A nonprofit association bringing a national focus to autoimmunity, the major cause of chronic diseases

Vol. 23 No. 3, September 2015

President/Executive Director’s message — Virginia T. Ladd Autumn greetings! This vibrant season under the direction of AARDA Informatics Director Aaron Abend with ushers us into even more activities than we cooperation from members of the aforementioned NCAPG. have seen over the rather unusual summer l Education and Patient Services continue to be very important months. Let me give you a quick overview. as the public forums schedule for this fi scal year is nearing completion l Advocacy efforts have increased and new patient education brochures are being reviewed. over the past months. The challenging issues l Fun and Fundraising - Now, lest you think that all of our surrounding affordable health care and the activities are lacking lightheartedness, I’ll remind you that our “Linking new biosimilars have demanded our attention. Together for a Cure” Autoimmune Walks are very much alive and well. On behalf of AARDA and our members, I have spoken out via widely The Los Angeles Walk is being planned by Haley Ramm, of the ABC published opinion pieces. We do need to be heard. Family Channel show “Chasing Life,” with the help of Kellie Martin. Advocacy has been heard also in Congressional briefi ngs which Haley, who also is giving TV support to our Pajama Challenge, has joined we have sponsored with our friends in the National Coalition of Kellie as an AARDA national spokesperson. AARDA Treasurer John Autoimmune Patient Groups (NCAPG) and others. Kaiser and his team have scheduled their Chicago-area “Linked Fore a AARDA Board member Richard Hodge represented AARDA at the Cure” golf event for September 21. Yes, the serious side is fundraising; United Nations World Health Organization (WHO) Meeting, in Geneva, but the fun side is camaraderie. Switzerland, on June 16. Excerpts from Rich Hodge’s report are included Please note: New AARDA staff member Deb Patrick is searching in this newsletter. out sites and coordinating efforts for additional Autoimmune Walks. AARDA was represented at the Advocacy Day sponsored by the Anyone wanting to discuss possibilities can contact Deb at dpatrick@ Partnership to Fight Chronic Disease by AARDA Project Manager aarda.org or 586-776-3900. Sharon Harris, Vice Chair of the Board Dr. Stanley Finger, Board And another happy note: The annual Detroit-area Derby Luncheon Secretary Michelle Ouellet, and Board members Julia Pandl and Linda and Silent Auction committee meetings get underway this month with Pesonen. Michelle Ouellet and Board member Michael Quinlan veteran committee members attended the Congressional Briefi ng on autoimmune eye disease which plus extra chairs ready for any we cosponsored with the Alliance for Eye and Vision Research. newcomers. It’s a lively group! Acorns to mighty With the support of Board members Nona Bear and Richard In the “acorns to mighty oaks - we believe! Hodge, we are developing a draft of AARDA’s policy on Step Therapy for oaks” category, the contributions Board approval. to our National Autoimmune Starting with an initial l Research continues to have our support as we contribute funds Diagnostic and Treatment $200--our tiny acorn--the for Johns Hopkins University autoimmune liver research, thanks to Center are still in the acorn stage, grassroots fund for a National generous contributions from the Scoby Family Foundation and past but we see signs of germination. Autoimmune Diagnostic and Treatment founding support from The Gail I. Zuckerman Foundation; renewal Are you taking part in this Center is looking for additional of the anonymously funded O’Leary-Wilson Autoimmune Disease amazing burst of energy? contributions to prompt that acorn to Fellowship at Johns Hopkins; and grants for six summer diversity As usual, this is only germinate. The mighty oak is within, Johns Hopkins research students. These are in addition to the “Young a brief glimpse of what’s just waiting to come forth. Yes, we Investigator” grants at Massachusetts General Hospital, Johns Hopkins, happening at AARDA. With know that oak will need millions to and Feinstein Institute. the active support of you, our grow to fruition; but since it took We are looking forward to our fi rst scientifi c colloquium on family and friends, we can only a donated offi ce and canister “Neuropsychiatric Manifestations of Autoimmune Diseases” to be held keep this organization on a collections at K-Mart to start AARDA, in November. This roundtable gathering is being organized by AARDA roll. On behalf of all of us at who says that dreams don’t come true? Scientifi c Advisory Board Chair Dr. Betty Diamond and Chair Emeritus AARDA and the 50 Million That fi rst $200 has now Dr. Noel R. Rose. whom we represent, I say grown to $26,682.92. We urge our We also can report that our scientifi c round table on “Eosinophils, Type THANK YOU. AARDA friends to make their faith II Immunity and Autoimmune Disease,” held in June, was very well received. With appreciation, contributions, large or small. The little acorn is waiting! The Autoimmune Registry Network (ARNet) continues to grow Virginia InFocus, a quarterly newsletter of the Affordable Care Act still needs fixing - Amercian Autoimmune Related Diseases Association, Inc. an editorial by Virginia Ladd, Roanoke Times, July 23, 2015 (DBA Autoimmune Diseases Association) 22100 Gratiot Avenue, East Detroit, MI 48021-2227 President Obama’s signature accomplishment lifesaving drugs to patients who can’t afford Phone 586-776-3900; Fax 586-776-3903; E-mail: [email