IG Living October-November 2017
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October-Novembervember 2017 IGLiving.com Managing Changesges in Senior Care Traansitioning IG Coverage too Medicare Understanding MannoseMannose-Binding Binding Mediccal Intervention IG Paatient Care Lectin Deficiencyy for DeDepressionepression in Nursingng Homes On IGLiving.com Feaatures an easy- to-nnavigate design Indepth content onn IG-treated diseases annd treatment Cononnnnectnne withh oouurur Pattiiieeent Advocateee,, AAbbbbie Cornett RReeaead weeklyklylyy bblogs about isssues relal tted d to living with cchchrhroononionic illnessnessessessss Valuablee Resourcees and more On Facebook Findd timely and relevant informao tion posted dailyy, providing a venue foro connnecting with others in the IG community. On the Go contents October-November 2017 5 Editorial The Challenges of Aging with PI By Ronale Tucker Rhodes, MS 18 Moving Aging IG Patients into 6 Abbie’s Corner Nursing Homes IDF Says Goodbye to a Legendary Leader By Abbie Cornett and By Abbie Cornett Roger H. Kobayashi, MD 7 Faces of IG From our Facebook page 22 Transitioning IG Coverage By Abbie Cornett to Medicare By Michelle Greer, RN, and Leslie Vaughan, RPh 26 Chronic Illness and Depression By Trudie Mitschang 8 Ask the Experts Healthcare professionals’ 33 Understanding Mannose- responses to patient questions Binding Lectin Deficiency By Dana Henry 9 Immunology 101 DiGeorge Syndrome: Further Discussion of Neurologic/ Behavioral Issues By Terry O. Harville, MD, PhD 42 Product Guide 10 Clinical Brief Itching for Relief Immune Globulin Differentiation By Trudie Mitschang By Elissa Ritt, DHSc 44 Book Corner 12 In the News New and useful reading Research, science, product 46 Resource Center and insurance updates Community foundations, associations, forums and other resources Advertising in IG Living IG Living Magazine is read by 30,000 subscribers who are patients that depend upon immune globulin products and 36 Let’s Talk!—Chelsey Safken their healthcare providers. For information about advertising in IG Living, download a media kit at igliving.com/ By Trudie Mitschang Advertise.aspx. Or contact [email protected]. About IG Living 38 Patient Perspective — Smile and IG Living magazine brings together patients, advocates and caregivers in the immune globulin (IG) community. the World Will Smile with You IG Living, (ISSN 1949-4548), published bimonthly, is a community service provided by FFF Enterprises, 44000 Winchester Road, By Stacy Oliver Temecula, CA 92590, (800) 843-7477 x1362, fax (951) 699-9655. Subscriptions to IG Living are free, and readers may subscribe at IGLiving.com or by calling (800) 843-7477 x1351. 39 Life as a 20-Something — The opinions expressed in IG Living are those of the authors alone and do not represent the opinions, policies or positions of FFF Enterprises, the Board of Directors, the IG Living Advisory Board or editorial staff. This material is provided for general infor- An Accessible Apartment mation only. FFF Enterprises does not give medical advice or engage in the practice of medicine. FFF Enterprises under no cir- cumstances recommends any particular treatment for any individual and in all cases recommends that individuals consult with By Ilana Jacqueline a physician before pursuing any course of treatment. All manuscripts should be submitted in MS Word, in Arial font. Manuscripts should be between 650 and 1,300 words in 40 Parenting — Helping length, with unjustified margins and without any other formatting. Submission guidelines are available for download from the Children Understand Contact Us page on IGLiving.com. Email manuscripts to [email protected]. IG Living retains the right to edit submissions. The contents of each submission and their accuracy are the responsibility of the author(s) and must be original work that has Long-Term Illness not been, nor will be, published elsewhere, without the written permission of IG Living. A copyright agreement attesting to this and transferring copyright to FFF Enterprises will be required. Acceptance of advertising for products and services in IG By Jessica Leigh Johnson Living in no way constitutes endorsement by FFF Enterprises. ©2017 FFF Enterprises Inc. 4 IG Living | October-November 2017 | IGLiving.com UP FRONT Our mission is to support the IG community through education, The Challenges communication and advocacy of Aging with PI A community service from FFF Enterprises, Inc. SINCE THE FIRST discovery of a primary immunodeficiency (PI) disease (agamma- Advisory Board globulinemia) in 1952, the number of individuals diagnosed with PIs continues to Bob Geng, MD, MA expand rapidly. Today, there are more than 200 different forms of PI affecting approxi- Assistant Professor, Division of Allergy & Immunology 1 mately 500,000 people in the U.S.And, as the prevalence of PI grows, so does the number University of California, San Diego of discoveries about them, including the molecular causes. Currently, scientists have identified Erika Lawrence, PhD 320 molecularly defined PIs, with 22 genes known to be the cause. And, it is anticipated Associate Professor that as genetic research continues, some 500-plus genes will be identified. 