To many, the first ten amendments of theUnited States Constitution - otherwise knownas the Bill of Rights - is a document thatoutlines the fundamental rights and privilegesof all Americans.

That premise, when applied to patients withprimary immunodeficiencies, would offermembers of the IDF community a collection ofprovisions to ensure those patients of the‘inalienable’ healthcare rights they warrant.

The Bill of Rights for Patients with a PrimaryImmunodeficiency Disease is a statement ofthe privileges to which patients are entitled. Itconveys the positive rights patients deserve and

should expect; including whathealthcare professionals need toconsider when providing care topatients, thereby providinginformation, offering fairtreatment, and granting themautonomy over medical

decisions. This Bill of Rights wascreated by the IDF Nurse Advisory

Committee and endorsed by the IDFMedical Advisory Committee.

Kim Duff, RN,BSN, and chairof the IDFNurseAdvisoryCommittee(NAC)commented,“We werehaving aNACquarterly

meeting andthe discussion

turned to theimportance ofpatients knowingwhat treatment

they were receiving—the product brand nameand lot number of IVIG at every infusion. Somany patients have no idea and it is soimportant to ensure both safety andconsistency. Not all IVIG products are thesame! Soon we were discussing other issuespatients should be aware of and there was aconsensus by our nursing group to develop aBill of Rights for Patients with PIDD.”

The NAC members embraced the project.These knowledgeable, caring nurseprofessionals with years of experience workingwith patients with primaryimmunodeficiencies collaborated bysubmitting their ideas for the statement. Theystressed the key role patients play in stayinghealthy, by laying out the rights andresponsibilities for patients.

IDF encourages you to take an active role ingetting the treatment and care you need anddeserve. The Bill of Rights for Patients with aPrimary Immunodeficiency Disease canprovide you with not only a list of your rightsas a patient, but also with the confidence andknowledge you may need to successfully beyour own advocate. The entire document canbe seen on page 3, is available atwww.primaryimmune.org, or can be obtainedby contacting IDF at 800.296.4433.

Bill of Rights ............................................1New, IDF Diagnostic & ClinicalCare Guidelines..................................2

Bill of Rights Document .......................3SubmitYour Reel Story ........................3IDF Medical Advisory Committee.....4PIDTC ......................................................4Plasma Users Coalition Created ......5IDF NurseAdvisory Committe..........5Claim Denials......................................6-7EmmyWinner Jordan Lee....................8Volunteer Activities ...............................9Industry News......................................10Making an Investment.........................11With Gratitude ....................................11THINK ZEBRA!...................................11Core Sponsors ....................................12

Immune DeficiencyFoundation Mission:

The national patientorganization dedicated

to improving thediagnosis, treatmentand quality of life ofpersons with primaryimmunodeficiencydiseases through

advocacy, educationand research.

FALL 2009 NUMBER 62

THE NATIONAL NEWSLETTER OF THE IMMUNE DEFICIENCY FOUNDATION

This newsletter is sponsored byan educational grant fromTalecris Biotherapeutics.

Bill of Rights for Patientswith a Primary Immunodeficiency Disease

The main sections of the Billinclude information regarding:

• Medical Information

• Choice of HealthCare Provider

• Involvement in Healthcare Decisions

• Fair Treatment and Non-discrimination

• Privacy and Protection

• Grievances

2 | FALL 2009

IDF AdvocateEditorChristine M. Belser

Medical EditorRebecca H. Buckley, MD

Publication ManagerAdam Freestone

The Immune Deficiency Foundationpublishes IDF Advocate three timesa year. To obtain a freesubscription, please contact:

IDF AdvocateImmune Deficiency Foundation40 West Chesapeake AvenueSuite 308Towson, Maryland 21204

Toll-Free 800.296.4433Direct 410.321.6647Fax 410.321.9165E-mail idf@primaryimmune.orgWeb Site www.primaryimmune.org

Copyright © 2009 by the Immune DeficiencyFoundation. The Immune DeficiencyFoundation is a publicly supported, tax-exemptorganization as described under Section 501(C) (3) of the Internal Revenue Code of 1954,as amended.

NEW, REVISED!IDF DIAGNOSTIC ANDCLINICAL CARE GUIDELINESOriginally published in 2006, the Immune DeficiencyFoundation Diagnostic and Clinical Care Guidelines for PrimaryImmunodeficiency Diseases has proved to be one of theFoundation’s most popular publications. Produced toenhance probability of earlier diagnosis, improve healthoutcomes and increase access to specialized health careand optimal treatment, the guidelines offersunsurpassed information not only for patients withprimary immunodeficiency diseases, but also forpatient families and treating physicians.

Since the guidelines were first made available,numerous changes have taken place throughout the field of

medicine. Subcutaneous IgG administration is now more common; healthinsurance appeals require different input; and many other advancements in treatment andcare have resulted in a need for revised and updated information.

The Foundation has answered that demand by releasing a second edition of the guidelines.As with the first edition, Dr. Rebecca Buckley has again lent her editing expertise, and herstellar effort – along with an array of contributing expert immunologists - has resulted in oneof the most comprehensive publications available to the IDF community.

The second edition includes recommendations, strategies and essential information to assistphysicians in making educated decisions about appropriate healthcare for primaryimmunodeficiencies, as well as provide patients with the resources to deal more effectivelywith their physicians and with insurance providers.

The development and revision of the IDF Diagnostic and Clinical Care Guidelines was funded byan unrestricted educational grant from Talecris Biotherapeutics. This publication, like allIDF materials, is available at no charge to individuals. To get your copy, please visit the IDFWebsite at www.primaryimmune.org to download or order your copy, or contact IDF at800-296-4433.

