2023 Impact Report
We speak health and human.®
Dear Friends and Supporters,
I am beyond proud of the remarkable strides we have made in our mission to help those living with a rare or chronic condition. 2023 was a year marked by growth, innovation, and a deepened commitment to our patients and their families.
Our services grew with the addition of 14 newly, established patient programs. This expansion allows us to touch more lives and provide critical support to individuals managing chronic conditions. We also introduced the Your Assistance, Your Choice program model, empowering patients with the ability to choose how they utilize their assistance. Our person-centered approach reflects a deep understanding of the unique needs each person faces in their healthcare journey. Finally, we enhanced our technology services with the launch of our website chat feature.
The Patient and Caregiver Advisory Committee met over the year and helped shape our webinar offerings and understand their journey. This collaborative approach ensures that our work remains deeply rooted in the needs of those we serve. Our educational offerings expanded as we hosted our webinar series, Amplify Your Voice, Control Your Care™, and provided
more comprehensive resources to the community through informative blogs, videos, and our case managements services.
Our commitment to excellence earned us several recognitions including the Great Nonprofits 2023 Top-Rated Charity; Charity Navigator’s 4-star rating, Candid’s 2023 Platinum Transparency recognition; and five awards for our healthcare marketing campaigns. These recognitions represent the high quality and impact of our work.
Team members attended and/or presented at over 35 conferences across the country, sharing our work and collaborating with industry leaders and patient advocacy organizations. We also had the privilege of supporting the local Richmond, Virginia community and volunteered with the Ronald McDonald House and supported a family for Christmas through Mercy Mall.
Our newly defined core values strengthened our organization’s culture and created a unified sense of purpose. Every team member contributed to the creation of our values which outline the principles that guide our work each and every day.
Our internship program with Virginia Commonwealth University offers aspiring healthcare leaders the chance to gain practical experience in the industry. Throughout the semester, interns work closely with the Accessia Health team on projects tailored to their specific career goals, offering a unique opportunity to develop skills and insights essential for their future in healthcare.
Everything we have accomplished in 2023 is a testament to the dedication of our team, and the support of our board members, donors, and partners.
As we move forward, Accessia Health remains committed to increasing access to care and promoting the need for improved health equity and equality. We
achieve this by advocating for policies that ensure equal access to quality care, collaborating with advocacy organizations and healthcare providers, and amplifying the voices of patients.
Together, we can build a future where quality healthcare is not a privilege, but a right that is accessible to all. With your continued support, I am confident that we can make strides towards a more equitable and just healthcare system.
Thank you for being an integral part of our journey as we continue making a difference in the lives of those we serve.
With heartfelt appreciation,
Tiara Green, MSEd President Mitch Mula Board Chair
Team members volunteer at Ronald McDonald House in Richmond, VA.
Leadership
Tiara Green, MSEd President
Mike Holdren
EVP, Technology
Lamont Brown
EVP, Finance & Administration
Craig Martin Head of Strategy
Dave Griffiths VP, Development
Jennifer Noonan, MSN, RN VP, Clinical Strategy & Patient Engagement
Anna Brown VP, Marketing & Communications
Kristin Shifflett Director, Operations
Ashley Lee Executive Project Manager
Board of Directors
Mitch Mula Chair
Brian Landry Vice Chair & Secretary
Russell E. Phillips Jr., CPA, CVA, MAFF Treasurer
Brian L Fink, JD
Lud Kimbrough, MBA
Lee Smith
Mark Harris Foundation Board Vice Chair & Secretary
Caitlin Donovan Foundation Board Treasurer
Jenn Kerfoot Foundation Board Member
Impact of your dollars.
PATIENT ASSISTANCE
AVERAGE HOUSEHOLD SIZE = 2
AVERAGE PATIENT AGE = 65
AVERAGE HOUSEHOLD INCOME = $44,404
AVERAGE ACCESSIA HEALTH ASSISTANCE = $3,672
PATIENTS SERVED = 6,075
60% of assistance provided was utilized for more than just copays.
Copays > 39%
Premiums > 39%
Travel Expenses > 12%
Other medical Expenses > 10%
14 NEW PROGRAMS ESTABLISHED
Asthma
Daily Living Support Fund
Heart Disease
MPS II (2)
MPS III (3)
MPS IV (4)
MPS VI (6)
Non-Small Cell Lung Cancer
Obesity
Oral Health Fund
Plasminogen Deficiency
Preventable Diseases Support
Stroke
Vision Health Fund
89 ESTABLISHED PATIENT PROGRAMS COVERING 398 DIAGNOSES Your Assistance, Your Choice program model launched, allowing patients to choose how they use their financial assistance.
TOP STATES SERVED
Florida
Texas
California
Pennsylvania
New
North
Ohio
Georgia
Michigan
Illinois
CUSTOMER SUPPORT
AVG CALL DURATION = 5:12
Our team invests time and attention to each call, ensuring thorough and meticulous handling.
CALLS ANSWERED = 22,306
DOCUMENTS PROCESSED = 36,550
WEBSITE CHAT LAUNCHED MAY 2023
975+ CHAT CONVERSATIONS HANDLED
"Because of your generous supporters, I’m still alive 20 years later. Thank you for giving me the beautiful gift of life.