2 Department of Psychology What does all this mean? First and foremost, as the causes of PIs are discovered,there will University of Iowa be more targeted therapies developed to keep PI patients alive for far longer than previously Todd Levine, MD Director, Department of Neurophysiology possible. And, while this is extremely good news, it also brings with it some challenges. One Good Samaritan Hospital, Phoenix that many immunologists are dealing with more frequently is how to transition senior PI Assistant Professor of Clinical Neurology patients into nursing homes equipped to deal with the special care they require. On the ground University of Arizona floor of this issue is immunologist Roger H. Kobayashi, who has co-authored withIG Living’s Fred Modell patient advocate, Abbie Cornett, the article “Moving Aging IG Patients into Nursing Homes.” Co-founder of the As they explain, because nursing homes cater to seniors, they are equipped to deal with the Jeffrey Modell Foundation common chronic conditions this population typically faces. But, PI differs by far from most of Marc Riedl, MD, MS those illnesses. Not only do susceptible PI patients have to be gravely concerned about infectious Associate Professor of Medicine diseases frequently circulating in nursing homes, but they have the added worry about how their Division of Rheumatology, Allergy & Immunology University of California, San Diego immune globulin (IG) treatment may be affected — particularly if they are treated at home. Dr. Kobayashi’s and Abbie’s advice concerning some very specific items to consider when choosing Publisher Patrick M. Schmidt a nursing home offers help to this growing PI demographic. Editor Ronale Tucker Rhodes, MS An equally challenging issue for aging patients treated with IG is insurance. At age 65, Assistant Editor Cheryl Brooks Art Director Allan Bean patients must enroll in Medicare, even if they have employer-sponsored insurance coverage. As our article “Transitioning IG Coverage to Medicare” explains, this transition “can be more complex than IG therapy!” As an update of an article topic that is covered every two years in Contributing Writers IG Living, it reflects a substantial number of changes to Medicare reimbursement. Individuals Abbie Cornett must be very careful to choose the Medicare plan that will provide the best reimbursement, Michelle Greer, RN Terry O. Harville, MD, PhD which will depend primarily on their diagnosis (PI or another), since coverage differs for each. Dana Henry In addition, we report on legislative issues that have complicated the reimbursement process Ilana Jacqueline for at-home treatment. Jessica Leigh Johnson The challenges PI patients face day in and day out are hard enough, without the added Roger H. Kobayashi, MD Trudie Mitschang burden of mental stress that can lead to depression. Indeed, as our article “Chronic Illness and Stacy Oliver Depression” highlights, approximately “one-third of individuals with a serious medical Leslie Vaughan, RPh condition experience symptoms of depression.” Considering this, it is hoped that patients will benefit from this article that explains the warning signs of depression, as well as outlines various treatment options. As always, I hope you gain insight from the information presented and enjoy this edition of IG Living. Ronale Tucker Rhodes, MS ©2017 FFF Enterprises Inc. All rights reserved. Please direct editorial, advertising and marketing communications to 1. National Institute of Allergy and Infectious Diseases. Primary Immune Deficiency Diseases (PIDDs). Accessed at www.niaid.nih.gov/diseases- 44000 Winchester Road conditions/primary-immune-deficiency-diseases-pidds. Temecula, CA 92590 2. Advances in Primary Immunodeficiency: Is It All in the Genes? 2017 Immune Deficiency Foundation National Conference Breakfast Symposium. Phone: (800) 843-7477 Email: [email protected] IGLiving.com ABBIE’S CORNER IDF Says Goodbye to a Legendary Leader By Abbie Cornett I’VE ALWAYS ENJOYED attending materials for patients and their families. national per-visit low-utilization payment the biannual Immune Deficiency Today, these materials are the leading amount under the prospective payment Foundation (IDF) conference. It is always sources of information for patients and system for home health services. held at an exciting location, and it pro- families worldwide. But, Marcia didn’t • Newborn screening for