protected]; Web: www.aarda.org --the Affordable Care Act--is here to stay. the out-of-pocket payments, which can total ~ Editor ~ In its recent King v. Burwell ruling, the hundreds or thousands of dollars every Eula M. Hoover, Executive Assistant Supreme Court decided that the IRS can month. ~ Editorial Reviewers ~ offer subsidies to 6.4 million Americans who Worse, many insurance plans don’t offer Virginia T. Ladd, AARDA President/Executive Director Patricia C. Barber, Assistant Director bought health care insurance plans through any cheap treatment alternatives to enrollees. Sharon L. Harris, Project Manager federal ACA exchanges. Had the justices ruled More than half of silver plans apply the ~ Contributor ~ that the subsidies were illegal, many of these highest level of cost-sharing to every multiple Deb Patrick, Special Events/Walk Coordinator ~ Distribution Coordinator ~ Americans would have been unable to pay sclerosis agent, setting patients up for huge Cathleen Cruchon, Accounting/Database their monthly insurance premiums. out-of-pocket expenses. Six to ten plans put Opinions expressed in this newsletter do not necessarily reflect the every antiangiogenic--a type of cancer drug-- views of the American Autoimmune Related Diseases Association, But even with federal subsidies, many its Board of Directors, or its Scientific Advisory Board. Information Americans can’t afford health care under in the highest cost-sharing level. is intended for general interest only, not for medical diagnosis or the ACA. Insurers still are pricing lifesaving Essentially, many Americans are signing advice. Please request permission before reproducing, in whole or in part, material contained in this newsletter. Contact the Editor at medications out of reach for thousands of up for ACA insurance plans thinking they’re [email protected] or 586-776-3900. patients. The law is failing those who need covered, only to find out they can’t afford ~ AARDA Officers and Board Members ~ coverage the most. Congress and President basic treatment. ACA enrollees are 59 percent Chairman of the Board – Herbert G. Ford, D.Min. Obama must work together to fix shortcomings more likely to need specialty medications President, NECABA Management Group, Inc., Detroit, Michigan Pastor, Good Shepherd Missionary Baptist Church, Southfield, Michigan in the ACA and guarantee truly affordable care than people who buy insurance outside the Vice Chairman of the Board – Stanley M. Finger, Ph.D. for all Americans. exchanges. Excessive out-of-pocket costs President, Environmental Consulting and Investigations, ACA plans offer four levels of insurance could prevent patients from filling their Bluffton, South Carolina President – Virginia T. Ladd coverage: platinum, gold, silver and bronze. prescriptions or could force them to take pills Executive Director, Autoimmune Diseases Association, Platinum and gold plans feature more less frequently to stretch out a limited supply. Clinton Township, Michigan expensive premiums but cover a higher When patients can’t afford to follow their Treasurer – John Kaiser, CPA Director, Assurance Services, McGladrey & Pullen, LLP, percentage of the cost of prescriptions, doctor prescribed course of treatment, they become Chicago, Illinois services and other health care. Bronze and sicker and rack up higher health care bills due Secretary – Michelle Ouellet silver plans--the most popular type--offer to disease complications and hospitalizations. CACI International, Vienna, Virginia cheaper premiums but force enrollees to pay Failing to take medications as directed-- ~ Board of Directors ~ Nona Bear higher out-of-pocket costs. Patients with whether due to affordability concerns or other Health Care Consultant, Falls Church, Virginia silver plans often have to pay $2,000 or more factors--costs patients and the U.S. health care Althea Cices out-of-pocket as a “deductible” before their system up to $300 billion every year. Registered Dietitian, Monsey, New York Richard M. Hodge insurer helps pay for prescription drugs. For Making prescriptions more accessible Senior Director for Congressional Affairs those with bronze plans, deductibles average would prevent many of these complications. Healthcare Information and Management Systems Society more than $4,000. To do that, federal officials should reform Fairfax Station, Virginia Julia Pandl Even after enrollees hit their deductible, the ACA exchanges to prevent insurance Author and Humorist, Bayside, Wisconsin the out-of-pocket burden can be staggering. companies from applying the highest level of Linda Pesonen For instance, one third of silver plans require cost-sharing to every medicine in a particular Marketing Consultant, Linda Pesonen Consulting, Inc. Plymouth, MI “co-insurance” of 30 percent or more for all class of drugs. They should also lower Robert H. Phillips, Ph.D. multiple sclerosis drugs. That means MS patients’ out-of-pocket costs by prohibiting Director, Center for Coping, Long Island, New York patients with those plans are on the hook for co-insurance for low-income enrollees. J. Michael Quinlan, LL.M Attorney & Corporate Executive, McLean, Virginia at least 30 percent of the total cost of their The Supreme Court preserved the ACA. Lawrence Damian Tobias prescriptions--no matter how expensive. Now it’s up to federal regulators, Congress and Founder and President, PharmaNexus, Inc. More than a third of silver plans require President Obama to improve it and ensure Montville, New Jersey similarly high co-insurance payments for two that the law provides Americans with truly ~ Advisors to the Board (Nonvoting) ~ common classes of cancer drugs. affordable health care coverage. Aaron Abend AARDA Informatics Director High co-insurance arrangements deny Guilford, Massachusetts Edward K. Christian President/CEO ~ Saga Communications, Inc., Grosse Pointe Farms, Michigan Howard E. Hagon Quote to ponder and enjoy... Owner (Retired), Contour Fabricators, Swartz Creek, Michigan, and Ellenton, Florida A heart that loves is always young. Stephanie P. Hales Associate, Sidley Austin LLP, Washington, DC – Greek proverb Robert Meyer, CPA President, Fort Wayne Insurance Services, Inc. , Fort Wayne, Indiana 2 AARDA and NCAPG represented at WHO meeting - from a report prepared by Richard Hodge, Member, AARDA Board of Directors The United Nations World Health Organization Representatives of the WHO Secretariat and INN BQ Expert Group (WHO) held a meeting on International explained in detail the reason for and history of the proposed INN BQ, Nonproprietary Names (INN) Biological Qualifi ers and the status of the proposal. In accordance with the current WHO (BQ) at its Geneva, Switzerland, headquarters, on proposal, the assignment of an INN BQ to a “biological active substance” June 16, 2015, to continue its development of a would be done by the WHO upon application and the BQ would not have worldwide accepted naming convention for biologic any impact on the INN itself or be a part of the INN itself but a suffi x. BQs, and biosimilar drugs. Representing the American as currently proposed, would apply to all biologics, not just biosimilars. Autoimmune Related Diseases Association (AARDA) and the National The current Expert Group proposal is to include after the biosimilar’s Coalition of Autoimmune Patient Groups (NCAPG) was AARDA Board name a four-digit alpha code (with no vowels or numbers) indicating member Richard Hodge. Other healthcare organizations, provider the BQ applicant and site of manufacture. Also being considered is a groups, the media, and various regional and national organizations also fi fth digit verifi cation digit. BQs could include manufacturer, chemical had representatives in attendance at the meeting. variants, trade names, etc. BQ could track variations in amino acid The purpose of the WHO meeting was to explain the INN BQ sequence. The BQ once assigned would remain the same for the life of Expert Group proposal process and the proposal development thus the product. The BQ applicant would be the same worldwide. far, to discuss the latest round of comments received, and to explain WHO itself has no regulatory authority in the individual countries the rationale for the current proposal. The meeting was attended by to enforce the fi nal INN BQ proposal. National compliance with approximately 45 in person and many more on the WebEx. The BQ the fi nal proposal will be voluntary based on decisions of the many Expert Group has published a new Biological Qualifi er Proposal draft national regulatory agencies around the world to embrace the fi nal based on the numerous comments received. WHO proposal. At this point, the national regulatory agencies have not AARDA had submitted comments to the WHO INN BQ Expert committed to using the BQs, but it is anticipated that they will when the Group earlier in the year emphasizing major patient safety concerns that fi nal proposal is released. endanger AD patients “given the complexity of biologic medicines, their The WHO INN BQ Expert Group is being extremely collaborative potential for causing serious adverse reactions and the long-term potential and inclusive to ensure optimal acceptance and adoption of the fi nal consequences for patients.” AARDA’s comments continued, “Biologics are proposal by as many national regulatory agencies around the world not identical to one another, and shared non-proprietary names create the as possible. The universal adoption of the BQ for all biologics and potential for ambiguity that could lead to inadvertent and inappropriate biosimilars is essential to protection of patients around the world. substitutions.” AARDA concluded addressing biosimilar pharmaceuticals, The next step is for the WHO BQ Expert Group to publish yet another “Distinguishable product identifi cation is essential.” draft proposal incorporating the latest round of comments and proposals The new generation of biologic pharmaceuticals and biosimilars and to hold additional discussions most likely in October 2015. The National now coming to market offer autoimmune disease patients the best Coalition of Autoimmune Patient Groups and AARDA will continue carefully hope yet. Biologics are complicated drugs developed from living tissue. monitoring the developing proposal on behalf of all AD patients. Biologics are comprised of complex molecules that are very complicated In March 2015, the NCAPG sponsored a congressional briefi ng on to replicate and diffi cult to compare. The characteristics of biologics and biosimilars. The National Coalition of Autoimmune Patient Groups has biosimilars, similar to generic versions of simpler inorganic compounds, the mission to consolidate the voice of autoimmune disease patients and are highly dependent upon the manufacturing process in addition to to promote increased education, awareness, and research into all aspects the ingredients. Because of the complexity and the importance of the of autoimmune diseases through a collaborative approach. NCAPG is manufacturing process, it’s critically important to be able to identify and supported and facilitated by AARDA and is composed of 38 autoimmune track the manufacturer and the manufacturing site of biosimilars. disease patient groups.

