The way Medicare negotiates drug prices is changing, and those changes will directly affect people living with chronic illnesses, including autoimmune disease. As these policies are developed, one thing is clear: patients must be part of the conversation.

That’s why The AIP BIPOC Network joined over 20 organizations in signing a letter submitted by the EACH/PIC Coalition to the Centers for Medicare & Medicaid Services (CMS). The letter responds to CMS’s latest draft guidance on implementing Medicare drug price negotiations for 2028, and includes several recommendations to ensure that the process protects, not harms, patients.

What’s Going On?

Key Concerns From the Letter

CMS Must Make Better Use of Patient Input

Patients and advocacy groups have participated in CMS’s roundtables and town halls, but it’s still unclear how, or if, their feedback is being used. As the people directly affected by these policies, patients deserve to know their voices matter. We’re asking CMS to be transparent and make patient experience a key factor in decision-making.

Listening Shouldn’t End Once Prices Are Set

So far, CMS has only collected input before finalizing drug prices. We believe it’s equally important to hear from patients after prices go into effect. If there are negative impacts, like limited access to a needed drug, there should be a system in place for patients to report it.

Roundtables Need Improvement

While we appreciate that CMS adopted a more private and open-ended roundtable format, several issues remain:

• Not enough patients were selected to participate
• Some participants lacked experience with the drug or disease in question
• Session times were inflexible for working individuals or caregivers
• The chat feature helped some contribute, but its use needs to be encouraged more clearly
• The application process was confusing and asked for unnecessary personal details like home addresses

Protect Against New Insurance Barriers

Lowering drug prices could push insurance plans to adopt more restrictive policies, like prior authorizations or step therapy. We’re urging CMS to put patient protections in place now, before harm occurs.

Open Ongoing Feedback Channels

We’re calling for a dedicated way for patients to give real-time feedback if they experience problems due to negotiated drug prices. CMS should also promote this feedback system broadly, especially to older adults, caregivers, and community-based organizations.

Don’t Undercut Doctors or Limit Treatment Options

For the first time, Part B medications (like infusions administered in clinics) will be subject to negotiation. If provider reimbursement drops too low, some doctors may stop offering certain treatments altogether. That puts patients at risk of being switched to a different drug, not because it’s medically better, but because it’s cheaper. That’s not acceptable.

Why It Matters

People living with chronic illness often rely on consistent access to medications to stay stable, functional, and independent. When policies change how those medications are priced or delivered, without real input from the people most affected, it can lead to serious disruptions in care.

Patients, especially those with complex chronic conditions, need consistency, flexibility, and access to treatments that work for them. And those of us in BIPOC communities already face greater obstacles to getting diagnosed, treated, and heard. We cannot afford to be sidelined in decisions that directly affect our care.

For BIPOC communities, who already face greater barriers to diagnosis and treatment, the risks are even higher. We are more likely to be overlooked in health policy conversations, despite being disproportionately impacted by chronic illness.

Drug price negotiation should not just be about lowering costs, it must also be about protecting access and equity.

We need to be in the room, and our input must carry weight.

Take Action

The policies being finalized right now will shape how, and whether, patients can access the treatments they need through Medicare. If we don’t speak up, decisions will be made without us. Here’s how you can help ensure patient experiences are heard, protected, and prioritized:

🟡 Read the Full Letter
See what we and over 20 other organizations urged CMS to consider in order to protect access and prioritize patient input.
🔗 Download the EACH/PIC letter

🟡 Share Your Medicare Experience
Have Medicare changes affected your treatment, medication access, or care planning? Share your story to help shape future advocacy.
🔗 Submit your story

🟡 Join Our Online Community
The AIP BIPOC Community (ABC) is a dedicated space for connection, education, and action for those living with autoimmune and chronic illness.
🔗 Join the ABC Community

🟡 Contact Lawmakers and CMS
Reach out to your representatives and federal agencies to emphasize the importance of patient-centered policy in Medicare reforms.
🔗 Find your representatives

🟡 Raise Awareness
Share this blog and the CMS letter with your network, via social media, email, or community groups. Most people aren’t aware of how these Medicare changes are unfolding. The more people who understand the stakes, the louder our collective voice becomes.

🟡 Support Advocacy That Reflects Our Lived Experience
Organizations like The AIP BIPOC Network are working to keep patient perspectives, and BIPOC realities—at the center of national policy. Whether you donate, share, or connect others to our mission, your support makes an impact.
🔗 Donate to The AIP BIPOC Network

🟡 Challenge Harmful Narratives
Push back on language that frames programs like Medicare as wasteful or burdensome. These supports are essential to survival and stability, especially in BIPOC and chronically ill communities.

🟡 Stay Ready to Act
Medicare policies shift quickly. Stay connected to advocacy groups like The AIP BIPOC Network so you’re ready when urgent action is needed.

Final Thoughts

Policies are being made now that will shape our care for years to come. Patients must not only be included, we must be listened to, respected, and protected.

Cost-saving should never come at the cost of our health. Patient engagement should not be a box to check, it should be a foundational part of any process that impacts our care. That means listening to patients both before and after decisions are made, making space for diverse voices, and designing policies that reflect the lived realities of chronic illness.

When patient voices are truly heard, policies improve. Access improves. Health outcomes improve.

Let’s keep pushing for a future where that’s the standard, not the exception.