Carrie’s Story
Carrie Choate is a 42-year-old pediatric physical therapist dedicated to helping children with special needs and rare diseases. She is an avid runner, fitness enthusiast, and mother to three children. But despite a fulfilling personal and professional life, her journey has been shaped by the challenges of living with Gaucher Disease Type 1, a diagnosis she received just six months after her first child was born.
Gaucher is a rare genetic disorder caused by a deficiency of an enzyme called glucocerebrosidase, which leads to the accumulation of fatty substances in the spleen, liver, and bone marrow. This buildup causes fatigue, severe bone pain, and enlargement of the spleen and liver. Although there is no cure for Gaucher, treatments are available to help manage symptoms and improve quality of life.
I was diagnosed at 28, six months after my first child was born. It took an extremely frustrating, and all-consuming six months to get a diagnosis, and without my own self-advocacy and perseverance, I might never have been diagnosed. Even today, I continue to struggle with chronic fatigue, severe joint pain, body aches, and the anxiety and stress associated with having a chronic condition. However, I am not one to give up and am constantly seeking new treatments and resources to help manage my symptoms, find the best care, and maintain my health, all while balancing a full-time job and raising a family.
I’ve been incredibly fortunate to have access to some of the best care, including my Gaucher specialist who is a geneticist. She helps me navigate the stressors that are associated with having a genetic disease, providing guidance and expert management of my treatment. Although she cannot cure me, she helps minimize my fear of the unknown, and, most importantly, encourages me to live a long, fulfilling, and happy life. Without my Gaucher specialist on my care team, I’m not sure I could manage my condition or function as well as I do now. She has been my rock.
Carrie and her husband, David
In addition to my specialist, my genetic counselor and case manager have also been invaluable assets. I can always email or call them with questions or concerns. Last but not least, I could not do this without my flexible, caring, and nurturing nurse. I spend a lot of time with her every other week and she makes my treatments less daunting and draining.
Beyond my clinical team, I have an incredible system of family and friends. They provide unconditional support and allow me to vent when I am having an off day or need extra help due to fatigue. Over the last 14 years of my journey, I have been connected with other people who also have Gaucher. It has been wonderful to talk through things with those who truly understand what I am going through. I can’t imagine managing both the emotional and financial stressors of this disease without such a strong support network.
“You have one life to live, so live it to the fullest within the parameters of where you are in your disease process. Keep advocating for yourself and stay connected in the community.”
In 2019, I did an interview in Boston with another member of the rare disease community and was informed about this incredible organization that helps alleviate the financial stress for rare disease patients. Without Accessia Health, I wouldn’t have been able to afford non-traditional healthcare expenses that my insurance didn’t cover but were necessary to manage my long-term symptoms. It’s been a huge stress relief to receive the assistance and support from Accessia Health.
Maintaining a consistent healthy lifestyle, including diet and exercise, is vital. I have always prioritized my health, even prior to my diagnosis. And while it’s important to stay active, you should also rest as much as you can, lean on others for support, and stay positive. Don’t give up on things that will help you manage stress and long-term symptoms. You must also be your own advocate and never lose hope. Most importantly: know that you are not alone. It took me many years to accept my diagnosis and seek help. No person should have to deal with any disease or chronic condition alone - there is always someone out there who is willing to help.
Carrie’s story of determination and resilience is a reminder that no one should have to face a rare disease or chronic condition alone. With the right support, people can find the strength to overcome even the toughest challenge. If you or someone you know is living with Gaucher, Accessia Health offers comprehensive support, including case management and financial assistance for your healthcare expenses.
"Without the financial assistance from Accessia Health, I couldn’t afford my medication. Their help is immeasurable and I shudder to think where I’d be without them.
Andrew Mark
A.C.C.E.S.S.® Program
Advocating for Chronic Conditions, Entitlements, and Social Services (A.C.C.E.S.S.) is a free disability legal aid program offered by Accessia Health for families facing specific chronic medical conditions. Our services are completely confidential and provided at no cost.
Navigating the complexities of healthcare can be overwhelming in the best of circumstances — but with our expertise on your side — we can help guide you through it. We’re here to provide legal aid and representation when it’s needed most.
Assisting patients nationwide with
• Disability Legal Aid
• Social Security Disability (SSDI) Claims
• Supplemental Security Income (SSI) Claims
A.C.C.E.S.S is funded solely by donations. Contributions allow us to expand and assist additonal individuals.
Currently, we provide assistance for the following conditions:
• Alpha-1
• CIDP
• Hemophilia and other related bleeding disorders
• Primary Immune Deficiency
• Pulmonary Fibrosis
A.C.C.E.S.S. Case Support Breakdown
61% APPROVAL RATE
(compared to US rate of 35%)
Our Program Attorneys have an excellent track record of success in securing SSDI benefits for our patients, more than doubling the national disability approval rate.
Immune Deficiency
The A.C.C.E.S.S Support Hotline has assisted 2,591 callers with their disability and legal aid questions.
