actionable knowledge. Through these findings, the PAN Foundation will continue to help inform the policies of health care stakeholders and policymakers that lead to accessible, equitable, and affordable health care for all.

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About Amy Niles, Chief Mission Officer, PAN Foundation

Amy Niles is a knowledgeable health care executive with a passion for growing sustainable health organizations, advocating for patients, and building strategic partnerships to address public health needs. As PAN’s Chief Mission Officer, she leads the organization’s education initiatives, program development, clinical affairs, and advocacy strategy, while overseeing public policy and advocacy initiatives, external relations, and marketing and communications.

She developed the framework for PAN’s national advocacy platform in 2013 and has been leading the initiative ever since. As a result of her leadership and proactive analysis of the legislative and regulatory environment, external stakeholders, and policymakers have come to view PAN as a thought leader and “go-to” resource. She has been quoted in The New York Times, TIME, and HuffPost and has authored and co-authored numerous opinion pieces and articles about Medicare reforms and affordability.

Niles believes that no one with a serious illness should have to worry about how to access and afford treatment. She is motivated every day by the knowledge that she is working to fill gaps in the nation’s health care system to support vulnerable populations, one person at a time.

The Pan Foundation is a member of the National Health Council. For more information on NHC membership, please email membership@nhcouncil.org.