Community & Support Resources & Education Parents & Caregivers ADPKD Registry Next Steps and Helpful Links Facebook Online Community Peer Mentors Financial assistance resources for managing PKD The cost of managing chronic kidney disease can be expensive, especially once your disease progresses to kidney function decline and kidney failure. We gathered some financial assistance resources that might help you afford different aspects of your care. Genetic Testing KidneyCodeReata Pharmaceuticals and Invitae have partnered to offer sponsored, no-charge genetic testing and counseling for CKD patients. They currently test for PKD2 and PKHD1. They do not include PKD1 on their panel. For more information about PKD genetics, visit our webpage What causes ADPKD. Learn more Athena DiagnosticsAthena Diagnostics is committed to making diagnostic testing more accessible and more affordable for all patients. Athena Diagnostics recognizes the unique challenges of patients facing various diseases and conditions and is dedicated to personalizing and simplifying customer service, including a new tiered financial assistance program. On September 1, 2014, Athena launched the Athena Alliance Program that was created to expand patient access to a variety of diagnostic methodologies and testing. The Athena Alliance Program provides tailored financial solutions based on federally published income guidelines to any insured or uninsured patient who qualifies financially and has a balance that exceeds $100. Learn more Prescription Assistance Tolvaptan prescriptionTolvaptan is the only FDA approved treatment for ADPKD. Every insurance company will negotiate to determine coverage for tolvaptan as a treatment for PKD and each individual plan available will be different. To find out if your insurance will cover tolvaptan, please reach out to your insurance company. Otsuka offers a number of support programs for eligible patients, including the JYNARQUE™ Copay Savings program, which ensures that eligible commercially insured patients do not pay more than $10 for a prescription for tolvaptan. Further information is available here. The Otsuka Patient Assistance Foundation (OPAF), provides support for eligible patients who are unable to afford their medication. Learn more State Pharmaceutical Assistance ProgramsSome states offer a state pharmaceutical assistance program (SPAP) to help their residents pay for prescriptions drugs, particularly if you have End Stage Renal Disease. The states that offer SPAPs often coordinate their SPAPs with Medicare’s drug benefit (Part D). Check with your state’s program to see how it works with Part D. If a drug is covered by both your SPAP and your Part D plan, what you pay plus what the SPAP pays for the drug will count towards the out-of-pocket maximum you have to reach before your Medicare drug costs go down. Learn more APhA FoundationThe APhA Foundation created an Align My Refills tool to create a new medication use system where patients, pharmacists, physicians and other health care professionals collaborate to dramatically improve the cost effectiveness and quality of patient health outcomes. The idea is to reduce your trips to the pharmacy and improve your ability to take medications as prescribed through medication synchronization (med sync) programs now being offered by some pharmacies. Med sync allows you to pick up of all of your ongoing prescription refills at the pharmacy on a single, convenient day each month and work closely with your pharmacist on sticking to your medication regimen. Learn more PhRMA’s Medicine Assistance ToolThe Medicine Assistance Tool is a search engine designed to help patients, caregivers and health care providers learn more about the resources available through the various biopharmaceutical industry programs. MAT is not its own patient assistance program, but rather a search engine for many of the patient assistance resources that the biopharmaceutical industry offers. Go to their website to enter your current medications and the tool will help match you with resources or cost-sharing programs that may help lower your out-of-pocket costs, whether or not you have insurance. Learn more National Kidney FoundationNKF offers a free prescription discount card through a collaboration with Watertree Health. The card can be used for discounts on most brand name and generic drugs at more than 60,000 drug stores nationwide. Learn more Patient Advocacy Foundation’s Co-Pay ReliefThis program exists to reduce the financial distress patients, and their familes, face when paying for treatment. They provide direct financial assistance to qualified patients with co-payments, co-insurance or cost-sharing associated with prescription drugs for chronic diseases, such as PKD. Learn more Pediatric Assistance The HealthWell FoundationHealthWell’s Pediatric Assistance Fund helps children access the medical treatments they need, regardless of disease type or condition. Through the fund, HealthWell is able to assist families in meeting their cost-sharing obligations to help their child start or continue medical treatments they otherwise would not be able to afford. Learn more Health Care Access National Institute of Diabetes and Digestive and Kidney DiseasesFor many people with kidney failure, the Federal Government—through Medicare External link — helps pay for much of the cost of their treatment. The U.S. Congress passed the Social Security Amendments of 1972 that guarantee Medicare coverage for most people with kidney failure — even those under age 65. NIDDK offers further information on this and other government resources. Learn more Health CentersHealth centers are community-based and patient-directed organizations that deliver comprehensive, culturally competent, high-quality primary health care services. Health centers also often integrate access to pharmacy, mental health, substance use disorder, and oral health services in areas where economic, geographic, or cultural barriers limit access to affordable health care services. Health centers deliver care to the Nation’s most vulnerable individuals and families, including people experiencing homelessness, agricultural workers, residents of public housing, and the Nation’s veterans. Learn more Medicare Patient AssistanceMedicare beneficiaries can qualify for Extra Help with their Medicare prescription drug plan costs. The Extra Help is estimated to be worth about $5,000 per year. To qualify for the Extra Help, a person must be receiving Medicare, have limited resources and income, and reside in one of the 50 States or the District of Columbia. Learn more Transplant Assistance RemoTraCKeeping up with routine post-transplant testing can be time consuming. This service, offered by CareDx, offers an in-home blood draw service so that individuals can keep their regular testing schedule without in-person visits to a hospital or lab. RemoTraC covers the cost of the mobile phlebotomist, so there’s no additional cost beyond the regular co-pay. Learn more The American Transplant Foundation’s Patient Assistance ProgramThis program helps provide emotional and financial support to patients and their families. For living donors, the program covers essential living expenses due to lost wages during recovery after surgery so they can heal without facing financial troubles. For transplant recipients, they help patients to keep the organ that keeps them alive by providing assistance to cover delinquent insurance premiums to prevent loss of insurance coverage, medication co-payments during insurance gap periods, and/or changes to insurance provider. Learn more American Organ Transplant AssociationThis organization helps transplant patients by helping them obtain and sustain free transportation to the transplant center. Learn more National Living Donor Assistance CenterThe mission of this organization is to reduce the financial disincentives to living organ donation. They help people who are considering being a living organ donor with the non-medical expenses associated with the process, including with travel expenses, lost wages, and dependent care expenses. Learn more Additional Financial Assistance Programs and Grants The ESRD National Coordinating Center Patient Grant LibraryThe ESRD National Coordinating Center Patient Grant Library provides information on funding to support ideas for education, advocacy and / or helping others living with kidney disease. Grants can pay for unique or creative projects or for basic needs — even scholarships. Learn more American Kidney FundThis organization offers need-based programs to help kidney patients afford medical expenses such as health insurance premiums, transportation costs, prescription medications and other necessities related to health care. Learn more Single Mothers GrantsThis organization offers a directory of financial assistance programs that help single mothers with a variety of financial assistance programs, including medication and medical bills. Learn more If you are aware of other available resources not listed here, please email firstname.lastname@example.org. Please note: The PKD Foundation provides this information about resources which may help PKD patients. However, the PKD Foundation has not investigated or evaluated, and does not endorse, any product or service that is described in this information. The PKD Foundation does not receive any remuneration for providing this information, and has no responsibility or liability for any product or service that is described in this information.