Many patients face significant challenges in accessing their specialty medications, which highlights the importance of pharmacy-deployed patient navigation programs designed to help resolve nonclinical, system-related barriers to care.
A recent survey found that just 4% of Americans can correctly define the 4 terms that determine their yearly personal expenditure for services under their health plan: deductible, co-pay, coinsurance, and out of pocket maximum.1
This high health plan illiteracy may explain why approximately 60% of insured adults reported problems using their health care coverage in 2023. Moreover, nearly half of those who experienced issues reported they were never able to resolve the problem to their satisfaction.2
These are nonclinical, system-related barriers to care, and they have a significant impact on patient outcomes. Recent research indicates that financial, relational, social, and environmental factors influence up to 80% of health outcomes.3
System-related challenges are compounded for patients who take specialty medications. Specialty drugs are expensive, have a more complex benefit structure, and follow strict payer utilization management parameters that complicate patients’ ability to access prescribed therapy. This article examines some of the challenges patients face in accessing their specialty medication and highlights the importance of pharmacy-deployed patient navigation programs designed to help patients resolve nonclinical, system-related barriers to care.
Financial pressures and an increasingly complex health care landscape create mounting problems for patients with special health care needs. Four in 10 Americans struggle with cost-related barriers to care. According to surveys by Kaiser Family Foundation and Cover My Meds, 51% of patients sacrifice medications, 43% sacrifice essentials, and 41% modify treatment plans to compensate for cost-related challenges.4,5
Although community-based, government, and pharma-administered programs are available to help patients overcome barriers, many patients report being unaware of financial and benefit management resources available to them.6 Recent research indicates that 80% of patients with a chronic health condition are unaware of pharma patient support programs related to their condition.7
In addition to a general lack of awareness, the application process for many government safety-net programs is time consuming, confusing, and generally difficult for applicants to navigate.8 The American health care system is also challenged by a growing lack of skilled health care workers, including social workers, who are often on the front lines of helping patients with health-system and social-related challenges. The problem is unlikely to abate soon as HRSA anticipates a national shortage of social workers of between 17,000 and 48,000 persons by 2030.9
Patient navigation services provide solutions to social- and system-related challenges while positively impacting health outcomes. Known as the father of patient navigation, Dr. Harold Freeman created the first patient navigation program for underserved patients with cancer in Harlem, New York in 1990.
The program focused on eliminating barriers to care and facilitating access to early diagnosis and treatment. After implementing the program, the 5-year survival rate for patients served at the clinic rose from 39% to 70%.10
Over the years the nature and scope of patient navigation services has evolved to encompass varying sites of care and different patient communities, providing support across the health care continuum. One journal recently defined patient navigation as, “Individualized assistance offered to patients, families, and caregivers to help overcome health care system barriers and facilitate timely access to quality health and psychosocial care.”11
Patient navigators include peer, medical, or non-medical professionals who act as liaisons providing patient education, emotional support, and access to community resources while helping resolve financial, insurance and other coverage issues.12
In November 2022, BioMatrix Specialty Pharmacy formalized a multi-disciplinary patient navigation program including members of the intake, clinical, and patient support teams to help bleeding disorder patients resolve nonclinical, health-system related barriers to care. The program is available at no cost to all members of the bleeding disorder community regardless of product, pharmacy, or insurance affiliation.13
A retrospective, 6-month study analyzed initial data from the program and was featured at the National Bleeding Disorders Foundation’s annual Bleeding Disorder Conference and the National Association for Specialty Pharmacy’s annual conference. Navigation challenges were grouped into 5 categories according to similarities: Insurance (drug denials, loss of coverage etc.), Premium and Enrollment Support, Social, Disability, and Financial. Data indicated the program was effective in helping resolve barriers to care.
Of 89 patients referred to the program, 60 had their issue successfully resolved, 27 are still in process at time of publication, and 2 cases remained unresolved. The program helped facilitate access to more than $90,000 in community-based 501c3 financial support.
