Tiara Green: Advancing Health Equity for Rare Disease Patients

With nearly $220 billion in medical debt burdening Americans today, health equity for patients, especially those living with rare diseases and chronic conditions, has never been more critical. Individuals managing rare diseases often face disproportionately high healthcare costs, complex navigation through the healthcare system, and significant disparities in access to necessary care. Tiara Green, President of Accessia Health, offers a unique and powerful perspective rooted in personal experience and professional expertise, aiming to bridge the gap between financial hardship and quality care. Through a model built on education, patient advocacy, financial assistance, and strategic healthcare partnerships, Green’s leadership at Accessia Health exemplifies an actionable commitment to health equity.

Why Rare Disease Care is a Healthcare Equity Issue

Rare disease patients face unique healthcare equity challenges primarily due to significantly higher medical costs and less available treatments. According to Green, rare conditions demand extensive care, which translates into high out-of-pocket expenses—often tens of thousands of dollars annually.

“Americans collectively have $220 billion in medical debt”

Accessia Health tackles this inequity by providing critical financial assistance that covers medication copays, premium assistance, and necessary medical supplies.

Navigating Policy Changes: The Impact on Patients

Healthcare policy changes, such as the Inflation Reduction Act set to take effect in January 2025, directly impact patient affordability. Tiara Green emphasizes the necessity for organizations to proactively adapt their support structures to address these policy-driven changes effectively:

• Medicare Part D will implement a $2,000 out-of-pocket cap, yet even this sum remains unaffordable for many patients.
• Accessia Health strategically adjusts its services to continue supporting individuals who still find these costs prohibitive.

“We step in and adapt based on those policies when they are implemented,” Green says, underscoring their responsive, patient-centered strategy.

Education as the Key to Improved Health Outcomes

One of the most critical yet overlooked components in healthcare equity is health literacy. Green emphasizes its role, stating clearly that improving health literacy directly reduces costly and preventable hospitalizations:

• Patients with low health literacy experience higher emergency room visits and longer hospital stays.
• Effective health education ensures proactive rather than reactive healthcare management.

Green’s commitment to education is personal and professional. Her career began in community health education, shaping her approach at Accessia Health. She describes their education initiative, “Amplify Your Voice, Control Your Care,”designed to empower patients with essential knowledge and resources.

Addressing Social Determinants Through Community Engagement

Health disparities cannot be addressed without confronting social determinants of health. Tiara Green discusses the Louisville Community of Care Project as an example of targeted community engagement that significantly improves healthcare access:

• Faith-based and community-led initiatives build trust and ensure culturally sensitive outreach.
• Accessia Health’s role includes funding preventive screenings, crucial for early diagnosis and better outcomes.

Green advises that meaningful community partnerships require respect and collaboration, not domination. “It has to be in the mindset of, how can we put our resources together and work together on our common and shared goals?” she states, highlighting a cooperative approach as essential for success.

Maximizing Impact through Strategic Resource Management

Nonprofit healthcare organizations often face the dual challenge of needing efficient internal systems while navigating external bureaucratic hurdles. Green outlines critical strategies for maximizing the impact of limited resources:

• Investing in robust IT infrastructure to enhance operational efficiency.
• Minimizing administrative costs to ensure maximum funding directly supports patient care.

This approach is vital, Green explains, because every dollar saved on operations directly benefits patients who desperately need financial assistance and healthcare advocacy.

Legal Aid: An Underappreciated Necessity in Healthcare

Legal assistance is often overlooked in healthcare strategy but is crucial for patients navigating complex systems such as Social Security Disability Insurance (SSDI). Green points out that legal aid not only provides critical representation but also empowers patients to advocate for their rights effectively.

• Accessia Health provides free legal assistance for SSDI appeals.
• Legal support also includes workplace accommodations and educational support planning for patients and their families.

Taking Action: Steps for Effective Community Partnerships

For organizations looking to enter community health partnerships, Green emphasizes a thoughtful and informed approach:

1. Research thoroughly before reaching out to potential community partners.
2. Identify alignment in goals and clearly articulate mutual benefits.
3. Initiate respectful dialogue by first seeking to understand ongoing efforts and needs.

Green advises executives to start by simply reaching out, stating clearly, “Let me learn because you have to listen first to determine how you can partner with that organization moving forward.”

Conclusion: A Shared Responsibility for Healthcare Equity

Addressing healthcare equity, especially for rare and chronic disease patients, demands more than goodwill—it requires strategic leadership, meaningful community partnerships, proactive policy adaptation, and comprehensive patient education. Tiara Green’s insights from Accessia Health illuminate a clear path forward. Organizations and healthcare leaders must unite their resources and expertise, working collaboratively toward a shared goal: equitable, accessible, and affordable healthcare for every individual.

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