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

Athena Diagnostics

Athena 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.

Prescription Assistance

Tolvaptan prescription

Tolvaptan 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 one that 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.

State Pharmaceutical Assistance Programs

Some 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.

APhA Foundation

The 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.

NeedyMeds

This nonprofit provides information on health care programs while also helping patients afford medications and other health care costs.

PhRMA’s Medicine Assistance Tool

The 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.

National Kidney Foundation

NKF 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.

Patient Advocacy Foundation’s Co-Pay Relief

This 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.

Cost Plus Drug Company

Cost Plus Drug Company offers safe, affordable medicines at the lowest possible price.

  • Find and afford the drugs you need
  • Know what your medication costs
  • Track your order in real time

Pediatric Assistance

 

The HealthWell Foundation

HealthWell’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.

Health Care Access

National Institute of Diabetes and Digestive and Kidney Diseases

For 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.

Health Centers

Health 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.

Medicare Patient Assistance

Medicare 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.

Transplant Assistance

RemoTraC

Keeping 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.

The American Transplant Foundation’s Patient Assistance Program

This 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.

American Organ Transplant Association

This organization helps transplant patients by helping them obtain and sustain free transportation to the transplant center.

National Living Donor Assistance Center

The 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.

Travel Assistance

Air Charity Network

A nonprofit providing free air transportation operated by volunteer pilots to specialized health care facilities and serves all 50 states.

Angel Flight Soars

This nonprofit organization provides free flights daily for medical services. It arranges free air transportation for people who need to travel to receive life saving medical treatment, but can't afford it.

LifeLine Pilots

This organization of volunteer pilots provides free flights for lifesaving treatments to passengers in financial need.

Mercy Medical Angels

This nonprofit provides transportation assistance by air with volunteer pilots and commercial airlines and by ground including gas cards, bus and train tickets.

Miracle Flights for Kids

This organization offers financial assistance to low-income children for commercial air travel to obtain medical care.

Children’s Flight of Hope

This nonprofit provides free, private air transportation to and from medical facilities for children in need of medical assistance and care.

Additional Financial Assistance Programs and Grants

The ESRD National Coordinating Center Patient Grant Library

The 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.

PAN Foundation

This nonprofit helps underinsured people with life-threatening, chronic, and rare diseases get the prescribed medications and treatments they need by assisting with their out-of-pocket costs and advocating for improved access and affordability.

American Kidney Fund

This 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.

Patient Services Incorporated

This organization helps provide financial assistance with patients' medication, health insurance premiums and copay, and it provides support navigating health insurance plans, giving legal advice, and how to cover travel costs.

Single Mothers Grants

This organization offers a directory of financial assistance programs that help single mothers with a variety of financial assistance programs, including medication and medical bills.

The Assistance Fund

This organization provides financial assistance for copayments, coinsurance, deductibles, and other health-related expenses to families dealing with high medical out-of-pocket costs.

If you are aware of other available resources not listed here, please email pkdconnect@pkdcure.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.