Welcome to this month’s ADVOCATE BRIEF
Where has all the trust gone?…
I built this issue around one question: where do patients lose time, money, and trust next? I read the headlines, then I cross-check them against what advocacy teams and patients report in the real world. You will see four angles: policy, cost, community, and tech.
POLICY PULSE: POLITICAL
The policy decisions reshaping drug pricing, coverage leverage, and who carries the risk when systems break.
Policy sets the ceiling on access before care ever reaches a patient. I watch policy moves because they quietly redraw the map for pricing power, coverage decisions, and accountability. When rules shift, patients feel it first and advocacy teams scramble second. This section flags the policy decisions that will shape access long after the press release fades.
340B Blows up in AHA's Face (Jan 21, 2026):
The 340B rebate fight just triggered the exact outcome everyone claimed they wanted to avoid. Manufacturers now move toward universal claims data requirements for all 340B transactions.
State of Denial (Jan 12, 2026)
CBS News lays out how insurers shape care decisions, access, and patient outcomes. The reporting connects incentives to real-world harm.
Judge hits pause on 340B drug rebates pilot program (Jan 08, 2026)
The real problem with 340B never came from reform. It came from the absence of accountability from day one.
If you want one action this week, ask your team which policy risk you monitor with the same rigor you use for revenue risk. Then build a trigger and a response plan.
Policy sets the rules. Cost sets the consequences. Here is what I watched on the money side.
Navigating The Complex Healthcare Maze Has Become Too Burdensome for Patients…
COST OF CARE: ECONOMIC
How rebates, Medicare Advantage tactics, and pricing models drive affordability strain and patient fallout.
Costs keep rising because incentives reward friction and opacity. I track the moves that shift premiums, rebates, and out-of-pocket pain.
When Insurance Stops Being Insurance: Medicare, UnitedHealth, and the Generic Drug Illusion (Jan 30, 2026)
A Senate investigation into Medicare Advantage coding exposed something bigger than one company. Public dollars, private incentives, and patient harm now reinforce each other by design. The system isn’t broken, it was built this way for them to maximize their revenue at the expense of patient harm.
Trump unveils healthcare affordability plan (Jan 27, 2026)
The White House finally put a healthcare affordability plan on paper. Vague or not, it signals where policy pressure will land next.
Most favored nation drug pricing sounds compassionate until you understand the risks (Jan 16, 2026)
This proposal would force U.S. drug prices to match the lowest price offered in other countries. With this comes some major problems around innovation and who foots the cost for new innovation in medicine.
The Non-Profit Disguise (Jan 15, 2026)
Thank you Dutch Rojas! Dutch shows us how some of the largest non-profit players in medicine are anything but, using their status to maximize their revenue while keeping taxes out of the equation. If you don’t subscribe to his substack, take this as a notice that it’s a no brainer. He is a wealth of amazing information.
How Will Plans Cope As Pharma Net Pricing Trend Deflates ‘Gross-To-Net Bubble’? (Jan 14, 2026)
The drug pricing system just crossed a line it cannot walk back. The gross to net bubble started to deflate, and too many executives still underestimate what that means.
If your affordability strategy depends on a spreadsheet and a prayer, you need a rebuild. Start with one metric that ties insight to an access outcome, then hold the line.
Money pressure exposes the cracks. Communities live in those cracks every day. Here is what stood out on access and trust.
COMMUNITY LENS: SOCIOCULTURAL
Where trust, advocacy leadership, and lived experience expose gaps that policy and finance overlook.
Access failures show up first in the community, then in the data, then in the headlines. I keep the focus on what patients and advocates feel first.
Trust moves access faster than any internal escalation (Jan 27, 2026)
Trust moves access faster than any internal escalation. ELAVAY data shows trusted advocacy engagement shortens timelines and reduces friction.
More on ELAVAY at: https://archo.io & https://elavay.com
UnitedHealth ‘aggressively’ gaming Medicare Advantage, Senate investigation finds (Jan 26, 2026)
A Senate investigation just put in writing what many patients, providers, and advocacy teams have warned about for years. Medicare Advantage risk adjustment drifted from care management into revenue maximization.
Allergy & Asthma Network Launches National Patient Advocacy Leadership Initiative (PALI) (Jan 22, 2026)
A national patient organization just launched a program that many companies still treat as symbolic. That assumption creates real risk.
Show me your advocacy metrics and I will show (Jan 16, 2026)
Show me your advocacy metrics and I will show you your priorities. When success equals activity volume, teams chase noise.
More on ELAVAY at: https://archo.io & https://elavay.com
The First Patient Lobby Launches! We The Patient’s Arrives with WTP Live (January 29th, 2026)
We The Patients Live kicked off in Chapel Hill with the notion of “what if.” What if patients had consumer protections that ensured they didn’t have to choose between death or going broke simply because they got sick? What if patients had an external patient advocate to guide them through their care options and help them navigate the system? All of this and more was discussed at the first of many We The Patients Live Events.
For More on We The Patients at: www.wethepatients.org
Join or Mission and Share Your Insights as well!
Your’s Truly (A Co-Founder) Facilitated A Great Panel Discussion Including NC Representative Dr. Tim Reeder. Other Co-Founders Include Sally Neely Nix & The Incomparable Matthew Zachary.
If patients only show up in your strategy deck, you will keep missing the point. Put patient input upstream, then measure whether it changed a decision.
Community insight turns into action when teams build the right systems. Here is what I watched in tech and measurement.
Technology Should Help Your System Feel More Human, Not Less!
TECH TRENDS: TECHNOLOGY
How AI, data systems, and measurement tools either accelerate access or harden existing barriers.
Tech can lift access or widen the gap. I watch where data, AI, and operational tools change patient experience in the real world.
Top healthcare AI trends in 2026 (Jan 28, 2026)
AI will scale fast in healthcare in 2026. Whether it helps patients or harms trust depends on who guides it.
Patient advocacy intelligence predicts risk better than most dashboards (Jan 20, 2026)
Patient advocacy intelligence predicts risk better than most dashboards. ELAVAY data links patient insight to reduced regulatory and reputational exposure.
Patient voices and the lived patient experience allow us to go further, faster, if we just slow down to understand the patient first!
More From Matt Toresco At: https://matttoresco.com
Bring Matt in to speak to your organization, health system or healthcare company to understand the value to patients, and your bottom line, in maximizing the use of the most under-utilized dataset: the patient’s lived experience!
If you deploy AI or dashboards without patient guardrails, you will earn faster mistakes. Put patient impact tests in front of scale.
FEBRUARY IS ALREADY MOVING FAST!
Patients do not wait for quarterly planning cycles. They hit barriers, make tradeoffs, and walk away. If you want trust, you need speed, proof, and follow-through. I will keep calling the shots I see, and I will keep pushing for patient-driven decisions that survive real-world pressure.
Final Calls to Action:
1) Join our fight and our movement at We The Patients at www.wethepatients.org
WE ARE ALL MEDICALLY NECESSARY!
2) Email [email protected] with a headline and a question if you want ELAVAY data behind an item.
3) Reply with your current advocacy metrics and the decision they should drive. I will mark what works and what fails.
1 All references and resources can be found here under the January Tab