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
Consumer Guides for Getting and Keeping Health Insurance
The Georgetown University Health Policy Institute has written A CONSUMER GUIDE FOR GETTING
AND KEEPING HEALTH INSURANCE for each state and the District of Columbia -- fifty-one in
all. These Consumer Guides are available at this web site and will be updated periodically
as changes in federal and state policy warrant. http://www.healthinsuranceinfo.net/
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.
A.C.C.E.S.S.
The ACCESS Program is brought to you by Accredo Health, Inc. and its affiliates, Accredo Therapeutics, Inc.
and Hemophilia Health Services, Inc. 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.
GAMMASSIST Program (Preventive -- need to sign up to participate in program)
The GAMMASSIST Program is a way for eligible users of Baxter's Immune Globulin Intravenous (Human) therapies to
continue to receive their Immune Globulin without charge in the event of a lapse in private insurance. Any user
of Baxter's GAMMAGARD LIQUID [Immune Globulin Intravenous (Human)] 10% or any other Baxter brands of IVIG therapy
is eligible to participate in the program. http://www.immunedisease.com/US/patients/insurance/gammassist.html
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/Patient-Reimbursement.cfm
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.
Resource for Physicians to obtain Emergency Immunoglobulin
The Plasma Protein Therapeutics Association (PPTA) member companies are committed to producing life-saving therapies and making them available to all individuals who need them. This toll-free service is geared to treaters because when an incoming call is routed, the company representative will need specific clinical information that only a physician can provide. In addition, once the manufacturer and physician are able to meet the patient's critical need, the physician must furnish details (such as their DEA number) in order for the therapy to be shipped. We encourage patients to work with their treater to gain information and determine whether to contact the manufacturer of their preferred brand. Each individual company has toll-free numbers in place http://pptaglobal.org/docs/IVIG_TOLL_FREE_NUMBERS.pdf
Connection to Other Important Resources
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