Health and humanity – why holistic care must be a shared industry responsibility
Written by Tiara Green, president, Accessia Health
Estimated reading time: 8 minutes
Tabitha Gachiengu is a retired registered nurse, wife and mother of three who spent her life caring for others. After years of guiding people through their health journeys, she suddenly found herself on the other side of care.
When Tabitha was diagnosed with chronic myeloid leukemia (CML), the challenges she faced extended far beyond the doctor’s office. She was prescribed life-saving medication, but when her co-pay assistance was abruptly terminated, she had just weeks to find an alternative source of funding, or face paying out of pocket. As her white blood cell count began to rise, so did the urgency. She knew that without support her condition could worsen rapidly.
With the support ofAccessia Health, Tabitha was able to continue her treatment without the crushing financial burden that had threatened her stability. Her recovery progressed, and for the first time in months, she and her husband could focus on enjoying retirement and managing her health with confidence.
What she was facing outside the clinic had just as much impact on her well-being as the treatment itself. These in-between spaces—appointments, diagnoses and paychecks—are where many people face their greatest hurdles: navigating insurance, affording treatment, traveling to specialists, or simply making ends meet.
Our organisation meets people in those gaps, supporting individuals not just as they manage their condition, but as whole people.
For us, holistic care is a necessary shift in how we define access and equity. Our programme model addresses the full scope of patient needs, but we know that sustainable, scalable impact requires more than nonprofit intervention. It calls for collective commitment from across the industry to deliver support that is more equitable, more effective, more relevant—in short, support that is human.
The cost of care isn’t just financial
Accessia Health provides critical financial support to people living with rare and chronic conditions—helping cover co-pays, insurance premiums, travel expenses and other healthcare costs for people whose health, and often their livelihoods, depend on consistent access to care.
But financial strain is only part of the picture. According to theRDDC & NORD 2024 Survey Results, many patients face additional barriers that impact their ability to receive and sustain care:
- 45% reported emotional and psychological burdens, such as stress, anxiety and hopelessness, as major obstacles to continuing care
- 21% delayed or skipped care due to the cost or lack of access to transportation
- 10% expressed concern about navigating forms or understanding care instructions
Beyond the numbers, many people living with rare diseases or chronic conditions face compounding challenges: isolation, low health literacy, language barriers and logistical obstacles that, if left unaddressed, can become just as detrimental as the illness itself. These realities underscore why a truly equitable model of care must look beyond the prescription pad and into the full context of a patient’s life.
What holistic care looks like in practice
We’ve taken a deliberate step beyond the traditional model of financial assistance. Our service model is designed to identify and address the hidden barriers people face every day:
- transportation and lodging assistance for those who must travel for specialty care
- counselling and therapy services
- peer education and navigation to help interpret coverage policies and treatment pathways
- tailored support for people facing overlapping social and clinical challenges
These efforts are rooted in more than 35 years of listening to our community. Our support staff are a lifeline for those we serve—they advocate, troubleshoot and build trust with people who often feel forgotten. And of course, the financial support we are able to provide means families don’t have to choose between affording their rent or their life-saving medication.
We see the results of these efforts firsthand: people are more likely to adhere to treatment, experience improved quality of life, and stay engaged in their care. These are measurable markers of success, and they’re attainable when we treat people, not just conditions.
We’ve learned that to truly support the rare disease community, holistic support must not be treated as an optional add-on.
A collective responsibility
Accessia Health and other nonprofits are working to meet the holistic needs of people living with rare diseases, but advancing holistic care requires broader systems change. And systems change requires cross-sector partnership. This responsibility cannot rest on nonprofit shoulders alone.
The need is only growing. In the US, if current proposed Medicaid cuts are implemented and premium support withdrawn, the coverage gap will widen even further, and more people will rely on charitable organisations to help pay for their healthcare costs.
