For people with PI, dealing with health insurance and understanding the maze of issues involved can be overwhelming. Often health insurers require additional paperwork to justify the use of the therapy prescribed. Added red tape and follow up phone calls can be frustrating. Even individuals who have adequate insurance coverage often face expensive insurance premiums or high co-payments or coinsurance.
If you are confused about insurance options, or simply lacking affordable health insurance start here to learn the basics and frequently used terms.
Many older people need help paying for prescription drugs, healthcare, utilities and other basic needs. Ironically, millions of older Americans—especially those with limited incomes—are eligible for but not receiving benefits from existing federal, state and local programs. Ranging from heating and energy assistance to prescription savings programs to income supplements, there are many public programs available to seniors in need if they only knew about them and how to apply for them.
The Caregiver Action Network (CAN) is a family caregiver organization working to improve the quality of life for those who care for loved ones with chronic conditions, disabilities, disease or the frailties of old age.
The Children’s Defense Fund is a non-profit organization devoted to children’s issues, including the Children’s Health Insurance Program.
Families USA is a non-profit organization dedicated to the achievement of high-quality, affordable health and long-term care for all Americans. The website contains state and national resources.
Family Voices is a national organization that provides information and education concerning the healthcare of children with special health needs.
A resource for families, individuals and the self-employed, the Health Insurance Resource Center provides the tools to become a better-informed health insurance consumer.
This site provides links to state child and adolescent health insurance programs.
The Invisible Disabilities Association (IDA) helps those living with various conditions, as well as their loved ones, through their website, articles, literature, projects and seminars.
Keep Swimming Foundation provides relief to families of critically ill patients who require extended inpatient medical care at an accredited hospital through micro grants ranging from $100 to $1,500.
Provides children and their families free flights to distant, specialized care and second opinions.
The National Committee for Quality Assurance (NCQA) is a private, not-for-profit organization dedicated to assessing and reporting on the quality of managed care plans.
The National Disabilities Rights Network (NDRN) is a non-profit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and Client Assistance Programs (CAP) for individuals with disabilities.
The National Family Caregivers Association (NCFA) is a grass roots organization created to educate, support, empower and speak up for millions of Americans who care for chronically ill, aged or disabled loved ones.
The National Organization for Rare Disorders (NORD) is a non-profit organization which provides information, programs and services for thousands of rare medical conditions, including primary immunodeficiencies.
The National Patient Travel Center is a non-profit organization that provides a variety of services to individuals and families seeking ways to travel long-distances for specialized medical evaluation, diagnosis and treatment.
NeedyMeds provides information on programs that help people facing problems paying for medications and healthcare; assists those in need in applying to programs; and provides health-related education using innovative methods.
The Partnership for Prescription Assistance brings together America’s pharmaceutical companies, doctors, other healthcare providers, patient advocacy organizations and community groups to help qualifying patients who lack prescription coverage get the medicines they need through the public or private program that’s right for them.
The Patient Advocate Foundation is a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability. They offer a co-pay relief program for individuals with all types of insurance.
The Patient Notification System is a program developed by the Plasma Protein Therapeutics Association (PPTA) to notify patients who receive plasma products, such as intravenous immunoglobulin (IVIG), about product recalls.
Patient Services Incorporated (PSI) is a non-profit charitable organization dedicated to subsidizing the high cost of health insurance premiums and co-payments for persons with specific chronic illnesses, including primary immunodeficiencies.
Patient assistance programs are run by pharmaceutical companies to provide free medications to people who cannot afford to buy their medicine. RxAssist offers a comprehensive database of these patient assistance programs, as well as practical tools, news, and articles so that healthcare professionals and patients can find the information they need.
Save Babies Through Screening Foundation educates parents, pediatric healthcare providers, and policy makers about available comprehensive newborn screening.
This is an advocacy group which helps families in the state of New York receive financial aid, nursing services and government medical services that they may be entitled to for their chronically ill child.
Hizentra & Privigen Connect: 1-877-355-4447
CSL Behring manufactures Hizentra and Privigen.
Grifols Customer Support Center: 888.GRIFOLS (888-474-3657)
Gamunex Connexions Program (comprehensive support program): 888-694-2686
Xembify Connections (copay assistance and patient assistance program): https://www.xembify.com/en/xembify-connexions
Grifols manufactures Flebogamma DIF, Gamunex-C, and Xembify.
- Grifols Copay Assistance Announcement 10-27-20: XEMBIFY now offers copay assistance up to $10,000 per calendar year for eligible patients (subject to terms and conditions). Click here to read more.
Kedrion manufactures Gammaked and Gammaplex.
Product Information: 866-634-2765
Coverage Assistance and Patient Access Program: 877-534-9627
Leadiant Biosciences manufactures Revcovi.
Takeda manufactures Cuvitru, Gammagard Liquid, Gammagard S/D, and HyQvia.