The Immune Deficiency Foundation isproud to announce the birth of JohnStephen Boyle on Thursday, October 22,2009. The first grandchild of MarciaBoyle, the President & Founder of IDF,arrived at 9:34 am, weighing a healthy 6pounds, 13.7 oz and 20 inches long.Parents, John G. and Tara Boyle aredoing well and could not be happier.

Marcia, the beaming grandmother,pictured here, gushed, “Little Johnny isjust adorable, strawberry blond! Nothingprepared me for how amazing it feels tobe a grandmother—this is one of thehappiest days of my life. It is so excitingthat my little XLA baby is now a father.”

Save the Date!IDF Retreats - ForPersons Living withPIDD & TheirFamiliesJune 25-27

Doral ArrowwoodConference CenterRye Brook, New York

August 13-15Hotel Kabuki

San Francisco, California

Registration will begin in March2010. For updates and moreinformation, visit the IDF

Website atwww.primaryimmune.org

New Addition to the Boyle Family!

At the IDF 2009 National Conference inOrlando, over 30 different video testimonialswere recorded for our Reel Stories Channel, apatient-generated video community designed toencourage and empower fellow patients andtheir loved ones. The videos, which cover a widearray of issues and topics pertaining to PIDD,are available for viewing athttp://my.primaryimmune.org/reelstories.

If you would like to share your experiences withPIDD, we encourage you to record a video andupload it to the IDF Reel Stories page. Simplyvisit http://my.primaryimmune.org/reelstories,

click the “Browse” button to find the video youwant to submit and then click the “Upload”button to attach the file. Once the file hascompleted uploading, click the “Submit” buttonto finish.

The maximum file size allowed is 500 MB, andallowed extensions are: avi, mov, mpeg, mpg, flv,mp4, qt, wmv and divx. If you are havingtrouble or need assistance uploading a file,contact IDF at 800-296-4433 or contact AdamFreestone at afreestone@primaryimmune.org.

Reel Stories is sponsored by CSL Behring.

ADVOCATE | 3

Submit Your Reel Story

Medical InformationYou have the right to be fully informed about your diagnosis, the treatment options for your disease and the prognosis, interms that you can understand.

Choice of HealthCare ProviderYou have the right to choose medical personnel who can deliver quality healthcare for your disease state.

You have the right to request second opinions or consultations if you so choose without consequence.

Involvement in Healthcare DecisionsYou have the right to be fully informed regarding what is involved with your treatment options, procedures, and potentialcomplications, in a way that you can understand.

You have the right to participate fully in any decisions regarding your treatment and/or procedures.

You have the right to be informed of specific drug information such as IVIg/SCIg brand, dose, lot number, rate ofinfusion, expiration date as well as any special properties about each medication.

You have the right to choose a treatment that best suits your medical needs, regardless of insurance policies.

You have the right to refuse any drug, treatment or procedure.

Fair Treatment and Non-discriminationYou have the right to be respectfully treated and cared for from your doctors, health plan and any other healthcareproviders regardless of race, sex, nationality, religion, sexual preference, or ability/source of payment.

You have the right to be given the option of the Family and Medical Leave Act, based on the size of your employer, toaddress chronic absence from work due to a clinical condition.

Children in school are entitled to protection of their rights under Section 504 of the Rehabilitation Act of 1973.

You have the right to request to have an insurance case manager assigned to your medical case.

Privacy and ProtectionYou have the right to speak privately with your healthcare providers.

You have the right to confidentiality about your healthcare information.

You have the right to know what is in your medical record and have a copy of your own medical record.

You have the right to ask your doctor to change your record if it is not correct, relevant or complete.

GrievancesYou have the right to petition and request review of any complaint you have against your health plan, doctor, hospital orother healthcare personnel.

Created by the Immune Deficiency Foundation Nurse Advisory Committee 2009

Bill of Rightsfor Patients with Primary Immunodeficiency Disease

Rebecca H. Buckley, MD ChairDuke University School of MedicineDurham, NCZuhair Ballas, MDUniversity of IowaIowa City, IAR. Michael Blaese, MDNewtown, PAFrancisco Bonilla, MD, PhDChildren’s HospitalBoston, MAMary Ellen Conley, MDSt. Jude Children’s Research HospitalMemphis, TNCharlotte Cunningham-Rundles,MD, PhDMt. Sinai Medical CenterNew York, NYAlexandra H. Filipovich, MDCincinnati Children’s HospitalCincinnati, OH

Thomas Fleisher, MDNational Institutes of HealthBethesda, MDRamsay Fuleihan, MDChildren’s Memorial HospitalChicago, ILErwin Gelfand, MDNational Jewish Medical and ResearchCenterDenver, COVivian Hernandez-Trujillo, MDMiami Children’s HospitalMiami, FLSteven Holland, MDNational Institutes of HealthBethesda, MDRichard Hong, MDBiomosaicsBurlington, VTRichard B. Johnston, Jr., MDUniversity of Colorado School ofMedicineDenver, CO

Howard M. LedermanMD, PhDJohns Hopkins HospitalBaltimore, MDDavid Lewis, MDStanford University School of MedicineStanford, CAHarry L. Malech, MDNational Institutes of HealthBethesda, MDStephen Miles, MDAll Seasons Allergy, Asthma &ImmunologyThe Woodlands, TXLuigi Notarangelo, MDChildren’s Hospital and HarvardMedical SchoolBoston, MAHans D. Ochs, MDChildren’s Hospital & Regional MedicalSeattle, WAJordan Orange, MD, PhDChildren’s Hospital of PhiladelphiaPhiladelphia, PA

