From the Infusion Chair to the System Level: What Nearly Losing My Life Taught Me About Site-of-Care Decisions

In 2018, I had a near fatal incident while asleep at home. An infection related to my immune deficiency caused an abscess in my neck to swell until it began closing my airway. My airway narrowed to less than a few millimeters. If my wife had not been there to call for help, I would not be alive today.

I had been diagnosed more than a decade earlier with hyper IgM syndrome, a rare immune deficiency that leaves patients vulnerable to serious, sometimes fatal infections. My immunologist had recommended lifelong intravenous immune globulin (IVIG) therapy as early as 2006.

I hesitated. As a pharmacist, I understood how IVIG products are produced and the risks that come with any biologic therapy. I worried about adverse reactions and how my immune system would respond to a product harvested from human plasma donors. I worried about committing to lifelong monthly infusions. And like many patients—especially those who are familiar with the health care system—I delayed care longer than I should have.

That near-fatal experience changed everything.

I began IVIG therapy not just as a pharmacist, but as a patient who finally understood the stakes. Sitting in the infusion chair reshaped how I think about infusion care delivery, and it fundamentally altered how I now view site-of-care decisions across the health care system.

Even When You Know the Health Care System, It Can Still Impede You

Before joining Hawaii Specialty Pharmacy, I spent years working in the health plan industry. I understood benefit design, formulary management, exclusivity contracts, medical billing processes, and network dynamics. I knew the levers and buttons. I knew the verbiage and trigger words. And yet, when I became an IVIG patient, I still struggled to access the right care in the right setting.

Because of payor restrictions and exclusivity contracts with specialty pharmacies that did not provide infusion services locally, I was repeatedly directed to hospital outpatient infusion centers for treatment. In some cases, it took months of advocacy to avoid that default pathway of dealing with the overwhelmed hospital infusion centers. At one point, I went without therapy for nearly 3 months while trying to navigate access barriers.

For an immunocompromised patient, this is not just inconvenient; it can mean the difference between life or death. IVIG patients typically receive treatment when their immunoglobulin levels are at their lowest. Sending low-acuity, immunocompromised patients into overcrowded hospital environments exposes them to unnecessary nosocomial infection risks at their most vulnerable moments.

This is not a hypothetical concern. I experienced it firsthand. Although I was receiving my IVIG infusions in the hospital, I would still experience upper respiratory infections from time to time. Once I transitioned to an ambulatory infusion setting supported by a specialty pharmacy team, those issues stopped. In fact, traveling through crowded airports and attending busy conferences were not an issue since my IVIG treatments were working the way they should.

That experience forced a difficult realization: if navigating site of care was this hard for me, how challenging must it feel for patients without health care literacy, professional training, or the wherewithal to self-advocate?

Site of Care Optimization Is Not Just a Cost Decision

Site-of-care optimization decisions are often discussed through the lens of cost, but they also reflect broader considerations around clinical appropriateness, patient experience, and health care system capacity. Hospital outpatient infusion centers play a critical role in infusion care, particularly for patients with higher acuity needs, complex comorbidities, or individualized advanced monitoring. For many high-acuity patients, hospital-based infusions are not only appropriate, but medically necessary.

At the same time, not every infusion patient requires hospital-level resources for every treatment. Many patients receiving chronic infusion therapies are clinically stable and may be appropriate candidates for alternative care settings when supported by their care team and treatment plan.

In markets where ambulatory infusion infrastructure is limited or underutilized, patients may still be routed into hospital outpatient infusion centers by default. This can have system-wide implications:

• Hospital outpatient infusion centers often carry higher total costs than ambulatory infusion settings
• Patients may experience higher out-of-pocket expenses depending on benefit design
• Hospital capacity may be strained by low-acuity patient volume
• Access delays can occur when higher-acuity patient needs compete for limited resources

Ambulatory infusion suites and specialty pharmacy–supported care models can serve as an important complement to augment hospital-based care, offering additional options for patients whose clinical needs, physician judgment, and benefit structure support treatment outside the hospital setting. When used appropriately, these alternative sites of care can help strengthen health care system capacity, support patient convenience and compliance, and align care delivery with individual treatment needs.

Site of care optimization should not be viewed as a purely logistical consideration. It is a strategic decision that benefits from thoughtful collaboration among payors, providers, hospitals, and specialty pharmacy partners.

Specialty Pharmacy and Care Coordination

Becoming an infusion patient reinforced what I now believe deeply as a pharmacy leader: specialty pharmacy is not simply a dispensing function of high-cost medications.

Specialty infusion providers help coordinate care because they sit at the intersection of payors, providers, infusion staff, and patients. That role becomes especially critical for complex therapies like IVIG.

Effective specialty infusion support includes benefit verification and prior authorization navigation; site-of-care coordination and scheduling; patient education and expectation setting; side effect monitoring and infusion management; financial assistance and copay support, to those who qualify; and ongoing communication across stakeholders.

Much of this work happens behind the scenes. Providers and payors may never see the administrative level of effort required to overcome access barriers, manage exclusivity constraints, or keep patient’s adherent and supported over time.

But patients feel the difference. In ambulatory infusion settings supported by specialty pharmacy providers, care can often become more personal and proactive. Staff know patients by name. They understand their histories. They notice changes. That continuity builds trust—and trust improves communication, adherence, and outcomes.

Patient Choice Must Be Part of the Equation

One of the most troubling lessons from my own journey is how few patients realize they have any choice at all. Site-of-care decisions can often be presented as foregone conclusions, shaped by network design, referral patterns, and contractual considerations rather than clinical appropriateness. Unfortunately, patients may not always be told that alternatives exist, or that they have the right to advocate for them.

From a payor perspective, preserving patient choice does not require abandoning network strategy. It requires building pathways that allow exceptions when clinically appropriate and ensuring reimbursement models support safe, sustainable ambulatory care. Without those concessions, patients default into high-cost settings that may not serve them or the health care system.

A Call to Action for Health Care Stakeholders

As infusion therapy becomes more prevalent, health care leaders must rethink antiquated care pathways. For payors, this means designing policies that support patient choice, ambulatory infusion access, and reimbursement models that keep high-quality providers in the market.

For hospitals and health systems, shifting low-acuity infusions out of hospital outpatient infusion centers is not a threat. It is an opportunity to preserve capacity for higher-acuity patient care while reducing unnecessary spend.

For providers, it means partnering with specialty pharmacies with ambulatory infusion suites that can reduce administrative burden, improve patient support, and ensure infusion therapy is delivered in the most appropriate setting.

Why This Matters Now

Since starting IVIG, my life has changed dramatically. I have been healthier, more stable, and, during the COVID-19 pandemic, was the only member of my family who did not become infected.

As someone who has lived on both sides of the infusion chair, I can say with confidence: the right site of care, supported by the right specialty pharmacy partner, can change lives.

Infusion therapy is complex. But with thoughtful collaboration and patient-centered design, the system doesn’t have to be.

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