DidYouKnow

10 April-May 2014 www.IGLiving.com IG Living!

IG Living is hosting its fourth annualessay contest open to IG patients andtheir caregivers ages 18 and older.We are asking entrants to start theiressay with the same phrase. To par-ticipate in the contest, begin youressay by completing this sentence:If I had a chance to live illness-freefor 72 hours, I would ...

Guidelines for essay submittal areas follows:

• Write no more than 600 words,and be sure it is typed and double-spaced.

• Include a title for your essay, andinclude the author’s name, completeaddress, email, phone number andword count.

• Submit your entry electronicallyas a Microsoft Word attachment toeditor@IGLiving.com, or submit itby mail to: IG Living Essay Contest,41093 County Center Drive,Temecula, CA 92591, Attention:Carla Schick.

• Mail your entry by June 1, 2014(must be postmarked by that date).IG Living’s judges will rate the

entries on a scale of one to 10 on fivecriteria:

• Organization (the writing flowslogically with clear structure)

• Mechanics (spelling, capitaliza-tion and punctuation are correct)

• Content (subject is discussedclearly, and the reader is left with afinished feeling)

• Creativity (content is compellinglyinteresting for our audience)

• Effectiveness (the whole entryis effective in its purpose for ouraudience)

Winners will be announced onJuly 1. The first-place winner will beawarded an iPad mini, and his or heressay will be published in IG Livingmagazine. Second- and third-placewinners will be awarded a $50 giftcard, and their essays will be pub-lished in an IG Living blog.

This is your opportunity to getpublished in IG Living magazine!Submit your entry by June 1.

Contest

Enter IG Living’s Fourth Annual Essay Contest!

A team led by the Immune DeficiencyFoundation (IDF) has been awardedfunds by the Patient-CenteredOutcomes Research Institute (PCORI)to develop and expand a health datanetwork that will be part of PCORnet,the National Patient-Centered NationalClinical Research Network. IDF’s PIConnect data network is one of 29 thatwere approved for a total of $93.5million from PCORI on December 1 toform a national resource to boost theefficiency of health research.

PCORnet is a secure national datanetwork that will integrate data fromthe 29 networks to provide access to alarge amount of diverse and nationallyrepresentative health information thatcan support a range of study designs. It

is intended to reduce the time andeffort needed to launch new studiesand to focus research on questions andoutcomes useful to patients and thosewho care for them. PCORnet also willjoin together networks operated byboth patient communities and healthsystems to interact and jointly deter-mine research priorities such as theselection of specific studies to support.

Led by principal investigatorKathleen Sullivan, MD, PhD, ofChildren’s Hospital of Philadelphia,the IDF-led team will use the PCORIfunds to expand and improve itssystems, work to standardize its dataand be part of the process to developpolicies governing data sharing andsecurity and protection of patient

privacy. It also will refine its network’scapacity to engage and recruitpatients and other stakeholders inter-ested in participating in research.

“Currently, two unique data sets forprimary immunodeficiency diseases (PI)exist: the IDF eHealthRecord, an elec-tronic personal health record forpatients with PI, and the United StatesImmunodeficiency Network patient-consented registry, a data-validatedregistry of clinical information,”explained Dr. Sullivan. “For thosepatients who choose to participate,PI Connect will provide the oppor-tunity to meld these two data sets tomaximize the breadth of data on PIand accelerate understanding andtreatment of these rare diseases.”

Research

IDF Awarded Funds to Develop Health Data Network

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On Feb. 3, the Department ofHealth and Human Services (HHS)issued a final rule that amends theClinical Laboratory ImprovementAmendments of 1988 (CLIA) regula-tions to allow laboratories to give apatient, or a person designated bythe patient (his or her personal repre-sentative), access to the patient’scompleted test reports on thepatient’s or patient’s personal repre-sentative’s request. At the same time,the final rule eliminates the excep-tion under the Health InsurancePortability and Accountability Actof 1996 (HIPAA) Privacy Rule to an

individual’s right to access his or herprotected health information when itis held by a CLIA-certified or CLIA-exempt laboratory. While patientscan continue to get access to theirlab test reports from their doctors,these changes give patients a newoption to obtain their test reportsdirectly from the lab while maintain-ing strong protections for patients’privacy. “The right to access personalhealth information is a cornerstoneof the HIPAA Privacy Rule,” saidHHS Secretary Kathleen Sebelius.“Information like lab results canempower patients to track their

health progress, make decisions withtheir healthcare professionals, andadhere to important treatmentplans.”

The final rule is issued jointly bythree agencies within HHS: theCenters for Medicare and MedicaidServices (CMS), which is generallyresponsible for laboratory regulationunder CLIA, the Centers for DiseaseControl and Prevention, which pro-vides scientific and technical adviceto CMS related to CLIA, and theOffice for Civil Rights, which isresponsible for enforcing the HIPAAPrivacy Rule.