Jennifer M. Puck, MDUniversity of California, San FranciscoSan Francisco, CAJohn Routes, MDChildren’s Hospital of WisconsinMilwaukee, WIWilliam T. Shearer, MD, PhDTexas Children’s HospitalHouston, TXE. Richard Stiehm, MDUCLA School of MedicineLos Angeles, CAKathleen Sullivan, MD, PhDChildren’s Hospital of PhiladelphiaPhiladelphia, PATroy Torgerson, MD, PhDUniversity of WashingtonSeattle, WAJerry Winkelstein, MDBaltimore, MD

4 | FALL 2009

IDF Medical Advisory Committee

Congratulations are in order for the Primary Immune DeficiencyTreatment Consortium (PIDTC). The group was recently awarded aU54 grant supported through the National Institutes of Health. ThePIDTC brings together translational scientists, transplant physiciansand immunologists with a strong commitment and expertise in thediagnosis and management of primary immunodeficiency diseases(PIDD) to consider different treatment methods and provideimproved results to future patients.

“The Primary Immune Treatment Consortium will be counting on thesupport of the Immune Deficiency Foundation community,” saidMorton J. Cowan, M.D., the consortium’s Principal Investigator.“Through the cooperation of patients participating in our studies, wecan achieve our goal of disseminating our findings about thediagnosis and treatment of PIDD to clinicians, scientists, patients andparents. We are excited to be collaborating with IDF to furtherunderstand these diseases.”

Dr. Cowan is joined by Luigi Notarangelo, M.D., who serves as Co-Principal Investigator, and Jennifer M. Puck, M.D., Donald B. Kohn,M.D. on the PIDTC Steering Committee. Institutions that willparticipate include Cardinal Glennon, Cincinnati Children’s Hospital,Children’s Hospital Boston, Children’s Hospital Los Angeles,Children’s Hospital Memorial Chicago, Children’s Hospital ofPhiladelphia, Children’s Hospital Seattle, Duke Memorial Center,Memorial Sloan Kettering Cancer Center, NIH-NIAID, St. Jude’sHospital, Texas Children’s Hospital, UCSF Children’s Hospital.University of Minnesota, and Pediatric BMT Consortium (PBMTC).

Research will focus on studying severe combined immunodeficiency(SCID), Wiskott-Aldrich Syndrome (WAS) and chronicgranulomatous disease (CGD) – the three PIDDs that can be curedwith hematopoietic cell transplantation (HCT), enzyme replacementor gene therapy. The objectives of the research will include

characterizing the long termoutcomes and late effects inchildren with SCID, WAS and CGDwho undergo HCT. Additionally,the project will incorporate thedesign and implementation ofprospective clinical trials thatimprove care for children withPIDD and allow for training to beprovided to physician scientists inthe understanding and treatment ofPIDD. The research will determinecritical questions concerning HCTfor these disorders and aid in thedevelopment of prospective futureclinical trials.

The PIDTC’s pilot project will be a study focusing on newbornscreening for SCID in Navajo Indians to evaluate early diagnosis.With this initial project, the group is expecting to develop aprospective clinical trial of HCT for newborns diagnosed with SCID.

Other components of the grant work will include the development ofa PIDTC Website that will explain the objectives of the consortium,provide research and clinical information and will list links toongoing projects. The Website will also give information about centerlocations in each geographic area, as well as provide education,support and advocacy to families with affected children and thegeneral public.

For more information about the PIDTC program or the ClinicalTrials, please contact Elizabeth Dunn, Clinical Research Coordinatorfor the PIDTC at dunne@peds.ucsf.edu.

Comprised of a prominent group of physicians and scientists, theImmune Deficiency Foundation Medical Advisory Committee (MAC)supports the mission of IDF through the development of science-basedstandards for diagnosis and care for individuals with primaryimmunodeficiency diseases and their complications.

This passionate group of specialists promotes key research issues in aneffort to increase understanding of the pathogenesis and potential cure ofthese primary immunodeficiency diseases.

MAC members not only advance the diagnosis, treatment and/orimmunologic understanding of these diseases, but also represent IDF atscientific and policy events, participate in the Consulting Immunologistand Visiting Professor Programs, and graciously lend their time andexpertise to IDF program development and special projects.

The Immune Deficiency Foundation offers our appreciation andadmiration for these extraordinary individuals, and salutes the vitalcontributions made to our patient community.

Primary Immune Deficiency Treatment Consortium

Morton J. Cowan, M.D.PIDTC Principal Investigator

ADVOCATE | 5

A decade has passed since the ImmuneDeficiency Foundation first established theNurses Advisory Committee (NAC).Founded with the intent of improving thequality of healthcare and education providedby nurses for patients with primaryimmunodeficiency diseases, the NAC hasbeen immeasurably successful in itsendeavors.

In addition to increasing awareness ofprimary immunodeficiency diseases, the

NAC has been instrumental in expandingboth educational and peer supportopportunities for individuals and families.Thanks to an unrestricted grant from CSLBehring, the NAC has been an operativeforce in IDF educational programsthroughout the country.

For ten successful years, the NAC has alsobeen invaluable in their collaboration onIDF publications such as the IDF Guide forNurses on Immune Globulin Therapy for Primary

Immunodeficiency Diseases and the Bill of Rightsfor Patients with Primary ImmunodeficiencyDiseases.

Not only does IDF appreciate ourpartnership with the NAC, but we also takegreat pride in recognizing the dedication ofthese exceptional individuals. From anursing perspective, the NAC commitmentto the IDF mission is unequaled, and welook forward to that determined spirit fordecades to come.

