IDF Patient Advocacy
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. To download the chapter from our 4th Edition Patient & Family Handbook: http://www.primaryimmune.org/publications/book_pats/e_ch22.pdf
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 call IDF at (800) 296-4433 or email at idf@primaryimmune.org.
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 (COBRA and HIPPA).
Contact: 1-888-700-7010 Toll Free.
Drug Manufacturers' Assistance Programs
For Individuals that take: GAMMAGARD LIQUID or GAMMAGARD S/D
BAXTER IVIG Reimbursement Hotline
The Baxter IVIG Reimbursement Hotline is a complimentary service for patients, caregivers, medical billing staff,
health care providers and anyone else with questions about insurance coverage and reimbursement for GAMMAGARD LIQUID
and GAMMAGARD S/D. Call the national toll-free number 1-800-548- 4448 between 9:00 AM and 5:00 PM, Eastern Time,
Monday through Friday.
The GARDian Program (need to sign up to participate in program)
The GARDian Program provides you with a resource that helps you find access to your therapy
is what the GARDian program is all about. You can rely on us to help you with insurance support,
therapy continuity, personal connections, and educational opportunities from day one on.
https://www.mygardian.com/gardian/
For Individuals that take: GAMUNEX
Gamunex Direct™
The Gamunex Direct™ is designed to provide uncomplicated access for patients taking Gamunex. Program benefits
include Insurance verification and coordination. Call center representatives are available from 7:00 AM to 6:00 PM,
Central Time, Monday through Friday 1-800-305-7881. A member of the pharmacy team is also on call 24 hours a day,
7 days a week.
Talecris Reimbursement HelpLine
For personalized assistance with coding, reimbursement and coverage questions, Talecris offers the Talecris Reimbursement
HelpLine. The Talecris Reimbursement HelpLine provides customers with information regarding reimbursement policies,
billing procedures, coding and claim appeals for Talecris Biotherapeutics, including Gamunex®. The service is free,
and reimbursement experts are available to assist Talecris customers Monday through Friday from 8:30 a.m. to 5:30 p.m.
(Eastern Time) by calling 1-877-827-3462.
http://www.gamunex.com/csm/contact_us.aspx
For Individuals that take: CARIMUNE and VIVAGLOBIN
CSL Behring Patient Assistance Program
The CSL Behring Patient Assistance Program provides medically necessary therapies to qualified patients who are uninsured,
underinsured, or for those individuals who cannot afford their prescribed therapy. Call the CSL Behring Reimbursement Services
Department at 1-800-676-4266 between the hours of 8:00 am - 5:00 pm (ET), Monday through Friday to receive enrollment forms
or to ask any questions about the program. http://www.cslbehring-us.com/s1/cs/enus/1151517254336/content/1151517254307/content.htm
CSL Behring Assurance Program (Preventive - need to sign up to participate in program)
The CSL Behring Assurance Program is designed to ensure that people who rely on CSL Behring recombinant and plasma-derived
therapies can continue to receive these vital treatments even if they experience a lapse in third-party, private health
insurance. https://www.cslbehringassurance.com/cslbehring_enu/start.swe?SWECmd=Start&SWEHo=www.cslbehringassurance.com
For Individuals that take: Flebogamma
Grifols provides an on line "contact us" at www.grifols.com or you can call 1-888-GRIFOLS Option 1 for assistance with product availability and reimbursement issues.
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
assistance. We provide help for many illnesses and offer many types of assistance. If you would like more information
about the help available from PSI for the treatment of any listed disease in this section, please call 800.366.7741. http://www.uneedpsi.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
