Impact Report 2024

2024 Impact Report

Compassion

Accountability

Person Centered

Service

MISSION

To provide the financial safety net, products, services, and assistance to individuals and families living with rare or chronic health conditions.

VISION

All people have equitable access to healthcare.

Dear Friends and Supporters, 2024 brought meaningful progress for Accessia Health, one marked by innovation and stronger relationships across the healthcare landscape. Guided by our core values of compassion, accountability, personcentered, and service, every decision and initiative this year reflected the principles that define our organization.

In my first year as president, I had the privilege of witnessing firsthand how deeply our work impacts the lives of those navigating rare and chronic conditions.

We sharpened our focus on creating a seamless, personcentered experience for every individual who turns to us for support. Each advancement reflects our belief that access to care should be simple and equitable.

Technology played a central role in that progress. Our upgraded patient portal and enhanced application process simplified how people connect with the help they need, while our AI chat feature handled thousands of inquiries, helping people get quick answers and reliable support. And our comprehensive website continues to be a vital resource, drawing both new and returning visitors each year who rely on it for timely information and direct access to assistance.

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Accessia Health’s reach expanded again this year, with new programs opening to support those living with heart failure, oral health challenges, Myelodysplastic Syndromes, Thrombotic Thrombocytopenic Purpura, and

other rare and chronic conditions. Each initiative represents a stronger safety net for people who often face limited options to support their condition.

Health Council and the Forbes Nonprofit Council, along with being recognized as a Healthy People 2030 Champion, all reinforcing our position as a credible voice for equitable healthcare.

Education efforts remained a cornerstone of our offerings through our webinar series featuring recognized experts. Sessions addressed overcoming healthcare access barriers, navigating SSDI and SSI programs, understanding open enrollment, and the Inflation Reduction Act’s impact on Medicare. Each presentation provided actionable steps that helped patients and caregivers make informed decisions about their care.

As we look ahead, our focus remains on breaking down barriers that prevent access to timely, affordable, and person-centered care. We move forward with purpose and clarity, knowing that with every conversation and every improvement, we are shaping a future where healthcare access is defined by need, not circumstance.

Through national media discussions and our collaborative network, we elevated key issues such as the essential role of specialty pharmacies in managing complex conditions, how patient assistance organizations can reach underserved populations, and how community partnerships drive better access to care. Industry innovation rooted in a holistic, person-centered approach remained a central theme, emphasizing the value of addressing both medical and social determinants of health.

Advocacy and collaboration continued to strengthen our impact. We joined the National

Thank you for supporting this work and sharing our commitment to the patients and families we serve across the country.

With gratitude,

Tiara Green, MSEd President

Mitch Mula Board Chair IM PACT RE P O RT 2024 / 3

Impact of your dollars.

SERVING ALL US STATES & TERRITORIES

4,580 PATIENTS SERVED

TOP STATES SERVED

While copays are often the first thing people think of when it comes to patient assistance, the majority of support goes far beyond that. In fact, 77% of assistance provided was utilized for more than just copays, showing that true access to care isn’t just about the cost of a single doctor’s visit, but about removing the broader financial barriers that can prevent patients from getting the treatment they need.

Copays: 23% Premiums: 62% Travel Expenses: 3% Other medical Expenses: 12%

20 NEW PROGRAMS ESTABLISHED Alpha Mannosidosis Batten Disease Bone Sarcomas Chronic Lymphocytic Leukemia Diffuse Large B-Cell Lymphoma Eosinophilic Esophagitis Epidermolysis Bullosa Facioscapulohumeral Muscular Dystrophy Follicular Lymphoma Gangliosidosis 4 / ACCESSIA H EALTH ®

Krabbe Disease Limb-Girdle Muscular Dystrophy Lipodystrophy Mantle Cell Lymphoma Myotonic Dystrophy Niemann-Pick Disease Oculopharyngeal Muscular Dystrophy Phenylketonuria Sarcoidosis Soft Tissue Sarcomas

109 Patient

Programs Covering 660 Conditions

PATIENT ASSISTANCE 2.38 Average Household Size 62 Average Patient Age $52,506 Average Household Income $3,521 Average Accessia Health Assistance

CUSTOMER SUPPORT 5:56 Average Call Duration

The conversations we have with patients are often complex, and this reflects the level of care it takes to understand their situations, guide them through next steps, and ensure every detail is addressed correctly.

24,435 Calls Answered

“

I always expected to be able to work and provide for myself. Health circumstances changed that. I live on Social Security, and am so very grateful to Accessia Health for providing financial assistance for my health insurance premiums. Thank you to all who donate to Accessia Health to provide help.