IDF Nurse Advisory Committee

Rare disease patients face chronic, lifethreatening diseases that inevitablybring with them some of this country’shighest treatment costs. As a result,these individuals and their families cansometimes be forced into personalbankruptcy and poverty. Withthoughtful and reasonable healthcarereform, Congress can ensure this willnever happen, ever again.

The Plasma Users Coalition (PUC) wasfashioned in the belief that ourhealthcare system must provideaffordable, quality coverage for allAmericans. As the healthcare reformdebate intensifies, we have concernsregarding continued access to thespecialized, expensive care and therapiesfor individuals with rare diseases.

IDF was instrumental in organizing andproviding leadership to the PUC, agroup of national patient organizationsthat represent patients whose livesdepend on plasma-derived andrecombinant therapies. Members of thePUC are the Immune DeficiencyFoundation, the Alpha-1Association/Foundation, the Committee

of Ten Thousand, GBS/CIDPFoundation International, HemophiliaFederation of America, Jeffrey ModellFoundation, National HemophiliaFoundation, Platelet Disorder SupportAssociation and Patient ServicesIncorporated.

The PUC has identified six principlesthat are the top priorities for inclusionin healthcare reform:

Private Insurance Market Reforms -While we applaud the annual caps onout-of-pocket costs, we are concernedthat they are not adequate for the raredisease community. High out-of-pocketcosts and co-pays disproportionatelyimpact individuals with rare diseaseswhose therapies can be extraordinarilyexpensive and life-long.

Affordability - Securing reasonablypriced insurance and covering theuninsured is an important componentof healthcare reform. In addition,healthcare reform legislation must alsolimit deductibles and co-payments.

Access to Specialists - Individuals withrare diseases require services and care

from members of the medical professionwho have specialized knowledge of thediagnosis, treatment and managementof their disorders.

Access to Therapies - Individuals withrare diseases must have access to the fullrange of medically necessary treatmentsappropriate for their condition.Decisions regarding which treatmentsare most suitable must be reserved forthe physician in consultation with theindividual patient.

Comparative Effectiveness Research -The Coalition supports comparativeeffectiveness research that identifiestreatments and services for rare diseasesbased on comparative clinicaleffectiveness, rather than costeffectiveness, studies.

General Recognition of Rare Diseases -Payers and providers of health servicesmust recognize the unique and on-goingneeds of the rare disease community.

For more detailed information, visithttp://www.primaryimmune.org/advocacy_center/advocacy_center.asp.

Plasma Users Coalition CreatedA United Front for Rare Diseases in Health Care Reform

KimDuff, RN, BSN, ChairRainbow Babies & Children’s Hospital

Loris Aro, RNSt Michael’s Hospital

Amy Bellin, RN, CPNP-PCChildren’s Hospitals & Clinics of Minnesota

William Blouin, MSN, ARNP, CPNMiami Children’s Hospital

Maggi Dodds, RN, MS, CPNPTexas Children’s Hospital

Carla Duff, RN, BSN, CCRPUniversity of South Florida

Kristin Epland, FNP-C, Vice - ChairMidwest Immunology ClinicVanessa Howard, BSN, MSN, FNPSt Jude Children’s Research Hospital

Terry Raburn, RN, BSN, ACRNTexas Children’s Hospital

Jeanette Scott, BSN, RNSanta Clara Valley Medical Center

Debra Sedlak, CPNPDuke University Medical Center

Beth Younger, CPNP, PhDJohns Hopkins Hospital

Few aspects of the now raginghealthcare debate draw as muchattention as a denied claim that playsout in the public arena.

While such high-profile occurrencesprovoke the loudest outcries, it’s themillions of denied claims that seemrandom, feel arbitrary and are certainlymore commonplace than the mediadiscussion of, say, pre-existingconditions.

According to a report by the CaliforniaNurses Association (CNA), the state’slargest health insurers rejectedapproximately one-fifth of all medicalclaims made over the last seven years.

In a September press release, entitled“California’s Real Death Panels”, theCNA maintains that California’s sixlargest HMOs rejected more than 45million claims – 22 percent of all claims– for care from 2002 through June ofthis year. The rejection rates in just thefirst six months of 2009 ranged from ahigh of nearly 40 percent (PacifiCare) toa low of 6.5 percent (Aetna).

“With all the dishonest claims made bysome politicians about alleged ‘deathpanels’ in proposed nationallegislation,” Deborah Burger, RN, andco-president of CNA said in a statement,“the reality for patients today is a daily,cold-hearted rejection of desperatelyneeded medical care by the nation’sbiggest and wealthiest insurancecompanies.”

On September 4, as a result of the CNAfindings, California Attorney

General Jerry Brown launchedan investigation into theclaims-processing practices ofthe largest private insurers inthe state.

“These high denial rates suggesta system that is dysfunctional,”

Brown told the Los Angeles Times,“and the public is entitled to know

whether wrongful business practices areinvolved.”

Hindering that public right is the actualprocess in which claim-denial data isgathered. Statistics on how ofteninsurance claims are denied – and thereasoning behind the rejections – arecollected and analyzed by the insurancecompanies themselves. Even morealarming is California’s status as theonly state that requires insurancecompanies to provide those records toany state or federal agency.

It is, as Georgetown University HealthPolicy professor Karen Pollitz describes,“One of the dark corners of the blackbox that is private health insurance.”

Don DeMoro, a policy director for theCNA, told the Huffington Post that hereceived a phone call from the managedcare department after its press releasecame out.

“They said, ‘you couldn’t have gottenthis data from us. We don’t collect itourselves,’” DeMoro said. “‘The data isthere,’ I told them, ‘but it’s hard to find.’I walked them through the steps andwaited while they clicked through theirown website. Once they saw that thedata was there, they politely said, ‘Thankyou’ and hung up.’”

