Patient & Caregiver Talking Points for Centers for Medicare & Medicaid Services (CMS) Public Comments on the Medicare Drug Price Negotiation Program

Feb 16, 2026 | Advocacy

Centers for Medicare & Medicaid Services (CMS) wants to hear from you!

CMS is collecting input from patients and caregivers about how certain medications affect your health, your daily life, and your ability to afford and access treatment. This is a big deal because for the first time, Medicare is looking at Part B drugs, medications that are often given by a provider through an infusion or injection.

You do NOT have to be on Medicare to submit comments. If you take one of the selected drugs (or are a caregiver), you are eligible to complete the survey.

This is your chance to tell CMS what your medication does for you and what gets in the way of getting your treatment. Many patients struggle not because the medication doesn’t work, but because insurance companies can create barriers like step therapy, prior authorization, and non-medical switching.

Need help starting the survey or understanding what each question means? Visit this step-by-step guide.

These talking points are designed to help you share your story and describe the real-world challenges you face accessing treatment.

Note: This guide is for informational purposes only and is not medical or legal advice. Patients should consult their healthcare provider about treatment decisions.

Submit your comments here by March 1, 2026.

Questions? Email advocacy@infusionaccessfoundation.org

➡️ How does your condition impact daily life?

This is your chance to describe what your life is like when your condition is uncontrolled. You may want to include:

Symptoms on a good day vs. a bad day

    • Fatigue or exhaustion
    • Pain or inflammation
    • Digestive problems
    • Breathing issues
    • Mobility problems
    • Neurological symptoms
    • Brain fog
    • Skin problems
    • Anxiety about flare-ups

How your condition affects your everyday life

    • Missing work or losing income
    • Trouble caring for children or family
    • Canceling plans and avoiding travel
    • Sleep problems
    • Stress, depression, or fear about the future
    • Trouble keeping up with household chores
    • Feeling isolated or unable to do hobbies

Insurance and access challenges that affect daily life
Even if this question is about symptoms, you can also describe how insurance barriers make your condition harder to manage, such as:

    • Spending hours on the phone with insurance
    • Waiting weeks for approvals
    • Delays that cause flare-ups or worsening symptoms
    • Fear of losing access to a medication that works

➡️ How has your condition changed or progressed over time?

CMS wants to know what happens if your condition is not treated quickly and consistently. You may want to describe:

What your health was like before the right medication

    • Symptoms getting worse over time
    • More frequent flare-ups
    • More doctor visits
    • ER visits or hospital stays
    • Long-term damage or disability

What changed once you got on the right treatment

    • Fewer flare-ups
    • Better ability to work and function
    • Less pain or inflammation
    • More stable daily life

What happens when treatment is delayed or disrupted
You can explain how insurance issues have caused setbacks, including:

    • Prior authorization delays
    • Step therapy (“fail first”) requirements
    • Insurance refusing to cover the drug
    • Formulary changes mid-year
    • Forced switching to a different medication (or non-medical switching)
    • These delays can lead to real harm and may undo years of progress.

➡️ What is important to you in managing your condition?

This question is about your goals. What does “success” look like for you? You may want to mention:

Health goals

    • Staying in remission
    • Avoiding flare-ups
    • Preventing disease progression
    • Avoiding permanent damage
    • Fewer side effects

Life goals

    • Being able to work
    • Being able to care for family
    • Having energy to do daily tasks
    • Sleeping normally
    • Feeling less stress and fear
    • Living a normal life

Cost and stability goals

    • Predictable out-of-pocket costs
    • Copay and financial assistance that actually counts toward my out-of-pocket expenses
    • Being able to afford treatment every month
    • Staying on the medication that works
    • Not being forced to switch medications

➡️ What challenges do you face in managing your condition?

You should highlight any access problems you have experienced, such as:

Step Therapy (“Fail First”)

Step therapy is when an insurance company forces you to try and fail another medication before covering the one your doctor prescribed.
This can delay care and worsen disease.

Example:

My insurance required me to try other drugs first, even though my doctor recommended a different treatment.”

Non-Medical Switching

Non-medical switching is when an insurance company forces you to change medications for reasons unrelated to your health or safety (usually because of cost or formulary changes).

Example:

“I was stable on my medication, but my insurance stopped covering it and forced me to switch.”

