Issue 0.1

Both Sides of the Pharmacy Counter
Welcome to the dual-lens newsletter on health, humanity, and what you can do to ensure the system acknowledges what it often misses.

 From My View

When Your Body Knows Before You Do

In 2009, my fingers turned ice cold—even in the Florida sun. Gloves, warm water, hot packs—nothing worked. And there were no answers. At 14, I was too young to understand “chronic illness,” and too polite to advocate for more information about my health.

Ten years later, I was a pharmacy intern explaining conditions like Raynaud’s phenomenon and anaphylactic shock to patients—still without a formal diagnosis for my own symptoms. That was the moment of realization: I’d been both patient and provider all along.

Most people receive a diagnosis and then a care plan. I developed care plans for others before I ever received one for myself.

The point? Health isn’t linear. And neither is healing.

 Seen & Felt

Duality in Action: Interning With Symptoms

 As a Pharmacist:
I was trained to recognize drug-induced vasospasm, counsel on beta-blockers, and monitor for adverse events.

 As a Patient:
I was living through an adverse event—but hadn’t yet been fully seen.

 Insight: We teach providers to trust evidence. But patients often live in a nebulous space, where symptoms overwhelm and disable far more than just the physical. Systems often don’t move unless a lab result does.

 Pulse Check

 Medicare Drug Price Negotiation Expands

The U.S. Department of Health and Human Services (HHS) recently named 15 additional prescription drugs for Medicare Part D price negotiations as part of the Inflation Reduction Act. These medications were used by approximately 5.3 million Medicare beneficiaries between November 2023 and October 2024 to treat conditions like cancer, type 2 diabetes, asthma, and pulmonary fibrosis.

 CMS Press Release

Why It Matters:

•  Patients: These high-cost drugs—such as Ofev, Eliquis, and Xarelto—may become more affordable. Ofev, in particular, is approved to slow the rate of decline in lung function for patients with interstitial lung disease (ILD), including systemic sclerosis-associated ILD (SSc-ILD).
   Prescribing Information – Ofev
  
  
•  Healthcare Providers (HCPs): Expect more patient questions about affordability and coverage changes, especially if prior authorizations or new formulary restrictions emerge.

•  The System: Senator Chuck Grassley has reintroduced the Pharmacy Benefit Manager (PBM) Transparency Act of 2025 (S.526), aiming to expose how PBMs may manipulate access and pricing behind the scenes.
   View Bill S.526 – Congress.gov

 Practicing Patient POV:
I’ve taken Ofev to help slow the progression of pulmonary fibrosis and decline in lung function. Seeing it on the negotiation list brings hope—but also hesitation. Cost is only one piece of access. If PBMs or health systems respond by adding new hurdles like prior authorization, step edits, or tier shifts, patients like me may still face the same old barriers dressed in new policy.

 Practice This

Dual-Check Journaling Prompt

As someone living in your body:
 What’s one subtle signal you’ve ignored lately?

As a decision-maker in your life or work:
 What systems might dismiss that signal—and why?

 Want to share your response? Submit your reflection via this form .

 Quick Hits 

 Trials & Tribulations
A new open-label Phase ½ clinical trial—RESET-SSc (NCT06328777)—is currently enrolling participants in the U.S. to evaluate RESE-Cel, a CAR T-cell therapy, in adults with diffuse cutaneous systemic sclerosis (dcSSc). The study focuses on patients with early active disease and significant organ involvement—including the skin, lungs, kidneys, or heart.

 View Trial – ClinicalTrials.gov

 Reflection: While this trial brings exciting potential, criteria like “early active disease” can function as indirect gatekeepers. For many patients whose disease took years to diagnose or who now live with stable but irreversible damage, this may feel like progress they’re not eligible to touch.

Benefit Breakdown
The April 2025 CVS Caremark Advanced Control Specialty Preferred Drug List does not include Actemra® (tocilizumab) among its listed preferred specialty medications. This omission may indicate a change in its formulary status, potentially affecting patients who rely on Actemra for conditions like rheumatoid arthritis and systemic autoimmune diseases.

 CVS Caremark 2026 Advanced Control Specialty Preferred Drug List (PDF)

 Impact: Patients may encounter higher co-pays, new prior authorization requirements, or be encouraged to switch to alternative therapies. Such formulary adjustments, often driven by cost considerations, can disrupt established treatment regimens.

 Did You Know?
Raynaud’s phenomenon can be an early indicator of systemic autoimmune diseases like systemic sclerosis—but it can be dismissed or overlooked entirely in early care visits.
 NIH Raynaud’s Overview

 Reality: Early intervention is rare unless a patient’s symptoms are both visible and measurable.