DeMoro’s declaration, however, as wellas the overall report citing the highpercentage of denials, has come underscrutiny from both the insurers andstate officials.

Lynne Randolph, spokesperson for theCalifornia Department of Managed

Health Care, insists the CNAmisrepresented the results of theirfindings, arguing that the number of‘claims denied’ not only include actualrejections, but also duplicate claims andclaims that were eventually appealedand accepted.

The insurance companies also maintainthe legitimacy of some denials, but alsosay that others were denied for‘technical reasons.’ The CaliforniaAssociation of Health Plans, the tradegroup for the state’s health insurers,agrees.

“We question the credibility of thisreport,” said Nicole Evans, spokewomanfor the trade association.

Insurance companies point to a numberof factors that may result in deniedclaims, including a filing with the wronginsurer, receiving services from an out-of-network provider or seekingexperimental procedures not covered.

IDF receives numerous calls fromindividuals regarding insurance claimdenials. Reasons for rejection rangefrom simple coding issues, incorrectDates of Services (DOS), and duplicateclaim submissions to not-so-simpledenials such as, “not consideredmedically necessary.”

If you have received an Explanation ofBenefits (EOB) from your insurancecompany, read the document carefullyto determine the reason for the denial.Your insurer may simply be requestingmore information about your claim. Ifso, gather the necessary information andresubmit. If the EOB is not asking foradditional information, then you shouldcontact the insurer and provider and askwhy the claim was denied. Be sure tonote the name of the person with whomyou spoke, as this information isimportant for future communications.

If the EOB states the claim was deniedbecause treatment is not consideredmedically necessary, it could be a resultof incorrect (or misinterpreted)insurance company guidelines.

6 | FALL 2009

CLAIM DENIALS: A

(Continued on page 7)

-by J. Doug Gill

ADVOCATE | 7

Commonplace OccurrenceAdditionally, the initial clinical work-upmay not have been completed prior tothe start of immunoglobulin (IG)therapy. In some cases, a second opinionby a clinical immunologist may beneeded.

Unfortunately, some insurancecompanies deny IG therapy for primaryimmunodeficiency until the insurerunderstands the rationale behind thisexpensive, life sustaining therapy. Thatjustification may have to be establishedthrough a consultation between theprescribing physician and the medicaldirector from the insurance company.

For help on how to appeal a claim, pleasevisit: http://www.primaryimmune.org/patiens_families/insure_howtoappeal.asp.

Tim Labas, assistant deputy director inthe California Office of Health PlanOversight, estimated that the actualdenial rate across the board in Californiais probably somewhere between 10 and20 percent. “That might still seem high,”

he said. “But there are legitimate reasonswhy claims are denied.”

If the two sides in the California ‘datadebate’ can agree on one thing, it is thatthe responsibility for a complete library ofdocumentation, as well as anunderstanding of what coverage yourpolicy offers, falls squarely on theconsumer – which in this instance is apatient who may be facing a chronic,debilitating or life-threatening disease.

Most importantly, an individual who hasbeen denied an insurance claim must beproactive in contacting the provider withany (and all) questions about the rejection.

In 2000, the Kaiser Family Foundationpublished a national survey that foundmore than 50 percent of respondents hadexperienced some type of issue with theirhealth insurance. Of those, only 2 percenthad issued a formal complaint. Nearly 90percent of participants could not namethe agency that regulates health insurancein their state.

In California, state officials said that alarge jump in claims denials raises a redflag for that insurance company. If sucha rise is noted, the state says it has theauthority to request more specificinformation from the provider inquestion.

The California Office of Health PlanOversight, however, cannot cite a singleexample of when it made such as arequest.

Apparently, there remains very littleinterest in illuminating those dark – andoft times dangerous – corners of theprivate healthcare system.

And for a patient with a primaryimmunodeficiency disease, the complex,chronic and expensive conditiondemands an honest and open glimpseinto the business practices of theirinsurer.

Be Proactive!� Keep copies of every blood test (especially the lab work done prior to immunoglobulin

therapy), CT Scans, prescriptions, infections, surgeries, hospitalizations, etc.� If you are not already in possession of such documentation, call your providers and request

the information.� Be sure to document the name of every person you speak with regarding your health insurance

problems.

I’ve Been Denied, Now What?� If your provider told you that your claim has been denied, request a copy of it.� Read the EOB carefully to determine the reason for the denial.� Call your provider to see if they have already started working on resolving the issue.� Call your Case Manager (if one has been assigned to you) and ask for their assistance.� Visit http://www.primaryimmune.org/patients_families/insure_howtoappeal.asp for

additional help.

ADVOCATE | 7

8 | FALL 2009

Billy Corgan is both a rock star and a Cubsfan. The leader of the Smashing Pumpkins,along with ten other die-hard followers ofChicago’s “Lovable Losers” baseball team,share stories of a century’s worth of woe andheartbreak in an Emmy-Award winningdocumentary entitled, “No Love Lost.”

Jordan Lee, on the other hand, is not a Cubsfan. Nor is the 24-year-old Seattle resident aworld-renowned musician, but the talentedgraphic designer can lay claim to his very ownrock star moment: accepting the Emmy forbeing part of the team responsible for theproduction of “No Love Lost”.

“We were thrilled just to be nominated,” Leesays, “and went to New York because wethought attending the ceremony would befun. Given our category and our competition,we weren’t really expecting to win.”

Jordan was responsible for the Website design– a homage to the iconic Wrigley Fieldscoreboard surrounding the videos thatfeatured the die-hard Cubs’ fans lamentabletales of World Series failure.