Prior Authorization

Prior authorization is when your doctor has to get approval from your insurance company before you can start or continue treatment.
This can take days or weeks and often requires extra paperwork, phone calls, and appeals.

Example:

“I’ve had to delay treatment while my provider fights for approval.”

Copay Accumulators and Maximizers

Copay accumulators and maximizers are programs where insurance companies do not count copay assistance toward your deductible or out-of-pocket maximum.
Even if you have a copay card, you can still end up with surprise bills later.

Example:

My insurance took the copay assistance, but it didn’t count toward my deductible, so I still owed thousands later.”

Pharmacy Benefit Managers (PBMs)

PBMs are middlemen between drug companies and insurance plans. They often control what medications are covered and what drugs are placed on the formulary.
PBMs can influence coverage decisions through rebate deals that may not benefit patients.

Example:

“It feels like my insurance chooses drugs based on deals, not what works best for patients.”

Other common patient challenges (especially infusion patients):

    • Traveling long distances for care
    • Taking time off work due to disease flare or complications
    • Delays caused by paperwork and insurance back-and-forth
    • Being forced into a hospital outpatient department or self administration instead of a local infusion center
    • Losing access to community-based infusion providers

 

➡️ What else should CMS consider?

This is your chance to speak directly about what CMS may be missing.

CMS is trying to improve affordability, but many patients struggle because insurance rules are the real barrier.

Here are key points you may want to highlight:

    • Affordability depends on insurance design, not just drug price
    • Out-of-pocket costs depend on copays, coinsurance, deductibles, and plan rules
    • A lower negotiated price does not automatically mean patients pay less
    • Patients need savings at the pharmacy counter or infusion center—not just savings for health plans

Suggested message:
“Will negotiated prices reduce what patients pay, or just reduce what plans pay?”

➡️ Insurance barriers are the biggest reason patients can’t access care

You may want to explain that step therapy, non-medical switching, and prior authorization can:

    • Delay treatment
    • Cause flares and complications
    • Lead to hospitalizations
    • Increase overall healthcare costs

➡️ Treatment stability keeps patients healthy and lowers long-term costs

    • When patients stay on the medication that works, they stay out of the hospital
    • Switching stable patients can be dangerous
    • Interruptions in therapy can undo years of progress

 

➡️ PBMs and rebates can create the wrong incentives

Patients may want CMS to consider:

    • How PBMs influence formularies
    • How rebate systems may encourage higher list prices
    • How savings often stay in the system instead of reaching patients

➡️ Register for a CMS Patient Roundtable Event

Registration Deadline: March 18, 2026

Register here

Roundtable participation is open to patients, caregivers, and patient advocacy organizations. Selected participants will receive a confirmation email the week of March 9, 2026, and will have four business days to confirm participation and request accommodations if needed.

Roundtable dates: April 6–17, 2026 (drug-specific sessions):

    • Anoro Ellipta: Monday, April 6 from 11 a.m. – 1 p.m. ET
    • Biktarvy: Monday, April 6 from 2:30 – 4:30 p.m. ET
    • Botox; Botox Cosmetic: Wednesday, April 8 from 11 a.m. – 1 p.m. ET
    • Cimzia: Wednesday, April 8 from 2:30 – 4:30 p.m. ET
    • Cosentyx: Thursday, April 9 from 11 a.m. – 1 p.m. ET
    • Entyvio: Thursday, April 9 from 2:30 – 4:30 p.m. ET
    • Erleada: Friday, April 10 from 12 – 2 p.m. ET
    • Kisqali: Monday, April 13 from 11 a.m. – 1 p.m. ET
    • Lenvima: Monday, April 13 from 2:30 – 4:30 p.m. ET
    • Orencia: Tuesday, April 14 from 11 a.m. – 1 p.m. ET
    • Rexulti: Tuesday, April 14 from 2:30 – 4:30 p.m. ET
    • Trulicity: Wednesday, April 15 from 11 a.m. – 1 p.m. ET
    • Verzenio: Wednesday, April 15 from 2:30 – 4:30 p.m. ET
    • Xeljanz; Xeljanz XR: Thursday, April 16 from 11 a.m. – 1 p.m. ET
    • Xolair: Thursday, April 16 from 2:30 – 4:30 p.m. ET
    • Tradjenta: Friday, April 17 from 12 – 2 p.m. ET