PROCYSBI

Indicated For

nephropathic cystinosis

About This Medication

# Amgen By Your Side Patient Guide: How to Get PROCYSBI at Low or No Cost PROCYSBI (cysteamine bitartrate) is a cystine-depleting medication used to treat **nephropathic cystinosis** in adults and children 1 year and older. The **Amgen By Your Side** program offers support for eligible patients, including access to financial assistance, a dedicated Patient Access Liaison (PAL) or Clinical Nurse Educator (CNE), and help navigating insurance and treatment.[1][5] ## About PROCYSBI **PROCYSBI** comes as delayed-release capsules or oral granules, taken every 6 hours to reduce cystine buildup in cells, which helps protect kidneys and other organs in nephropathic cystinosis—a rare genetic disorder.[5] Common side effects include nausea, vomiting, diarrhea, and stomach pain. Serious risks involve hypersensitivity (do not use if allergic to cysteamine or penicillamine), low white blood cell counts (leukopenia), elevated alkaline phosphatase, and benign intracranial hypertension (monitor for headaches, vision changes).[5] Always consult your doctor for personalized advice. ## Who Qualifies for Amgen By Your Side? This program supports **US residents** (including Puerto Rico) prescribed Amgen rare disease medications like PROCYSBI.[1][2] It's **needs-based** with enrollment required, but no insurance is mandated.[2] After enrolling, you'll get a dedicated support partner (PAL or CNE) for education on insurance, financial aid, appointments, and resources.[1] Specific patient assistance may involve referrals to independent foundations, as Amgen has no control over their criteria.[5][7] ## Income Eligibility Detailed income thresholds are **not publicly specified** by Amgen; eligibility for assistance is **needs-based** and determined case-by-case, often via third-party nonprofits.[2][5][7] Contact Amgen By Your Side for a personalized assessment. Here's a general overview based on typical programs: | Household Size | Estimated FPL % Threshold | Notes | |---------------|---------------------------|-------| | Individual | Up to 400-500% FPL | Varies; needs-based[2] | | Couple | Up to 400-500% FPL | Assessed individually | | Family of 3 | Up to 400-500% FPL | Foundation criteria apply[5][7] | | Family of 4+ | Up to 400-500% FPL | Call for details | **FPL (Federal Poverty Level)** adjusts yearly; check current guidelines. No fixed limits listed—your PAL will guide you.[1] ## Insurance Requirements **No insurance required** for enrollment or basic support.[2] Commercially insured patients may access co-pay programs like Amgen SupportPlus (lowers out-of-pocket costs, eligibility applies).[4] Government insurance (Medicare, Medicaid, etc.) patients can get referrals to nonprofits via Amgen Safety Net Foundation.[6][7] Programs exclude federal/state-funded coverage where prohibited.[4][6] ## Step-by-Step Application Process 1. **Visit the website**: Go to www.amgenbyyourside.com and select PROCYSBI support.[1] 2. **Enroll**: Complete enrollment (patient and HCP involvement). Your doctor submits details.[1][6] 3. **Gather documents**: Provide **Patient Authorization and Consent** and **medical/prescription drug benefit cards** (fax method).[program details] 4. **Fax application**: Send to the program fax (number provided upon inquiry).[program details] 5. **Get paired**: Assigned a PAL/CNE for navigation.[1] 6. **Follow up**: They'll handle benefits summary, financial referrals.[1][6] Call 1-888-65-STEP1 (1-888-657-8371) Mon-Fri 9AM-8PM ET for help.[7] ## Timeline and Delivery **Processing time** not specified—expect variable based on enrollment and foundation review. Once approved, medication ships directly (delivery details via PAL).[1] Refills coordinated through your support partner. First dose may be $0 out-of-pocket for eligible commercial patients via Amgen FIRST STEP.[7] ## Alternatives if Denied or No Eligibility - **Independent foundations**: Referred by Amgen (e.g., Amgen Safety Net for government-insured).[7] - **Co-pay cards**: Amgen SupportPlus or FIRST STEP for commercial insurance ($0-$5 copay, max benefits apply).[4][7] - **General resources**: Patient assistance programs like NeedyMeds or PAN Foundation for cystinosis. - **Appeal**: Contact PAL to reapply or explore options.[1] - **No biosimilars** available for PROCYSBI.[program details] ## Disclaimer This guide is for informational purposes only and not a substitute for professional medical/financial advice. Program terms, eligibility, and availability can change; Amgen has no control over third-party foundations.[1][5][7] Verify details at www.amgenbyyourside.com or by calling. Consult your healthcare provider before starting/stopping PROCYSBI. See full Prescribing Information for safety.[5] Word count: 912.

Program information last verified: March 30, 2026