“No Love Lost” was up against industrystalwarts such as Topps Baseball, NFL.comand the network that was broadcasting theSports Emmys, ESPN.

“When they called our name it was like,‘wow’,” Jordan laughs, “We couldn’t believewe had beaten the odds... and the ‘big boys’.”

For Jordan Lee, however, beating the odds is ascenario with which he is all-too-familiar.Jordan has spent his entire life living with X-Linked Agammaglobulinemia (XLA).

XLA is an inherited immunodeficiencydisease in which patients lack the ability toproduce antibodies – the proteins that makeup the gamma globulin or immunoglobulinfraction of blood plasma.

“I was pretty much diagnosed before birth,”Lee tells me. “My grandmother wasdetermined to be the carrier. She had fivekids – one died not long after his firstbirthday.”

Knowing the risk of having a brother,maternal cousin or maternal uncle with XLA,Jordan’s parents pursued every medicalavenue available while preparing for hisarrival.

“I benefited from a great support network,”he shares. “My mom and dad made sure I hadthe best of everything – the best treatments,

the best doctors… I can’t define how hugethat is.”

Jokingly, I teased Jordan about hisexceptional graphic design talents, andwondered aloud if his primaryimmunodeficiency resulted in his spendinghis childhood indoors in front of a computerand away from the health threats posed fromthe public at large.

“You’re asking if my disease led to being acomputer geek,” he laughs, “and the answer isno. Growing up, I led a perfectly normal life. Iplayed baseball, football, basketball – Icouldn’t have been more active. Although, Ido remember that some days after school myclassmates would be running off to playwithout me… no time for playing when you’regetting your three-hour shots.”

While Jordan’s mates were playing withouthim, the future Emmy-winner wasn’t facinghis treatments alone. His younger brother –the two were born a year apart – was alsodiagnosed with XLA, and Lee says that havinga sibling with the same primaryimmunodeficiency allowed the boys to “dealwith it together.”

“And the treatments became as much a partof my life as brushing my teeth,” Lee adds.“It’s just one of those things – the way thechips fall.”

For Jordan, being educated as a patient washis first step in overcoming the stigmas oftenfaced by children that are seen as ‘different.’

“I never felt I was different,” Jordan confides.“I found out early-on that most people aresimply unaware of primaryimmunodeficiency diseases… everyoneautomatically assumed it meant HIV.”

“So I found that being able to explain mydisease helped bridge that gap,” he continues.“And at the same time, my explaining wasalso helping to either provide or raiseawareness about primary immunedeficiency.”

One doesn’t have to look far to find thecharacter trait that most defines the 24-year-old designer; a level of maturity that belies hisyoung age is what anchors Jordan Lee.

Whether he’s discussing his work, his Emmyor his XLA, Lee’s answers are measured,thoughtful and possess a degree of humilityrarely found in his peer group - especiallythose who have met with any measurablesuccess.

Through the course of our conversation hereminded me three times that “No Love Lost”was a team effort.

“Make sure you write that eight peopleworked on that project,” he chides.

Lee, an entrepreneur with his own graphicdesign business (jordanwlee.com), remainsgrounded almost in spite of his recent award-winning venture.

“I absolutely love what I do and I’m reallyproud of that project,” he explains, “But Iapproached ‘No Love Lost’ as I would any ofmy clients. Each and every project is just asnotable and just as important to me as thelast.”

Lee, mindful of his teamworkaccomplishment in regard to “No Love Lost,”wanted to be sure I noted the many medicalprofessionals that have played such a hugerole in his support network.

And while he thanks them all and notes theyare a “credit to his current health,” there isone man in particular that rates a higher levelof affection: Dr. Hans Ochs.

“Dr. Ochs has been a huge part of my life,”Lee confides. “I can’t remember him ever notbeing a part of it… I feel fortunate to havehad him as my doctor. Dr. Ochs doesamazing work for primary immune patients,”Lee explains. “And in his tireless efforts tohelp diagnose, treat and further understandXLA, he has sent samples of my blood all overthe world. I’m proud to be helping him in hisquest.”

For Jordan Lee, life with XLA, is a misnomer.To this Emmy-winning designer, it is simplylife, and he intends on enjoying it to thefullest.

“I just love to have an impact on people,” headds. “And I’m determined not to letanything hold me back.”

Emmy-WinnerJordan LeeJ. Doug Gill

SCID, Angels for Life Foundation hosted its first annual CharityGolf Tournament on March 28, 2009 in Lakeland, FL at The Clubat Eaglebrooke with 40 golfers participating. Kicked off with ashotgun start, the teams of four participated in a best ball“scramble” style competition. Great food was served, followed byan awards reception, however the highlight was when IDF BoardMember John Smith and his wife Heather, IDF volunteer, tookthe opportunity to tell their personal story.

“SCID, Angels for Life Foundation was founded in 2008 to honormy two sons, Brandon and Taylor Dahley, who were both bornwith SCID. While Brandon lost his battle with SCID in 1993, webenefited from the knowledge learned in Brandon’s short life.Taylor is now a teenager with a bright future,” Heather explained.“My husband John and I started this Foundation in order to raiseawareness of SCID in the hope that someday families will nothave to endure the loss of a child from this devastating disease.”

For many in attendance this was their first opportunity to learnabout SCID and PIDD. The proceeds, $12,000, were presented tothe IDF SCID Initiative.