A post navigation survey completed by patients enrolled in the program indicated that they felt their issue was listened to and understood, that their issue was resolved, that they would use the services again if needed, and that they would recommend the service to others.14
“We are very pleased with the initial data from our patient navigation program,” said Kimberly Epps, BioMatrix chief clinical officer and vice president of Bleeding Disorders. “The health care landscape continues to grow more complex, and this program has allowed us to more effectively help bleeding disorder patients resolve real world problems that can impede timely access to care.”
Specialty pharmacy is a niche industry whose highly focused clinical and administrative competencies support specific patient communities and their health stakeholders to execute complex, often persistent treatment plans. Applying these competencies to formalize patient navigation services can add significant value to any specialty pharmacy program.
When deployed at the pharmacy level, patient navigation services provide value beyond drug dispensation by helping patients resolve system- and social-related barriers, secure timely access to prescribed therapy, and provide linkage to resources across our fragmented health care landscape.
1. Mangan, Dan. CNBC. (2016). Many Americans don’t know much about health insurance – and it will cost them. https://www.cnbc.com/2016/11/04/many-americans-dont-know-much-about-health-insurance--and-it-will-cost-them.html
2. Kaiser Family Foundation. (2023). KFF survey of consumer experiences with health insurance. https://www.kff.org/private-insurance/poll-finding/kff-survey-of-consumer-experiences-with-health-insurance/
3. CoverMyMeds. (2022). 2022 Medication Access Report. https://insights.covermymeds.com/research-and-analysis/industry-reports/2022-medication-access-report
4. Pestaina, K., Montero, A., Lopes, L., Valdes, I., Kirzinger, A., Brodie, M. (2023). KFF survey of consumer experiences with health insurance. https://www.kff.org/private-insurance/poll-finding/kff-survey-of-consumer-experiences-with-health-insurance/
5. Beardsley, J, H. (2022). Cash or bust: why discount cards could be key to medication adherence. https://insights.covermymeds.com/healthcare-technology/prescription-cash-price/cash-or-bust-why-discount-cards-could-be-key-to-medication-adherence
6. CoverMyMeds. (2021). 2021medication access report complex care & specialty edition. https://assets.ctfassets.net/70w6ftfzv4je/5YleoJtNE72YAzw5QmQVWv/4035ed1aa92ed82ce8aefaade5e1adc4/CMM_183103_MedicationAccessReport21_SpecialtyEdition__1_.pdf
7. Bulik Snyder, B. (2020). Speak up, pharma: patients don’t know about your support services, survey says. https://www.fiercepharma.com/marketing/majority-patents-want-pharma-support-services-but-awareness-programs-still-low-survey
8. McDaniel, M., Karpman, M., Kenney, G., Hahn, H., Pratt, E. (2023). Customer service experiences and enrollment difficulties vary widely across safety net programs.
9. HRSA. ND., Health workforce projections: https://bhw.hrsa.gov/sites/default/files/bureau-health-workforce/data-research/mental-health-social-workers.pdf
10. Freeman, H., Rodriguez, R., (2011). The history and principles of patient navigation. Cancer. 2011 Aug; 117(15 0): 3539–3542. doi: 10.1002/cncr.26262
11. Blackley, K., Burriss, H., Cantril, C., Kline R., Pratt-Chapman M., Rocque G., Rohan, E., Shulman, L. (2019). Patient navigation in cancer: The business case to support clinical needs. Journal of Oncology Practice. 15,11 585-590. DOI: 10.1200/JOP.19.00230.
12. McBrien KA., Ivers N., Barnieh L., Bailey JJ., Lorenzetti DL., Nicholas D., Tonelli M., Hemmelgarn B., Lewanczuk R., Edwards A., Braun T., Manns B. (2018). Patient navigators for people with chronic disease: A systematic review. PLoS One. 2018 Feb 20;13(2):e0191980. DOI: 10.1371/journal.pone.0191980.
13. BioMatrix Specialty Pharmacy. (2023). Bleeding disorders patient navigation. https://www.biomatrixsprx.com/bleeding-disorders-patient-navigation
14. Lindhorst, J., Smoak, S., Wilbert, B., King, B., Epps, K. (2023). Effectiveness of patient navigation in resolving health-system related barriers to care for patients with bleeding disorders.