Patient Experiences Driving Change
Calling All Patients and Caregivers: Share Your Perspective On Prescription Drugs
We support reducing prescription drug costs and want to ensure health reforms truly benefit patients. For that to happen, patients and caregivers need to share their experiences.
Your Voice Matters
There are many efforts to conduct prescription drug cost-reviews and implement payment limits on individual medications in an attempt to lower drug costs. However, healthcare is complicated and this process is new and untested. Patient costs may go down, but they also might not go down, and unintended consequences (like switching prescribed drugs) are possible. Truth is, no one knows yet.
What can you do? State drug affordability boards and other entities are seeking input from doctors, insurers, drug makers, pharmacists, patient groups, and patients/caregivers. From patient voices they are specifically looking to hear more about your health conditions, your treatments, how your diagnosis impacts your life, and your experiences accessing the medications you need.
If you have a chronic condition or regularly take prescription medications, you can participate in the PIC. We have many ways for patients and caregivers to get involved.
Medicare and State Specific Alerts
Centers for Medicare & Medicaid Services
CMS recently recruited patients to give feedback on these 15 drugs subject to negotiation in 2025. Stay up-to-date on next steps by filling out the form below, and a representative from the PIC will contact you.
Colorado
Colorado’s PDAB conducted cost reviews on 5 drugs and is now considering the implementation of an upper payment limit on Enbrel, Stelara, and Cosentyx in 2025. Fill out the form to get the latest updates on these hearings.
Maryland
Maryland’s PDAB is conducting cost reviews on 6 drugs in 2025. Stay up to date on the process and how to get involved by filling out the form below.
Oregon
Oregon’s PDAB is reviewing 27 medications and insulin products. They need patient/caregiver input through a survey (due April 30) or testimony at a hearing (on May 21). If you’re taking medications on either list, complete the form below and a PIC representative will help you share your experiences.
Step 1
Complete the form.
Step 2
Watch for an email from someone with an aiarthritis.org address, who are both patients and leaders of the PIC. They will send you a personal email back within 48 hours.
Step 3
The email will provide details about the ways patients/caregivers can get involved. Led by patients for patients!
Complete the form, and you’ll be connected to patients from the Patient Inclusion Council (PIC), who will help make sure your experiences are counted! We will not use your information or email for any other reason than to contact you about participating in the PIC.
Want to Learn More About Cost Reviews and Payment Limits?
Government prescription drug reviews are new efforts in the United States to address the high costs of healthcare. They are happening in many states with efforts called Prescription Drug Affordability Boards (PDABs) and with Medicare under CMS.
The PIC supports affordable prescription drugs, but we also know the healthcare system is complex and those who choose our drugs (insurance companies/Pharmacy Benefit Managers) will still be the ultimate deciders on what drugs patients can take.
These efforts may lower costs for Medicare, for health plans, for states, but will these savings be passed down to patients? We don’t know. But if policymakers are trying to address the needs of patients, we need to make sure they know what those needs are!