- debrajoy

39,865 Documents Processed

ENGAGEMENT 1,807 Online Chat Conversations, Averaging 4.95 Conversations Per Day 199,000 Unique Website Visitors, a 70% Increase from 2023 4 Educational Webinars Hosted with 800+ Registrants 38 Local and National Conferences Attended and Participating in 9 Panel Sessions IM PACT RE P O RT 2024 / 5

Impact of your dollars.

Our Advocating for Chronic Conditions, Entitlements and Social Services (A.C.C.E.S.S) program provides personalized advocacy for patients facing legal and administrative barriers that stand between them and their disability benefits.

Our attorneys work to ensure that individuals not only receive the benefits they qualify for but also understand their rights throughout the process. Behind every case is a story of persistence, trust, and renewed hope— proof that access is not just about eligibility, but about empowerment.

40 cases managed through the program with an 85% approval success rate.

709 new callers seeking assistance—a 61% increase over the previous year.

The largest award totaled $69,600 in back pay for one patient. $174,000 in benefits secured for patients, averaging $15,800 per approved case.

20 months average case completion time.

14 cases fully resolved by year-end.

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Donors

Because of you, more patients navigated their healthcare journeys with hope and dignity this past year. Your commitment helped us expand vital patient programs, strengthen educational resources, and deliver critical support to individuals facing rare and chronic conditions. Every gift you make directly impacts lives, opening doors to care that would otherwise remain out of reach.

Andy Weiss Anna Brown Barbara Cope Benevity Community Impact Fund Brenda Peter Brian & Debra Fink Brian Landry Craig Martin Elizabeth Brill Eric Conners Frank Donovan FrontStream Workplace Philanthropy Gary & Mickey James Give Lively Foundation Glen A Grimme Gregg Olsen Harold or Marie Fracchia Honeywell International Charity Matching List represents donations received Jan-Dec 2024

Jane Zeller Jeannette Nurse Jeengle John Stevenson Joseph Taylor Julia Gales Karen Williams Kathleen Seeman Kim Morgan Lamont Brown Lisa Perry Lud Kimbrough Marita Mathews Maximus Foundation Michael Holdren Monique Shepperson Neela Chari Network For Good Nicholas Frangiudakis Patrick & Deborah Galaska PayPal Giving Fund Peggy Trent

Peter White Robert Glenn Ronald Brown Ronald Trimble Russell E Phillips Jr Scott Rhodes Steve Guion Susanne Wheeler Syed Ali Terry Staletovich Truist UKOGF Foundation United Way Dallas Vernon Kingsbury William Northcott

IN HONOR OF Beverly Morgan IN MEMORY OF Gail Fracchia

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Suzanne’s Story: A Lifeline When It Mattered Most After years of caring for others, Suzanne relies on Accessia Health to manage her chronic illnesses and continue living a life full of purpose and community.

For nearly four decades, Suzanne Trapani has been caring for others as a registered nurse. However, life began to demand that she turn that care inward. After being diagnosed with Alpha 1 Antitrypsin Deficiency in 2012, and then Eosinophilic Asthma in 2023, Suzanne had to step away from direct patient care to endure the highs and lows of multiple respiratory illnesses.

With help from Accessia Health, she is sharing her story of finding purpose in everyday activities without worrying about how she will cover her next prescription refill.

Alpha-1 Antitrypsin Deficiency (AATD) is a genetic condition that can cause damage to the lungs and/or the liver. There is no cure for Alpha-1, but some symptoms can be managed with treatments such as augmentation therapy and certain medications for Chronic Obstructive Pulmonary Disease (COPD).

Looking back, Suzanne can’t recall a time when she didn’t experience respiratory distress. And yet, despite this lifelong struggle, getting the diagnosis of both Alpha-1 and Eosinophilic Asthma was a lot to comprehend.

“I think I had [AATD] as an infant because it’s a genetic disorder. [But as I got older], my energy levels were decreasing, and I was getting more frequent respiratory illnesses [before the discovery of] Eosinophilic Asthma in 2023. The impact on my daily life has been huge. I had to stop working full-time around sick patients, which took a toll on me financially.”

Finding A New Normal

Taking a step back from doing what she loved was initially hard on Suzanne. After going through a period of grief over what was lost physically and emotionally, she stepped back up to the plate and got involved with support systems for individuals with AATD and other chronic illnesses. Outside of being a fierce chronic disease advocate, Suzanne prides herself on being involved with a number of cultural organizations including the American Legion, a local police volunteer group, and a small group at her church.

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“I [love] being involved where I can, like volunteering. It’s so good for a chronically ill person to get out and do stuff that forces you to not think about [your illness.] Suzanne said. “Honestly, most people don’t know much about my conditions. To most, I look healthy. However, what does

someone with a chronic illness really look like? They don’t see me on the days—or weeks—when I have a simple respiratory virus [that] leaves me homebound.”