A book worth reading: The Lupus Encyclopedia Lupus patients and facts, advice, and encouragement. reproductive, etc. He gives information their caregivers may In straightforward, easy-to-read about complications and their treatments, want to clear 2-inch writing, the author starts with “Defi nitions, medications and other treatments, and spaces on their book Causes, and Diagnosis of Autoimmune “Practical Matters”--talking with your shelves to make Disease”; discusses “What Causes Lupus?” doctor, deciphering symptoms, dealing room for The Lupus and describes “The Meaning of All Those Test with health insurance, and affording health Encyclopedia, written Results.” care. Dr. Thomas shares “The Lupus Secrets by Donald E. Thomas, The author proceeds with information Checklist.” Included is a comprehensive list Jr., M.D., and subtitled about the effect that lupus has on the of “Patient Resources.” “A Comprehensive Guide for Patients and body and explains the various systems Dr. Thomas presents information Families.” The 874 pages are packed with involved--nerves, urinary, musculoskeletal, Article continued on page 7

3 Capping prescription drug prices: A good idea?

ge ______Name ______A --The following article is adapted from a July 25, 2015, Detroit News editorial written by ate ______Address ______D AARDA President/Executive Director Virginia T. Ladd.

Health care costs keep climbing. According from rare diseases. Last year, 17 of the 41 Refill _____ Times ______to the consultants at PricewaterhouseCoopers, new medicines approved by the FDA were PLEASE LABEL medical spending will increase 6.8 percent this treatments for rare diseases affecting fewer year and another 6.5 percent in 2016. What’s than 200,000 people. In effect, price controls happening? leading to research funding cuts tell Americans Lawmakers also should instruct Some policy makers are blaming high with rare diseases, “You’re not worth helping.” regulators to strike the right balance between prescription drug prices for these cost increases Although high costs on specialty drugs encouraging original drug development and, in Massachusetts, for example, are pushing seem problematic, such drugs account for only and enabling generic alternatives to come to a bill that could cap prices on certain innovative 3 percent of total U.S. health care spending; market. While generic competition helps keep but expensive medications. At a quick glance, and oftentimes these specialty drugs lower total drug spending in check, it is a fact that that does seem one reasonable way of reducing health care spending by averting the need without huge research efforts to develop the medical expenses. However, establishing caps for more expensive treatments. For example, original brand name drug, there would be no will discourage investment in drug research, Sovaldi, an $84,000 hepatitis C medication, generic alternative. thus robbing patients of new, life-changing cures 90 percent of patients. Patients treated Medication costs need to be reduced medicines. Drug development is a stunningly with Sovaldi enjoy restored liver function wherever possible, keeping in mind that expensive process. According to a study from with improved quality of life and are spared imposing price controls on prescription drugs Tufts University, the average FDA-approved more extreme hepatitis C treatments, such as will deter medical research and development medicine requires an investment of $2.6 billion $500,000 liver transplants. but also that many patients themselves are and more than a decade of research. What can lawmakers do? They should cutting down on their medications or simply The National Bureau of Economic make drugs more affordable by, e.g., prohibiting ignoring their prescriptions altogether because Research estimates that mandating drug price insurers from charging unaffordable co- of prohibitive costs. decreases of 40 or 50 percent would lead to a 30 pays and co-insurance. They could push for Yes, reducing medication costs is a to 50 percent decrease in early stage research stronger trade agreements that stop other balancing act--one that needs to be juggled and development projects. Research funding nations from capping their own drug prices carefully and wisely. Can patients, health care cuts resulting from price controls would hurt and freeloading off U.S. drug developments at providers, and lawmakers work together on all patients, but especially those suffering the expense of U.S. patients. this to the benefit of all concerned? Lyme disease--an autoimmune connection? What does Borrelia burgdorferi have to do with Lyme disease? they simply survive antibiotic exposure through some other means. It’s the bacteria that causes the disease, and it may be more Dr. Embers says, “It’s possible that at some point persistent than previously thought. And what does it have to during infection or in response to antibiotics, B. burgdorferi do with autoimmunity? morphs such that it can no longer be cultured in vitro, forcing For the majority of patients with Lyme disease, the symptoms scientists to depend on genetic evidence of its presence.” fade as the infection is cleared following a course of antibiotics. Immunologist Dr. Nicole Baumgarth, of the University of However, for a small subset of the population, the symptoms of California Davis, suggests that post-treatment Lyme disease may Lyme disease--fever, fatigue, body aches, headaches--can persist for result from an ongoing infection, remnants of uncleared bacteria, or an months or even years, even when diagnostic tests suggest that Borrelia autoimmune process. burgdorferi has been wiped out. A problem is that unlike bacteria in Epidemiologist Eugene Shapiro, of Yale Medical School, notes that urinary tract infections, for example, Borrelia can be elusive. antibiotic refractory arthritis, a medically accepted diagnosis, likewise Dr. Monica Embers, a microbiologist at Tulane University in New may result from an ongoing autoimmune disease or slow clearance of Orleans, says, “With Borrelia, you can’t find them and prove that they’re antigen that fuels persistent inflammation in Lyme disease patients. st i l l t he re .” Dr. Baumgarth points out that all of these explanations involve Papers published by Dr. Embers and colleague Dr. Kim Lewis, a some immune disturbance. biochemist at Northeastern University, Boston, could help explain how Dr. Lewis says that he plans to search for B. burgdorferi persisters in some B. burgdorferi might survive antibiotic treatment. Their in vitro a mouse model to determine whether they can be eradicated in vivo by studies demonstrated that while certain drugs kill most B. burgdorferi, delivering antibiotics in pulses. His group has found in vitro evidence they leave behind a population of persisters--bacteria that are genetically to suggest that persisters “wake up” and can become susceptible to identical to their kin but become dormant or so slow-growing that they antibiotics again when the drugs are washed away. He suggests, “That, aren’t killed by microbiostatic antibiotics. in principle, should be possible to emulate in people.” Dr. Lewis notes that persisters differ from antibiotic-resistant bacteria --Source: Excerpted from “The Search for Persisters,” Amanda B. Keener, in that they don’t have special adaptations that make antibiotics ineffective; The Scientist Magazine, August 11, 2015

