Patient Assistance Resources

Great progress has been made in the treatment of primary immunodeficiency disorders. However, these treatments often come at a significant financial burden to the family of an individual with a primary immunodeficiency disorder. The majority of individuals with primary immunodeficiency disorders rely on private third party payers to assist with these expenses, but are often frustrated by the amount of paperwork and phone calls it takes to justify to the payers the use of a therapy prescribed by their physician. Even those individuals who have adequate insurance coverage of therapy often face expensive insurance premiums or high co-payments. Others simply lack affordable health insurance and are forced to stop treatment.

IDF understands that these are significant concerns for individuals with primary immunodeficiency disorders. The IDF insurance specialist and the additional resources listed below are provided to offer the tools to help each of you face these difficult challenges.

IDF’s Patient & Family Handbook
The Patient & Family Handbook’s chapter on Health Insurance was written by our insurance specialist. Click Here to download the chapter from our 4th Edition Patient & Family Handbook:

IDF’s Insurance Specialist
Through the IDF, individuals and health care providers are connected with an expert insurance specialist. The specialist offers assistance and advocates on behalf of those experiencing problems including insurance denials for therapy or procedures related to primary immunodeficiency diseases and for problems related to reimbursement of IVIG.  To be connected with our specialist, please visit Ask IDF or call (800) 296-4433.

Health Insurance Immunoglobulin Denials: “How to Appeal” Tips
Immunoglobulin (IG) therapy is an expensive therapy. Unfortunately some insurance companies deny IG therapy for primary immunodeficiency, until the insurer understands the rationale behind this expensive life sustaining therapy. They are very reluctant to approve expensive payments per year where indications are not substantiated. CLICK HERE to see some “how to” tips from a clinical immunologist that has been successful in overturning IG denials, as well as sample appeal letters that can be tailored to the patient’s clinical history.

A.C.C.E.S.S.

ACCESS is a program that “Advocates for Chronic Conditions, Entitlements and Social Services”. The ACCESS program helps families navigate the often complex maze of state and federal entitlement programs, as well as eligibility for health insurance through state high-risk pools and other alternatives, and through group health insurance continuation under federal law (Consolidated Omnibus Budget Reconciliation Act – COBRA and the Health Insurance Portability and Accountability Act – HIPAA).  Contact: 1-888-700-7010 Toll Free.

Immunoglobulin Manufacturers’ Assistance Programs

BAXTER (Gammagard Products)
GARDian Program and reimbursement assistance
The GARDian Program is a no-cost comprehensive resource, open to all people with primary immunodeficiency, their families, and anyone who relies on immunoglobulin (Ig) therapy including assistance with lapse in insurance coverage.
877.655.4273
https://www.mygardian.com/gardian/home

CSL BEHRING (Carimune, Privigen, Hizentra)
Reimbursement Answer Line and Patient Assistance Program
Reimbursement Resource Center is designed to provide helpful insights for understanding medical service costs and related insurance matters, including health insurance reimbursement for the CSL Behring product line and Patient Assistance Program.
800.676.4266
http://www.cslbehring-us.com/patients-and-families/reimbursement-resources-center.htm

GRIFOLS (Flebogamma)
Reimbursement Support
Grifols Reimbursement Support provides health insurance reimbursement assistance for Grifols products including a resource Website, an emergency access program, and a reimbursement hotline
1.888.GRIFOLS, option 4
http://www.grifolsusa.com/reimbursement.html

OCTAPHARMA (Octagam)
Compassionate Use Program
Octapharma USA has a limited compassionate use program for patients with a primary immunodeficiency who experience a temporary lapse in product coverage.
201.604.1123
stanley.ammons@octapharma.com

TALECRIS (Gamunex)
Gamunex Connexions
Gamunex Connexions provides support for Gamunex patients with patient education and resources including assistance in the event of private insurance lapse.
888.263.8243
https://www.gamunexconnexions.com/

Connection to Other Important Resources

Take health care into your own hands
Federal government website managed by the U.S. Department of Health & Human Services that explains insurance options, public programs, and other services in your state. http://www.healthcare.gov/

Family Voices
Information about making informed decisions for children and teens with special heath care needs. http://www.familyvoices.org/

Families USA Program Locator
Search by state to find health insurance assistance programs that help to address questions and problems with Medicare, private health insurance, and access to care for the uninsured. http://www.familiesusa.org/resources/program-locator/

GovBenefits.gov
Program descriptions and contact information about federal and state assistance programs. http://www.govbenefits.gov/govbenefits_en.portal

Families USA Resources for Consumers
Information about finding quality health care and how to deal with medical debt. http://familiesusa.org/resources/resources-for-consumers/

Health Resources and Services Administration (HRSA)
Find federally funded heath care centers that provide free or low cost care. http://findahealthcenter.hrsa.gov/

Insure Kids Now
Links to state child and adolescent health insurance programs. http://www.insurekidsnow.gov/

HealthCareCoach.com
Help and advice on getting health coverage for families that have been denied health insurance claims. http://healthcarecoach.com/

Cover the Uninsured Resources for the Uninsured
Consumer guides for getting and keeping health insurance. http://covertheuninsured.org/content/resources-uninsured

Hill-Burton Free and Reduced Cost Health Care
In 1946, Congress passed a law that gave hospitals, nursing homes and other health facilities grants and loans for construction and modernization. In return, they agreed to provide a reasonable volume of services to persons unable to pay and to make their services available to all persons residing in the facility’s area. The program stopped providing funds in 1997, but about 300 health care facilities nationwide are still obligated to provide free or reduced-cost care. For a list of these facilities: http://www.hrsa.gov/hillburton/hillburtonfacilities.htm Free or reduced-cost Care: http://www.hrsa.gov/hillburton/default.htm

Partnership for Prescription Assistance
The Partnership for Prescription Assistance brings together America’s pharmaceutical companies, doctors, other health care 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. To access the Partnership for Prescription Assistance by phone, you can call toll-free, 1-888-4PPA-NOW (1-888-477-2669). https://www.pparx.org/Intro.php

RxAssist
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 health care professionals and patients can find the information they need. All in one place. http://www.rxassist.org/default.cfm

Patient Services Inc.
PSI evaluates an individual’s financial, medical, and insurance situation to determine who is eligible for premium OR co-payment assistance. PSI provides help for many illnesses and offers many types of assistance. They recognize that one of the most difficult challenges that face many chronically ill patients is the high cost of co-payment and have recently introduced a pilot co-payment program for patients with PIDD only. If eligible, patients may receive premium OR co-payment assistance. Please note that patients are not eligible to receive both types of assistance. Assistance can be provided for up to one year. If you would like more information or to apply please call 800.366.7741 or visit the website at www.patientservicesinc.org.

BenefitsCheckUp
Many older people need help paying for prescription drugs, health care, 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. http://www.benefitscheckup.org

National Patient Travel Center
The purpose of the National Patient Travel Center is “…..to ensure that no financially-needy patient is denied access to distant specialized medical evaluation, diagnosis or treatment for lack of a means of long-distance medical air transportation.” Patients requiring assistance call: 1-800-296-1217. http://www.patienttravel.org