Planning is already underway for next year’s event so mark yourcalendars for Saturday, March 2010. For more information onparticipation or sponsorship opportunities contact Heather at

ADVOCATE | 9

The Science Museum of Minnesota was the location of the IDF FamilyConference Day in St. Paul, MN on Saturday, November 7, 2009. 170 adultsliving with PIDD, parents of children with this condition and medicalpersonnel had the opportunity to hear medical presentations by Jason Raasch,MD and Tamara Pozos, MD, PhD. Meanwhile, kids, ages five and older,participated in interactive educational sessions, toured the museum and viewedthe film Titanica. Kim Isenberg, CSL Behring and Larry LaMotte, IDF,presented a session about being the one to make a difference by working withpolicy makers. In addition to receiving information about living with PIDD, theconference provided the opportunity for individuals of all ages to get-together,share with each other and realize that they aren’t alone.

John and Heather Smith, Judy Dean andTaylor Dahley

IDF Family Conference Day inSt. Paul, MN

Thumbs-up Rating!

IDFVolunteer, ErinWilliams Lea, visited the CSL Plasma center inKansas City, MO during the IDF Blue Jeans for Healthy Genes Program.

Heather@SCIDangelsforlife.com.To learn more about SCID, Angelsfor Life Foundation, visitwww.primaryimmune.org/you_can_help/idf_scid_initiative.htm.

SCID, Angels for Life was also therecipient of pledges for TimSchwarz’s “Stop SCID for Kids”run in the Chicago Marathon onOctober 11. Julie and TimSchwarz are the parents of four-year-old Caz, who was diagnosedwith SCID as an infant and theywanted to find a way to help otherfamilies affected by SCID. Despitehaving never run a marathon before, Tim trained hard and finished the 26.2-mile run in 4 hours and 22 minutes. His amazing efforts garnered pledges inexcess of $7,000 with more still coming in. Tim’s effort exemplifies what oneindividual can do to make a difference.

Ava and Caz Schwarz

Volunteer Activities

Plasma Center Visit

SCID, Angels for Life

10 | FALL 2009

On Friday, October 2, 2009, a bell-ringing ceremony tocelebrate Talecris Biotherapeutics launching an initialpublic offering of common shares was held at theNASDAQ market site in Times Square in NYC.

Talecris Biotherapeutics Prices Initial PublicOffering of Common Stock

Talecris Biotherapeutics Holdings Corp. (“Talecris” or the“Company”) today announced the pricing of its initial publicoffering of 50,000,000 shares of its common stock at a priceof $19.00 per share. Of the shares being offered, 28,947,368are being offered by the Company and 21,052,632 are beingoffered by the selling stockholder, Talecris Holdings, LLC.Talecris Holdings, LLC is owned by Cerberus-PlasmaHoldings, LLC, the managing member of which is CerberusPartners, L.P., and limited partnerships affiliated withAmpersand Ventures. The underwriters have the option topurchase from the selling stockholder up to an additional6,000,000 shares of common stock. The common stock isexpected to begin trading on the Nasdaq Stock Market LLCon October 1, 2009 under the ticker symbol “TLCR.”

Excerpted from Talecris News Release September 30, 2009.

INDUSTRY NEWS

The CSL Plasma team raised over $79,000 for the Immune DeficiencyFoundation (IDF) as part of the “Blue Jeans for Healthy Genes”Campaign. The group shattered its $45,000 total from last year withhelp from employees, donors, vendors and the community.

CSL Plasma embraced the Think Zebra! theme as each center’sCommunity Relations Representatives helped coordinate campaignswith a zebra look and striped appeal. They then collaborated with theIDF to bring in patient speakers to inspire employees and encouragedonors to contribute to the campaign.

According to Craig Shelanskey, Vice President U.S. Plasma Operations,“We focused on two very distinct messages. First, the plasma we collect,test and process goes to make therapies that treat PrimaryImmunodeficiency Diseases and second, donating to the IDF campaignis another way to help patients and their families through supportservices, education and research.”

CSL Plasma has ZEBRA-RIFFIC IDF Campaign

Grifols Breaks Ground on New National Testing Laboratory

Grifols SA (Grifols), a global healthcare company based in Barcelona, Spain,broke ground on a new national testing laboratory in San Marcos, Texas at aceremony that included Federal, state and local officials. Construction of thelaboratory represents the first phase of a multi-phase expansion that includesadditional warehousing and production facilities. When completed, the newfacilities will represent a $76 million capitol investment and will complementGrifols existing facilities in Los Angeles, California and Barcelona, Spain.

Texas has been an important business hub for Grifols for many years.Currently the state is home to 17 Grifols donor centers and the company’scurrent testing laboratory in Austin. Grifols employs more than 600 Texansand contributes more than $80 million annually to the State’s economythrough payroll and other business expenses. Plasma and intermediateproducts are often shipped to the Company’s Barcelona facilities through theport of Houston. Construction of the new laboratory, warehousing andproduction facilities in San Marcos will secure Texas as an essential long-termbusiness home for the company.

Excerpted from Grifols News Release October 16, 2009.

Front row (l to r) JohnWalsh and DianeWalsh, Alpha-1Foundation; Marcia Boyle, IDF; Larry Stern,TalecrisBiotherapeutics; Estelle Benson, GBS/CIDP FoundationInternational; Back Row (l to r) John Boyle, IDF;Robert Benson, Patricia Bryant, GBS/CIDP FoundationInternational; and Ken Irvine, Alpha-1 Foundation.

