Americans can’t afford their medications. About 25% leave prescriptions unfilled, split pills, or skip doses. Seniors face challenges covering non-Medicare services, including prescriptions. Even those with commercial health insurance are not immune. One-third of insured adults worry about affording their premiums, and 44% must meet increasingly high deductibles before insurance even kicks in. As a result, 41% of adults carry substantial medical debt.
At the same time, FDA approvals for therapeutics targeting rare diseases are on the rise, including those for cancer, Alzheimer’s, and many previously untreatable diseases. In fact, 54% of 2022’s novel drug approvals targeted rare diseases. They encompass groundbreaking therapies like the first acid sphingomyelinase deficiency treatment, a prurigo nodularis remedy, and an obstructive hypertrophic cardiomyopathy therapy. In 2023, the first enzyme replacement therapy for non-neurological alpha-mannosidosis effects gained early approval.
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Breakthroughs, though welcome, are staggeringly expensive. In fact, Hemgenix, a new treatment for hemophilia, is officially the most expensive drug in the world at $3.5 million annually, followed by Zynteglo for thalassemia at $2.8 million per dose, and Zokinvy for Hutchinson-Gilford progeria syndrome at $1.7 million.
Even medications for more common conditions can be cripplingly expensive.
Over the past decade, median annual prices for disease-modifying therapies for multiple sclerosis have surged by nearly $34,000, reaching a median price of almost $94,000. Some have witnessed price hikes of over 200%, with nine now exceeding $100,000. Rheumatoid arthritis patients face medical costs that average $12,500 annually, and over $36,000 for those prescribed a biologic. Those biologic disease-modifying antirheumatic drugs range from $25,000–$40,000 a year. Leqvio, a semiannual cholesterol-lowering injection, costs between $3,191 and $6,782 per dose.
In addition to financial challenges, patients with rare diseases encounter difficulties in accessing essential clinical services despite availability, and that combined with pressure from payers to lower care delivery costs has driven the rapid growth of ambulatory infusion centers.
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Ambulatory infusion centers are more accessible than hospitals because they are scattered geographically, unlike single-location hospitals in urban centers.
Infusion center settings allow medical professionals to closely monitor patients, improving adherence for complex conditions requiring infusions. Research indicates a 79% adherence rate for office-based infusions, compared to 74% at hospitals and 64% at home. Home or hospital-infused patients averaged four to five specialist visits, while infusion center-infused patients averaged 14, leading to better disease management and outcomes.
Administering specialty drugs through ambulatory infusion centers offers substantial cost savings. These settings can cut specialty medication administration expenses by 50% for major HCPS codes, which constitute a significant portion of specialty medical spending, reducing costs by $16,000 to $37,000 per privately insured patient annually for major conditions.
Those dealing with rare, complex, and chronic conditions need a new care model to ensure that they have access to lifesaving, transformative medications regardless of their insurance coverage, or lack of it.
Ambulatory infusion centers are increasingly providing that much-needed access, support and, increasingly, financial assistance. To offer a differentiated patient financial experience, some infusion centers have partnered with software companies to further enhance their service offerings. Such technology platforms utilize data and predictive analytics to flag patients in need and match them with relevant financial resources, including drug manufacturer copay assistance programs, foundation grants, government assistance, and more. These companies can streamline and automate what is often a manual, labor-intensive process, empowering staff to reach more patients and maximize cost-saving opportunities. By improving affordability, collaborations between ambulatory infusion centers and comprehensive software solution providers who automate financial navigation expand access to lifesaving drugs and increase the likelihood of treatment adherence and positive outcomes.
Progress comes at a price. Developing new medications and treatments for rare diseases takes years of research and deep pockets, but the human costs for real patients and their families, healthcare providers, and caretakers must be factored in as well.
Healthcare has traditionally been built around the convenience of the provider and not the patient. Worse, it tends to treat all patients the same regardless of the condition they are trying to manage. If we want to improve compliance, we have to make access, support, and most importantly financial assistance a priority.
Photo: cagkansayin, Getty Images
As Chief Executive Officer of TwelveStone Health Partners, Shane Reeves leads all aspects of the business, including product, marketing, sales, finance, and delivery strategy. Shane’s career began with the organization in 1994 when he joined the family business and worked his way up through every function in the company. Under Shane’s leadership, moving forward as TwelveStone, the organization has grown into a broad medical service company with a long list of clients across the entire care continuum.