4 Creativity and energy benefit AARDA What’s awareness, education, and funds rolled into one? A grassroots s Yogibo “Ultimate Bean Bags” shops, New York and online, for their fund raiser, of course! And AARDA has benefited greatly from quite a choose-a-charity day, raised $150 for AARDA. variety of grassroots projects during the past months. In addition to s The May Pittsburgh Marathon gave AARDA friend Dana Magnelli events mentioned in previous InFocus editions, we have some new ones a chance to earn $1,434 for AARDA’s mission. to report. s Lilly Stairs and her friends in the Boston area continue to find s The traditional coupon book project, this one from Lord & Taylor, imaginative ways to turn their “50 Cents for 50 Million “ talents into brought $555. successful AARDA fundraising (comedy show, pajama challenge, t-shirts s The annual Pittsburgh area gala in memory of Cara Lian Lebedda and jewelry sales, etc., etc.), total profits still mounting ($11,272.92, as of realized a profit of $2,155. 8/18). s The Oxford, Ohio, Autoimmune Bicycle Race Across America still s AARDA friend Jacqueline Inmers’ first annual Stoop Sale (as has pledges being paid ($5,665 as of 8/18). opposed to a garage sale--who knew!) brought $242. s Board member Julie Pandl’s Howl at the Moon party, with its So...dear readers, feel free to jump right into your own grassroots challenging 1K walk, brought $16,540 to AARDA. project. Some big, some small, but all having possibilities. Special Events/ s Jeans continue to be popular as evidenced by the $80 raised in Walk Coordinator Deb Patrick would love to hear from you (dpatrick@ one day at the law office of Gross & Welch, in New York aarda.org; 586-776-3900).