Legislation

HHS Strengthens Patients’ Right to Access Lab Reports

DidYouKnow

12 April-May 2014 www.IGLiving.com IG Living!

DidYouKnow

Researchers at the Yale School ofMedicine have identified a geneticmutation that causes lupus, anautoimmune disease without a knowncure. In the study, the researchers didnot intend to investigate the genetics

of lupus, but instead tried to identifyhow a DNA repair mechanism distin-guishes between correct and incorrectDNA bases. To answer this question,they mutated the DNA repair genePOLB in mice thinking the mice wouldexhibit symptoms of cancer. Insteadof cancer, the researchers began tosee symptoms of lupus. Most con-spicuously, they noticed that the micehad elevated levels of antinuclearantibodies, a classic marker of lupus.“For a long time, people thought thatmutations in DNA repair genes couldbe linked to lupus, and this is actually

one of the first demonstrations that amutation in a DNA repair gene is actu-ally linked to lupus,” said Joann Sweasy,study author and professor of therapeu-tic radiology and genetics at the YaleSchool of Medicine. Sweasy believesthe reason for this elevation might bethat the mutated POLB gene was creating antibodies that attacked theanimals’ own cells, leading to lupus.

The findings hold promise forhelping physicians diagnose lupusand researchers develop treatments.The study was published in CellReports on Jan. 16.

Research

Genetic Cause of Lupus Is Found

AutoimmuneCorner

A new treatment that boostsimmunity to the Epstein-Barr virus(EBV) may benefit patients withmultiple sclerosis (MS). The Australianstudy published in the MultipleSclerosis Journal tested a new treat-ment that boosts the ability of CD8 Tcells in the immune system to fightEBV. The treatment involves takingsome of the patient’s blood fromwhich T cells are harvested andgrown in the lab together with anEBV vaccine. The boosted cells arethen transferred back to the patientintravenously. The researchers believethe approach, called adoptiveimmunotherapy, could potentiallytreat MS and other chronic autoim-mune diseases.

One patient in the study was a 43-year-old man who has been unableto walk or transfer himself without

assistance since 2008. He had his firstMS attack in 1994 and was diag-nosed with relapsing-remitting MS in2000, which later developed into sec-ondary progressive MS. After beinggiven a six-week course of the treat-ment, he started to show signs ofclinical improvement within twoweeks of starting treatment, includ-ing improvements in attention, mem-ory, thinking and hand function, areduction in fatigue and painfulspasms, and increased work produc-tivity. An MRI scan of his brainshowed decreased disease activity,his cerebrospinal fluid showed adecrease in antibodies, and at thelatest follow up at 21 weeks, therewas some improvement in legmovement. The therapy appearedto produce no adverse side effects.

“The beneficial effect of boosting

immunity to EBV by this treatmenthighlights the importance of impairedimmunity to EBV in the developmentof MS,” said Michael Pender, aprofessor at the University ofQueensland School of Medicine,Brisbane. “We believe the treatmentcorrects the impaired CD8 T cellimmunity that allowed EBV infectionto cause MS.”

The researchers say the treatmentnow needs to undergo a clinical trialto test its safety and effectiveness ina larger sample of patients withvarying forms of MS. In February2013, Medical News Today reportedhow another team of researchers inthe U.S. discovered new clues to EBVthat they hope will help researchersexplore unexplained links betweenEBV, autoimmune diseases, malariaand cancer.

Research

Immune Treatment for MS Shows Promise

DidYouKnow

Imagine caring for your child with hemophilia with no factor,

refrigerator, running water, electricity, or transportation to a clinic.This is the reality for thousands of families in developing countries.For just $20 a month, you can help an impoverished child with hemophilia. Become a sponsor today!

www.saveonelife.net / contact@saveonelife.netCaring for people with hemophilia around the world—one at a time.

The Neuropathy Action Foundation

(NAF) is hosting its 8th annualNeuropathy Action Awareness Dayon Wednesday, June 11, at theIntercontinental Los Angeles/CenturyCity Hotel in Los Angeles, Calif. Theevent provides an opportunity forpatients to interact with otherpatients, providers and exhibitors.Sessions will focus on traditional andalternative diagnoses, treatmentoptions, sleep disorders, diabetes andmedical laws. The event also includesa sit-down luncheon, exhibit area, acelebrity speaker, elected officials anda silent auction. The cost is $20 for

patients and caregivers. A registrationform can be found on the NAF websiteat www.neuropathyaction.org.

Individuals who are unable toattend in person, can view the eventvia live streaming on the Internetfree of charge. Those individuals alsowill be able to ask questions ofspeakers and receive answers in realtime. And, since the event will berecorded, it can be watched onanother date on the NAF website.The link to view the event online islocated on the registration form.More information can be obtainedby calling (877) 512-7262.

Meeting

8th Annual Neuropathy Action Awareness Day Is June 11th

For over threeyears, the IG Livingblog has givenvoice to the lifeexperiences ofpatients and care-givers in the IGcommunity. Now,the best of thesereflections is being captured in a newbook titled Life With IG: Inspirationaland Heartfelt Perspectives from theFront Lines of Chronic Illness. Thehighly anticipated eBook will beavailable for purchase and downloadlater this spring.

Resource

IG Living Publishes First eBook!