However, we know that holistic care works. Models that integrate transitional care, remote monitoring, bundled payment systems and specialty pharmacy services have shown remarkable results. These approaches have been linked to:
- a 78% reduction in hospital admissions1
- an 86% reduction in readmissions2
- more than 70% fewer emergency room visits3
- a 30% increase in medication adherence among high-risk individuals4
- and over $1,300 in savings per patient, per year5
These outcomes make clear that whole-person care isn’t just compassionate, it’s cost-effective. But without deeper engagement from pharma, policymakers and regulators, we risk leaving the most vulnerable behind.
Industry has the insight, the infrastructure and the influence to embed holistic support into the standard of care, which can take many forms:
- pharmaceutical companies funding support services in parallel with access programmes
- regulators recognising wraparound care in patient experience and outcome frameworks
- policy leaders broadening definitions of medical necessity to include transport, housing, and caregiving
- data partners evaluating the long-term value of holistic support through outcomes-based research
We’ve seen firsthand how partnerships with health systems, advocacy partners and public sector leaders can accelerate impact. But we need more champions. This is not just a call to help, it’s a call to lead.
Redefining what “access” truly means
Too often, “access” is defined by whether a treatment is available. But for the rare disease community, access means being able to actually utilise that treatment without delay, without debt and without unnecessary barriers.
It means having the right support in place after the prescription is filled. It means being recognised not only as a patient, but as a person with real world needs. We see the potential for a future where no one is left behind because the system wasn’t built with them in mind. But we cannot get there alone.
To our partners in pharma, policy and beyond: now is the moment to redefine what care truly means. Holistic support must be the standard, not the rare exception.
Connect with Tiara
References
[1] Integrated Case Management (2017): Reduced unplanned hospital admissions by 58.4% (based on before and after results)- https://pmc.ncbi.nlm.nih.gov/articles/PMC5624062/
Remote Patient Monitoring (2021): RPM and virtual care cut hospitalizations by 78% in cancer patients with COVID-19 (2.8% vs. 13%), lowering acute care use overall. – https://pmc.ncbi.nlm.nih.gov/articles/PMC8457804/
[2] “A cohort study in 2018 analyzed all eligible Medicare discharges between 2013 and 2015 and found that between 31 and 60 days after discharge, TCM services… at the University of Kentucky (N=1884 patients) found an 86.6% drop in readmission odds among patients receiving TCM services.” https://www.mgma.com/articles/transitional-care-management-improves-patient-outcomes
[3] Integrated Case Management (2017): Reduced ER visits by 73.5% in patients with complex conditions. – https://pmc.ncbi.nlm.nih.gov/articles/PMC5624062/
[4] “Phoenix Children’s Hospital, which utilizes a specialty pharmacy program, reported a 30% increase in medication adherence among CF patients and a reduced disease burden compared to other markets. “ – https://www.pharmexec.com/view/forging-brighter-future-rare-disease-outcomes-specialty-utilization
[5] Guided Care Model (2009): Delivered annual net savings of *$75,000 per nurse or $1,364 per patient*, based on reduced utilization and 2009 Medicare payment rates.- https://pubmed.ncbi.nlm.nih.gov/19670959/
“A cohort study in 2018 analyzed all eligible Medicare discharges between 2013 and 2015 and found that between 31 and 60 days after discharge, TCM services: *decreased healthcare spending by 11%*. – https://www.mgma.com/articles/transitional-care-management-improves-patient-outcomes
Coordinated Care Demonstration (2014): In a high-risk subgroup, $291 per member per month (PBPM) in Medicare savings exceeded the $139 PBPM program fee—demonstrating cost-effectiveness of nonprofit-led coordinated care. – *not using this stat because of the non-profit aspect, just wanted to share* – https://www.cms.gov/priorities/innovation/files/reports/medicarecoordinatedcaredemortc.pdf
in the loop lets you stay informed with all the latest issues from the world of RARE. To access more in the loop articles click below.