Autoimmune Walk campaign continues coast to coast

“Linking Together for a Cure” for 2015 sees AARDA friends rescheduling for storms (DC area) but looking for good weather (Tri-State, NY; and CA). Cheering on all the Walk teams is National Autoimmune Walk Ambassador and National AARDA Spokesperson Kellie Martin. l DC Area - Two rescheduled dates because of storms (to August 1) brought challenges but no lack of enthusiasm as Board member Michelle Ouellet and team led the way to a successful Walk at McLean Central Park, in McLean, Virginia. More than $7,500 was raised for AARDA. CHEERS and a big THANK YOU to Michelle, team captains, donors, and walkers! l Tri-State (NY, NJ, CT) - Momentum is building for the Tri- State Autoimmune Walk (Sunday, September 20). Walkers will gather at Hudson River Park’s Clinton Cove, Pier 97, at 10:00 a.m., for “Linking Together for a Cure.” This year’s Tri-State teams are so energized and committed to raising awareness and research funding that they have surpassed their original goal of $10,000 and have reset it to $20,000! Visit www. autoimmunewalk.org and click on Tri-State Walk to learn more and lend your support. l CA - The Inaugural Los Angeles Walk (Sunday, November 8) will be a one- mile walk along Constitution Boulevard. Leading this effort is actress Haley Ramm (“Chasing Life,” ABC Family Channel) who joins our ranks as our first Los Angeles Autoimmune Walk Ambassador. Haley, her family, and many of their celebrated friends, setting an impressive goal of $100,000, already are off to an amazing start with $12,000 in sponsorships! This Los Angeles Walk will feature a Red Carpet (of course!), celebrity team captains and walkers, exciting entertainment, and activities for children. Registration begins at 1:00 p.m., and the Walk-Off is at 2:00 p.m. Visit www.autoimmunewalk.org to get details and/or support the L.A. Walk.

To our readers: Autoimmune diseases are conditions in which the body’s own immune system can (among other things) cause damage to the skin, joints, and internal organs. Although most autoimmune diseases are not yet preventable or curable, most can be controlled to varying degrees. It is because of the wide variance and severity that the individualization of medical management is so important. It is vital that persons diagnosed with (or suspected of having) an autoimmune disease consult with their physician or with the appropriate division at a major teaching hospital to assure proper evaluation, treatment, and interpretation of information contained in this newsletter. Opinions expressed in this newsletter do not necesarily reflect the views of the American Autoimmune Related Diseases Association or its Scientific Advisory Board. If you belong to a Service Organization or Fraternal (or other) group which provides financial contributions to charitable organizations, please ask them to consider the AARDA as a potential recipient. Your thoughtfulness could provide a vital link in helping our efforts to promote autoimmune research, education and awareness. (The AARDA is a fully accredited IRS 501 (c) (3) tax exempt organization.)

5 A book worth reading: The Marvelous Transformation Promising vaccine to

Come, take a walk through Scattered throughout the reverse type 1 diabetes the life of a woman who has book are the author’s “Wonderful heads to a next level trial experienced autoimmune disease Pieces of Divinity I Have Found.” for more than 20 years. Share She says, “Successes, even if A promising her warmth, pain, joy, depression, short-lived or intermittent, vaccine with the hope, and--yes--transformation. are still successes; strive to potential to reverse Author Emily Filmore states, “It is accomplish them.” And, “There the symptoms of about being willing to be open and is no such thing as ‘fair’; take a type 1 diabetes, honest with yourself when you fall deep breath.” What else to do? commonly known into old patterns and repeatedly “Counting your blessings will as juvenile diabetes, inviting yourself to emerge help you overcome that sense of is heading to a phase stronger, without fear, and without hesitation. unfairness.” II trial. This will test the vaccine on humans It is about forgiving yourself for being ill.... Through her book, the author invites with this chronic autoimmune disease. Lead It is about making a conscious choice to live the reader to “look at this experience that researcher Denise Faustman, M.D., Ph.D., every day that you are alive and not let the you are having and explore ways to heal it Director of Immunology, Harvard Medical disease control you.” --not necessarily the disease itself but the School, and Director, Immunobiology, The author shares not only her extreme difficulties you may be having related to it.” Massachusetts General Hospital, says, “The ups and downs, including the long struggle to The Appendix includes helpful phase II human clinical trial is an important find a diagnosis, but also her victories in finding information on products, services, and step in advancing a safe, affordable, and the right medical treatment, complementary/ support groups while the bibliography and accessible therapy that will reverse this alternative aids, e.g., acupuncture and yoga, suggested readings present a wide range of autoimmune condition in people at all stages and even cosmetics to help on those not-so- authors and topics. of the disease.” pretty days. She shares caregiver tips and --The Marvelous Transformation, Emily A. The vaccine, bacillus Calmette-Guérin suggests how to work with a doctor and when Filmore, BA, JD, Central Recovery Press, Las (BCG), already an FDA-approved vaccine it’s time to move on. Vegas, NV, 210 pp., soft cover $15.95 for tuberculosis and bladder cancer, has succeeded in reversing type 1 diabetes in a trial among mice and in a phase I trial in 103 It’s “Linked Fore a Cure” time in Chicago. Join the fun! humans. The new, recently announced, trial John Kaiser, AARDA Treasurer and avid golfer, is announcing the third annual “Linked Fore will last for five years and will test the effect a Cure” Golf Outing, a benefit for AARDA. This year’s event is set for Monday, September 21, at of the vaccine on people with type 1 diabetes the Schaumburg Golf Club, Schaumburg, IL (www.schaumburggolf.com). Golf begins at noon, among adults between ages 18 to 60. The with registration at 11:00 a.m. vaccine may be able to improve the disease in The day on the links begins as a 4-person scramble, lunch included. The event will be people who have small but detectable levels followed by cocktails and hors d’oeuvres plus a silent auction, raffle, and awards ceremony. of insulin coming from their pancreas. Dr. The cost through August 21: individuals, $200; twosomes, $400; foursomes, $800. Costs Faustman estimates that about one million after that date: individuals, $250; foursomes, $1,000. Corporate sponsorship opportunities are people with type 1 diabetes still produce available. some insulin. To find more information or to register, go to www.linkedforeacure.com; or the following: Researchers have shown that BCG can phone, 309-648-9261, fax, 586-776-3903; e-mail, [email protected]. eliminate problematic white blood cells that lead to type 1 diabetes by destroying the beta cells that make and release insulin into the blood. Previously, the study authors showed Rituxan enters phase III clinical trial that they were able to eliminate temporarily the abnormal white blood cells and provide Rituxan, a biologic treatment currently being used for certain autoimmune diseases a small return of insulin. The new trial will (rheumatoid arthritis, granulomatosis with polyangiitis, and miscroscopic polyangiitis) is now provide more frequent doses of the vaccine entering a phase III clinical trial to investigate its use for pemphigus vulgaris. The aim of the over a five-year period in 150 adults with study, called PEMPHIX, is to determine the efficacy and safety of Rituxan for the treatment of the disease. The researchers hope that the pemphigus vulgaris. vaccine will produce improved blood sugar A rare, chronic, and potentially fatal, blistering skin disease, pemphigus vulgaris affects control and could be used to treat advanced women and men equally, unlike many other autoimmune diseases, and occurs primarily in disease. adults ages 30-60. It has a mortality rate between 5 and 10 percent, mostly due to complications Dr. Faustman says, “Type 1 diabetics are of therapy. a pretty skeptical audience. There’s been a --Source: Genentech, via Katie Zied, Centron Public Relations, New York, August 24, 2015 Article continued on page 10