ADVOCATE | 11

WITH GRATITUDE

These donations help IDF to improvethe diagnosis and treatment of patientswith primary immunodeficiency diseasesthrough advocacy, education andresearch. If you would like to make adonation, please go on our Web site,www.primaryimmune.org and click the“please donate today” picture in the topright corner. You can also contact us inany of the following ways:

Phone: 800.296.4433 or 410.321.6647E-mail: idf@primaryimmune.org

Mail: IDF, 40 W. Chesapeake Avenue,Suite 308, Towson, MD 21204

“When I was first diagnosed with a primaryimmunodeficiency in 1974, there was no one whounderstood. Then I found IDF and I truly believethat I have lived long-term with this diseasebecause of IDF. Now, I don’t feel alone. IDFreally made a difference in my life and I wanted tocontinue to do something meaningful for theFoundation so I decided to make a planned giftto IDF.”

Frances Massa of New Jersey, one of IDF’sdedicated volunteers, doesn’t shy away fromdiscussing plans for her final wishes.

“IDF has been so essential to me over the years, asI’ve learned to live with my primaryimmunodeficiency disease. After everything IDFhas done for me, I felt it was critical to make aninvestment in the Foundation’s future. Bynaming IDF as a beneficiary in my will, I ammaking a statement,” adds Fran.

IDF is proud of what we do. And we hope tocontinue serving as a resource for patients andfamilies with primary immunodeficiency for avery long time, which is why we are planning forour future.

You can be a part of our legacy and help ensurethe future of IDF through a planned gift orbequest to IDF.

Most people leave property, money, or personalbelongings behind when they die, even if they donot have a great deal of wealth. Even anindividual with a small estate can arrange to leavea charitable bequest. This can be arranged inseveral different ways. You can set aside a specificdollar amount, leave a percentage of your estate,or leave any assets left over after your family hasbeen provided for. Some donors choose to leavea paid life insurance policy or other financialinvestments, such as stocks, bonds, or CDs.

In addition to making a difference to IDF,bequests and estate gifts may provide significanttax benefits to you and your family. Consult a taxprofessional for details.

Frances is quick to encourage others to includeIDF in their estate plans.

“It’s critical for patients to give to IDF. IDF is soimportant to thousands of patients just like me,and there are so few of us, that we must sticktogether in supporting IDF.”

For more information on including IDF in yourestate plans, please contact Allison Mayberry,Director of Development, atamayberry@primaryimmune.org or at443.632.2555. You can be a part of our future.

Making an Investment in IDF’s Future

In medical school, many doctors learn the saying,“when you hear hoof beats, think horses, not zebras.”Most physicians are taught to focus on the likeliest possibilitieswhen making a diagnosis, not the unusual ones. However, sometimesphysicians need to look for a zebra. Primary immunodeficiency patients arethe zebras of the medical world. So IDF says THINK ZEBRA!

IDF makes a real difference to thousands of ZEBRAS, however, we cannot do it without you! Join theherd and make a generous gift today to assure IDF can continue to advocate for the needs of those wholive with primary immunodeficiency diseases.

With IDF leading the pack, you are never alone!

Please visit our Website at www.primaryimmune.org or call 800.296.4433to make your gift today!

TheImmune Deficiency Foundation

says THINK ZEBRA!this holiday season!

Honorary andMemorial Gifts8/5/09 – 11/19/09

Gifts In Honor OfCostas AntoniouDavid, Eve and Dina FarrellMr. and Mrs. Michael FenigerJenny GardnerTara GuetzNeil HersonJaryd LeadyBarbara MonaghenNiko and Zachary NishinakaBrent RoutmanElliot UeckerJohn WettsteinStephen Whisenand

Gifts in memory of:Allene AtwoodBob BaconFrederick BarlettaRaymond ConnJoseph DellorsoStephen Dorcich, Jr.Alvin KendisGeorge KeylounMichael LarsonTom MarbachEric MarderMartha McConnellDiana “Tish” ObalJeannette PuretzLewis RaderNoel Shorten and Jason Stewart IIIJan StratiffCheryl TeetselJ. Addison TrilloIrene WilkersonKimberly Williams

40 West Chesapeake AvenueSuite 308Towson, MD 21204

IMMUNE DEFICIENCYFOUNDATIONBOARD OF TRUSTEESMarcia Boyle, Chair

Barbara Ballard, Secretary

Douglas R. Bell

John Boyle, PhD

Rebecca H. Buckley, MD

Lisa Codispoti

Carol Ann Demaret

Steven Fietek

Terry Halper

Robert LeBien

Brian Rath

John Seymour, PhD, Vice-Chair

John Smith

Non-Profit Org.U.S. Postage

PAIDSouthern MD

Permit No. 305

For an updatedIDF Calendar of events, visit

www.primaryimmune.org/idfcalendar.

Supporting IDF at the Highest LevelBecause primary immunodeficiency diseases arechronic conditions, continuity in the core IDFprograms is critical. Individuals living with primaryimmunodeficiency diseases - as well as their families -need to know that these services will be available. Theyneed to know they can consistently count on IDF.

IDF Core Services includes our essential programs likedirect patient services— patient advocacy, peer support,local patient meetings and volunteer activities. Medicalprograms like our Consulting Immunologist Programand the LeBien Visiting Professor Program, as well asmedical meetings and exhibits are included. Vitaladvocacy efforts to help ensure access to qualityhealthcare and support research priorities also fall intothis category.

To continue to offer these indispensable services, IDFrelies on the generosity of several organizations forprogram funding. IDF Core Service Sponsors arededicated partners that support IDF at the highestlevel.

2009 IDF Core Service SponsorsBaxter Healthcare

CSL Behring

Grifols

lgG America / ASD Healthcare

Octapharma

Talecris Biotherapeuticss

2009 Home Health SponsorBioRx

These sponsors make an enormous difference in theFoundation’s ability to plan and provide long-termresources on behalf of people with primaryimmunodeficiency diseases. IDF greatly appreciatesthese devoted sponsors and their commitment to ourmission.