Transforming patient support for people living with rare diseases
Written by Tiara Green, president, Accessia Health
It’s no surprise that the financial burden for those struggling with a rare disease is immense. In fact, according to a study led by the National Institutes of Health’s National Center for Advancing Translational Sciences (NCATS)1, healthcare costs can be as much as three to five times higher for individuals with a rare disease than those without. Outside of the financial burden, patients wrestle with navigating a complex healthcare system, understanding what resources are available and shouldering the weight of the disease resulting in mental health challenges and loss in quality of life.
At Accessia Health, we help individuals who are facing hard choices between spending limited funds on medication or food for their families. That is a choice that no one should have to face. Historically, charitable patient assistance programmes (PAPs) primarily helped pay for medication expenses, however, we recognise that people with rare and chronic conditions have complex needs, requiring far more than traditional medication copay support.
More than financial assistance
As healthcare needs evolve, so must financial assistance efforts. In addition to funding, patients with rare diseases need tailored resources, such as case managers and legal aid, to help them access the proper benefits and get the support they need.
Accessia Health steps in to provide a holistic approach to patient assistance that addresses the diverse needs of individuals with rare and chronic conditions. Through our “Your Assistance, Your Choice” programme model, we are empowering individuals to allocate funds for a range of healthcare expenses that go beyond medication or copay support. This gives people the flexibility to cover essential costs like diagnostic testing, durable medical equipment, lodging, and transportation, which are vital for continuity in their healthcare journey.
In addition to financial assistance, Accessia Health offers free legal aid support for Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) claims and case management services. Through the Advocating for Chronic Conditions, Entitlements and Social Services (A.C.C.E.S.S®) programme, our attorneys help secure disability benefits through SSDI and SSI for eligible individuals. We also offer educational resources and advocacy assistance, helping individuals understand their conditions, navigate complex insurance requirements and make informed healthcare decisions.
When people have the skills, knowledge and resources required to navigate the healthcare system, they are more likely to adhere to treatment plans and become an active participant in their own health journey—leading to better outcomes.
Real stories, real impact
Accessia Health’s impact is brought to life through the stories of those we serve. 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. Despite leading 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. According to Carrie, it took six exhausting and frustrating months to receive a diagnosis and without her persistence and self-advocacy, she may never have been diagnosed at all. Even now, she battles chronic fatigue, severe joint pain, body aches, and the anxiety and stress that come with living with a chronic condition. Yet, she continues to persevere.
Carrie says that without the organisation, she couldn’t have afforded the non-traditional healthcare expenses that her insurance didn’t cover but were necessary to manage her long-term symptoms. In her words, “It’s been a huge stress relief to receive the assistance and support from Accessia Health.”
Carrie’s story of determination and resilience is a reminder that no one should face a rare disease or chronic condition alone. With the right support, people can find the strength to navigate—even overcome—the toughest challenges.
Learn more and apply
With innovative approaches to financial support through organisations like Accessia Health, underserved individuals battling rare and chronic health conditions now have access to life-saving support that is tailored to their specific needs.
To learn more about Accessia Health’s 90+ disease programmes and apply, visit accessiahealth.org today.
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