6 What do rheumatoid arthritis patients have to say? P. Buckley Moss print A new national survey of rheumatoid The good news is that new treatments for keeping or gifting arthritis patients conducted by the Health offer hope for improved quality of life. About Union and RheumatoidArthritis.net found a half of the survey respondents reported severe impact on quality of life, employment, satisfaction with their treatments, and only 21 and ability to afford treatment. This percent were dissatisfi ed. Those on biologics, autoimmune disease that results in joint a newer type of medication, have slightly infl ammation, pain, stiffness, and swelling, higher satisfaction. Of those respondents plus possible harm to other organs, affects who have had their rheumatoid arthritis go approximately 1.3 million Americans. into remission, 74 percent report remission “Many people do not know rheumatoid occurring after treatment with medication. Widely recognized artist E. Buckley arthritis is a progressive autoimmune disease Unfortunately, 38 percent of respondents have Moss has created a delightful image of and not the result of aging and wear on the avoided medications because of cost. autoimmune patients and their friends body, like osteoarthritis, the most common Manufacturer-sponsored fi nancial “Linking Together for a Cure.” The array form of arthritis,” said Andrew Lumpe, Ph.D., a assistance programs for medication are of soft colors manage to be both soothing patient with rheumatoid arthritis. “Treatment available although only 41 percent indicated and vibrant while sending a meaningful can help slow the damage, but rheumatoid participation. The primary reason for non- message--our own story of joy, dedication, arthritis frequently alters the lives of both participation was lack of awareness. and fellowship. Each reproduction, giclée patients and their families.” The “RA in America” survey was on paper, has the look and feel of a highly The top life-altering symptoms reported conducted online in the fall of 2014 with 3,561 prized original. by the respondents were fatigue (92 percent), respondents who had been diagnosed with A portion of the proceeds from the pain (84 percent), and physical limitations (50 rheumatoid arthritis and were residents of the sale of the print will benefi t the American percent). These were also the top three reasons U.S. or U.S. citizens living abroad. Autoimmune Related Diseases Association used for individuals with rheumatoid arthritis --Source: “New national study fi nds (AARDA). To view “Linking Together for a in cutting back on work hours or having to autoimmune disease severely impacts patients,” Cure” in full color, go to www.aarda.org. stop work altogether. Health Union, LLC, May 26, 2015 The 10” x 10” reproductions, in limited ediion, are available from the artist for $85 each plus $9 shipping (must Upcoming Education Events for 2015 mention AARDA). To place orders: e-mail, Sponsored, cosponsored, or supported by AARDA [email protected]; phone, 804- 725-7378; mail, P. Buckley Moss Galleries, October 8 - Capitol Hill Congressional Briefi ng, “Step Therapy and Related Patient Ltd., Attn: Patty, 74 Poplar Grove Lane, Concerns” - Washington, DC Mathews, VA 23109. Nov 20-21 - Scientifi c colloquium - “Neuropsychiatric Manifestations of Autoimmune Disease” - Offi ces of Sidley Austin, Washington, DC A book worth reading continued from page 3 on preparing for a successful pregnancy, breastfeeding, and planning contraception. He quotes Michelle Petri, M.D., Co-Director Save the date and celebrate: It’s Derby Time! of the Hopkins Lupus Pregnancy Center: “For most women with lupus, a successful With a new venue and a veteran planning team eager pregnancy is possible.... For nearly all to go, AARDA’s annual fund raiser, the Derby Luncheon and mothers, a happy outcome is possible.” Silent Auction, is being groomed for another win. Scheduled Webster’s dictionary includes “general for Derby Day, Saturday, May 7, 2016, (which coincidentally is education course” in the defi nition of the day before Mother’s Day), this gala event is set to take place “encyclopaedia.” This strikes the reviewer at the beautiful Mac Ray Harbor Restaurant, on Lake St. Clair, as being a good description of this volume in Harrison Township, Michigan. that will appeal to not only lupus patients Always featuring tempting bidding items in the silent but also interested others who will benefi t by auction and raffl e, touching stories, great entertainment, the detailed information presented on lupus and fabulous food, this year’s event will be special because plus some other diseases. it will take its place as part of AARDA’s Silver Anniversary --The Lupus Encyclopedia, Donald E. Celebration. That’s right--AARDA, founded in 1991, will mark Thomas, Jr., M.D., FACP, FACR, Johns Hopkins its 25th anniversary in 2016. University Press, Baltimore, MD, 874 pp, soft If you think you may not be on the invitation list, call the AARDA offi ce at 586-776-3900 or cover $34.95, hard cover $69.95, ebook $34.95 e-mail [email protected].