“I
am living with a very rare blood disease called hereditary angioedema. Accessia Health has helped me and my family in many ways, taking the burden off by paying for medication, copay assistance, and travel assistance.”
Tammy Campbell
Donors
Your generosity in 2023 was instrumental to advancing our mission. Thanks to your support, we launched new patient programs, expanded our educational offerings, and provided life-saving assistance to those facing rare and chronic conditions. Contributions from our community allow us to continue breaking down barriers to care and improving health equity for all.
Amazon Smile
Amy Jackson
Anna Brown
Anne Foster
April Erickson
Ashley Lacewell
Ashley Shuler
Blackbaud Giving Fund
Brian Landry
Charles White
Christine Raby
Dan Korth
Daniel Wise
David Griffiths
Deborah Cearley
Elaine C Brown
Gary Bland
Gene & Mary Lou Balog
George W. Crozier
Gregg Olsen
Honeywell International
Charity Matching
Jane Zeller
Jeannette Nurse
Jeffrey Slivko
Jenn Kerfoot
Jim Berko
Jim Moore
John Stevenson
Joseph Park
Joseph Taylor
JS Deponte Jr.
Judith Harvell
Karen Williams
Katherine Crowe
Kathy Seeman
Kevin Hyatt
Kim Trawick
Lamont Brown
Laura Olsen
Leah Watts
Leslie McCarey
Loretta Holmes
Lud Kimbrough
Marita Mathews
Marta Ulloa
Martynov Oleg
Maximus Foundation
MedicoCX
Michael Holdren
Michele Dechert
Mitchell Mula
Network for Good
Peggy Trent
Richard Jones
Robert G Cavanaugh
Ronald Trimble
Rosanne Findon
Russ Phillips, Jr.
Ryan Singh
Sabrina Wiley
Sandeep Gupta
Scott & Terri Pease
Scott Rhodes
Sherry Leo
Susan Mazzone
Syed Ali
Terry M Staletovich
Tiara Green
Tracy Stewart
UKOGF Foundation
United Way Dallas
Vernon Kingsbury
Vivian Trainor
Volker Uhrig
William Northcott
IN HONOR OF Brian Barry
William Brown
The Berko Family
IN MEMORY OF Wendi Krappes
William Brown
List represents donations received Jan-Dec 2023
State Programs
For over two decades, we have partnered with state entities to improve access to care for people with rare or chronic health conditions, helping to address health disparities and improve outcomes for thousands of patients, while saving states millions of dollars.
Partnerships with state programs allow us to administer financial assistance and insurance case management programs for uninsured or underinsured individuals with specific health conditions such as HIV/AIDS, hemophilia, sickle cell disease, and cystic fibrosis.
ESTIMATED ANNUAL COST SAVINGS FOR STATE AGENCIES BETWEEN $500,000 - $650,000
As a partner in care with state entities, we assist patients in obtaining health insurance, and paying for health insurance premiums, medication copayments, office visits, and other health-related expenses.
Instead of spending funds on uninsured care, states invest in improving overall health and wellbeing of residents in their state.
We’re leading the charge to expand this model through a community-based approach that ensures all people have access to healthcare.
“Accessia Health has helped tremendously to make my son’s health insurance affordable and ensure that he receives the lifesaving medication he needs. Our family is very grateful to Accessia Health for their help!“
Tami W.
CONSOLIDATED STATEMENT OF FINANCIAL POSITION*
4.9% Fundraising
9.6% Management and Fundraising
85.5% Program Assistance
ASSETS
Total Current Assets $ 83,831,404 Total Property and Equipment $ 1,646,602
Total Other Assets $ 9,954,189 Total Assets $ 95,432,194 Total Liabilities $ 939,229
NET ASSETS Without Donor Restrictions $ 24,830,686 With Donor Restrictions $ 69,662,280
Total Net Assets $ 94,492,965
Total Liabilities and Net Assets $ 95,432,194
*Data is for the 12-month period: April 2023 through March 31, 2024. Full IRS 990 and Financial Statements will be available at AccessiaHealth.org in November 2024.
“I had to retire because of my health, which left me uninsured – Accessia Health’s patient assistance program saved my life.“
Kathleen Haduk
Core Values
In 2023, we unveiled our newly defined core values. These embody the essence of our mission, shaping the foundation upon which we build relationships, drive innovation, and achieve success. Our values were created to serve as the foundational framework that articulates our fundamental beliefs, guiding principles, and purpose. They are not just words; they are the guiding principles that define our culture and shape our commitment to providing the highest standard of care.
COMPASSION
Compassion is at the core of who we are – in the workplace and in our interactions with those we serve, promoting a culture of understanding and support.
ACCOUNTABILITY
Our commitment to accountability is unwavering when engaging with colleagues and those we serve. We prioritize responsibility, transparency, and communication to foster a culture of trust and integrity.
SERVICE
Our culture of teamwork and collaboration allows us to exceed expectations and provide exceptional service to our patients and the community at large.
PERSON-CENTERED
Individuals are not defined by their conditions or circumstances. We put people at the center of our decisions and empower them with the knowledge and assistance to achieve the best possible outcomes throughout their healthcare journey.
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 access to healthcare regardless of their background.