Suzanne’s case was referred to Accessia Health’s Alpha-1 Antitrypsin Deficiency patient program.

Thanks to the financial assistance she now receives to help cover her medical insurance and prescription copays, she can continue focusing on her work in the community without the financial burden that can come with AATD treatment.

“I purchase my own medical insurance through the marketplace, and the financial assistance has been such a blessing—it means I don’t have to choose between groceries and prescriptions.”

Barriers To Care with a Chronic Disease

Not only did Suzanne have to change her lifestyle at the drop of a hat, but it soon became clear that explaining her condition and symptoms to healthcare professionals wouldn’t always be easy.

“Unfortunately, women are often dismissed when you tell a physician about extreme exhaustion. I have had to ‘fire’ doctors because their attitude towards me felt dismissive, and insurance companies have denied prescriptions that they [approved] the year before because a doctor would say I no longer qualify for the medication.”

"The financial assistance means I don’t have to choose between groceries and prescriptions—it lets me focus on living, not just surviving."

Over 90% of those with AATD are undiagnosed or misdiagnosed, often due to lack of provider awareness and inconsistent screening practices. Lack of familiarity with AATD treatments among providers and insufficient education modules are major obstacles; with provider confidence in diagnosing AATD increasing from 7.7% to 19.4% only after educational intervention.

A Lesson in Gratitude

Thinking back to what has helped her the most during her healthcare journey, Suzanne reflects on a book that encouraged her to enjoy the little things – no matter what trials and tribulations her disease may bring.

“I bought a book years ago called ‘Attitudes of Gratitude’ and began writing down the good things that happened each day. Now, even on a rough day, I can see the blessings in the fact that I have my dogs snuggling with me, and maybe a nice pot of homemade soup in the fridge.”

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Financials

CONSOLIDATED STATEMENT OF FINANCIAL POSITION*

10.2% Management 6.2% Fundraising and Fundraising

83.7% Program Assistance

*Data is for the 12-month period: April 1, 2024 through March 31, 2025.

Full IRS 990 and Financial Statements are available at AccessiaHealth.org 1 0 / ACCESSIA H EALT H ®

ASSETS Total Current Assets $ 36,382,696 Total Property and Equipment $ 1,577,099 Total Other Assets $ 78,656,207

Total Assets $ 116,616,002

Total Liabilities $ 1,003,696

NET ASSETS Without Donor Restrictions $ 31,127,553 With Donor Restrictions $ 84,484,753

Total Net Assets $ 115,612,306 Total Liabilities and Net Assets $ 116,616,002

Leadership

Tiara Green, MSEd President

Anna Brown EVP, Marketing and Communications Lamont Brown, MBA EVP, Finance and Administration James Johnson EVP, Operations

Jennifer Noonan, MSN, RN VP, Clinical Strategy and Patient Engagement Ashley Lee Director, Strategic Initiatives Kristin Shifflett Director, Patient Services Amanda Kinchlow Human Resources Manager

It is impossible to overstate the relief and security this has brought to my life.

Alan Wood, MA EVP, Development and Growth

Board of Directors

Mitch Mula Chair

Brian Landry Vice Chair and Secretary Russell E. Phillips Jr., CPA, CVA, MAFF Treasurer

“

From the moment I connected with them, Accessia Health’s attorneys provided clear guidance on complex legal issues and offered compassionate support for the difficult emotional aspects of the case. Knowing I had professional representation, specifically tailored to my situation, made all the difference and helped me manage the immense stress.

- Natalia Bushyager

Mark Harris Foundation Board Vice Chair and Secretary Caitlin Donovan Foundation Board Treasurer Jenn Kerfoot Foundation Board Member

Brian L Fink, JD Lud Kimbrough, MBA Lee Smith

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Person-Centered Services

1 in 4

adults say that in the past 12 months they have skipped or postponed getting health care they needed because of the cost.

Copay Assistance

Other Medical Expenses

Nearly 50% Insurance Premiums

1 in 10

Healthcare Education

Free Disabilty Claims Support 1 2 / ACCESSIA H EALT H ®

adults say they have cut pills in half or skipped doses of medicine in the last year because of the cost.

Medical Travel Costs

Case Management

of adults would be unable to pay an unexpected medical bill of $500 in full without going into debt.

48%

of insured adults worried about affording their monthly insurance premiums.

KFF, 2024

SHIFTING PATIENT NEEDS ARE MOVING BEYOND COPAY ASSISTANCE Your Assistance. Your Choice. is our financial assistancre model which reflects a more holistic way of supporting patients and offering them flexibility over the healthcare expenses that are most important to them.

Instead of dividing financial assistance into fixed amounts for travel, medical expenses, insurance premiums, and medication copays, recipents receive one total award they can use where it is needed most.

This flexibility allows individuals to manage real-world costs in a way that aligns with their own care journey, giving individuals greater control and a more personalized experience.

“

Accessia Health has allowed me to receive my medication that I would not be able to afford monthly on my own. Without my primary immune specialty medication, I am sick and often in the hospital. Thank you for serving me and allowing me to stay healthy!

- M. Fall

Program Model Patient Receives One Annual Amount

Flexible Spending Based on Individual Needs

Funding May Be Used Cover Copays, Insurance Premiums, Medical Expenses, and/or Travel* IM PACT RE P O RT 2024 / 1 3

*travel costs capped at $500

Tabitha’s Story: A Lifeline When It Mattered Most After facing two life-altering cancer diagnoses, Tabitha relied on Accessia Health to continue life-saving treatment and regain peace of mind.

As a retired registered nurse, wife, and mother of three, Tabitha Gachiengu spent her career caring for others. But, in December 2017, her world was turned upside down when she was diagnosed with breast cancer. After years of supporting people through their own health journeys, she suddenly found herself on the other side – facing surgery, chemotherapy, and radiation.

Determined to focus on her recovery, Tabitha stepped away from her career to prioritize healing. With treatment behind her, she looked toward the future with hope, ready to begin five years of hormone therapy to help prevent cancer recurrence. Just as she began to reclaim a sense of normalcy, another unexpected challenge emerged. In 2019, additional testing confirmed that Tabitha had Chronic Myeloid Leukemia (CML) – a second, life-altering diagnosis.

“CML has humbled me [around those] with other health issues. I have more empathy when I meet people with chronic conditions and offer any knowledge or help more often than before.”

Understanding CML Chronic myeloid leukemia (CML), also known as chronic myelogenous leukemia, is a type of cancer that starts in certain blood-forming cells of the bone marrow. The leukemia cells grow and divide, building up in the bone marrow and spilling over into the blood. In time, the cells can also settle in other parts of the body, including the spleen. CML is a slow-growing leukemia, but can change into a fast-growing acute leukemia that’s hard to treat. Though this type of cancer doesn’t usually present symptoms immediately, it can be detected through a blood test.

Tabitha’s Journey

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Following her diagnosis, Tabitha was prescribed life-saving medication that came with a high copay. At first, her doctor’s office and insurance provider were able to help offset the cost, and her condition began to stabilize. Her medical team was pleased with her progress. However, after trying to wean off the CML medication in 2022, immature white blood cells flooded back into her system.

It was then that Tabitha learned that CML would be a life-long condition for her. The medication she once hoped to leave behind would now be a lifelong necessity.

In March 2024, Tabitha’s copay assistance was abruptly terminated, leaving her with just a few weeks to scramble for funding before she would have to pay for the medication out of pocket. During this time, her white blood cell count began to climb and she knew she would need to secure assistance another way before her condition worsened.

Tabitha began reaching out to organizations that might be able to help her afford her medication costs. That’s when she contacted Accessia Health. Although the CML program was at capacity at the time, she was placed on the program’s waitlist and she held on to hope for assistance.

Finding Relief with Accessia Health “May 25th, 2024, is the day I received the letter from Accessia Health, telling me there was an open spot for financial assistance. I had almost given up when the letter came, and to imagine I won’t have to worry about missing [medication] doses again was beyond my imagination.”

Though Tabitha’s story is unique to her, there are less than 200,000 cases (15% of all cancer diagnoses in adults) of CML reported each year. Due to its rarity, specialty medications are used to treat the condition – which can see high copay costs and difficulty with regular medication intake.

With Accessia Health’s support, Tabitha was able to resume her treatment without the overwhelming burden that her healthcare expenses had created. Over the next six months, her recovery continued, and for the first time, she and her husband could turn their focus on enjoying retirement and managing her health with confidence.

“Read about your condition and become fully informed. You are your first line of treatment. If people take your illness lightly, don’t waste time with them. If you find people that have your condition, invest your time in them and share questions and experiences as a means of learning, but do not take their experiences “To imagine I won’t have to worry about missing as yours. People experience rare and chronic health doses again was beyond my imagination. Accessia conditions uniquely.”

Health gave me my life back.”

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Accessia Health, a national charitable patient assistance organization, is dedicated to eliminating healthcare barriers for people with rare or chronic health conditions.

Comprehensive services include personalized case management, financial assistance, education, and legal aid support.

Our flexible funding model goes beyond copays, allowing individuals to pay for other essential medical expenses including insurance premiums, screening and diagnostics, therapy services, travel costs, and more.

We work to ensure that every individual has access to the care they need to lead a healthier life.

We speak health and human.® P.O. Box 5930 Midlothian, VA 800-366-7741 accessiahealth.org