7 ~ R e s e a r c h ~ New mechanism may explain autoimmune uveitis One major cause of human blindness The eye is one of the places in the body the T cells in the gut produced a is autoimmune uveitis, an inflammatory eye that has immune privilege, meaning that it protein shown in previous studies disorder that occurs when a person’s immune is protected by a blood-tissue barrier that by Dr. Caspi’s team to augment the system goes awry, attacking proteins in the physically separates it from the rest of the body damage in autoimmune uveitis. eye. Women tend to be at greater risk than and, thus, minimizes the exchange of substances The researchers theorize that bacteria men of developing chronic forms of uveitis; and blood-borne cells going in and out of the in the gut produce a molecule that, to T cells, and African-Americans, too, have a higher eye. In the case of autoimmune uveitis, immune looks similar to a protein in the retina. This risk than others. cells (T cells) are thought to penetrate this gives the T cells orders to look for that retinal What causes uveitis? A recently released blood-ocular barrier. First, however, they must protein and attack it. report from the National Institutes of Health (NIH) become activated, which occurs when they “Given the huge variety of bacteria in our suggests that bacteria in the gut may provide a come in contract with the protein that they are intestines,” says Dr. Caspi, “if they can mimic a kind of training ground for immune cells to attack pre-programmed to recognize. retinal protein, it is conceivable that they could the eye and that evidence increasingly suggests an Herein lies a paradox that’s been also mimic other self-proteins in the body. So association between the microbiota in the gut-- puzzling uveitis researchers--the proteins we believe that normally harmless bacteria in bacteria, fungi, and viruses--and the development believed to be targeted in autoimmune uveitis the gut could be involved in promoting other of autoimmune disorders. are sequestered in the eye; they don’t exist autoimmune diseases as well.” Rachel R. Caspi, Ph.D., a senior elsewhere in the body. So what activates the Dr. Caspi comments that while the investigator at the NIH National Eye Institute T cells and allows them to cross the blood- results don’t have immediate implications (NEI) whose lab led the study, says that ocular barrier? for patients, they will help inform further findings from the study suggest how the Studying mice, the researchers searching researchers to understand the disease and association between the gut and autoimmune their bodies for activated T cells made an help to develop new therapies. disorders may be made; and therefore it interesting discovery. Levels of activated T --Source: Excerpted from “In uveitis, bacteria in may have implications about the origins of cells were not elevated in the lymph nodes, gut may instruct immune cells to attack the eye,” autoimmune disease not only in the eye but the glands that tend to swell during infections; National Institutes of Health, National Eye Institute, also elsewhere in the body. but they were abundant in the intestines. Also, August 18, 2015

Serendipity and MS--When is a lab error a plus? Researchers in a laboratory at Northwestern University had a little produced a protein that could have protected them from the disease in mix-up with male and female mice that shed new light on the reason a way that interfered with the inflammatory immune response. that women are more likely than men to develop some autoimmune Dr. Brown says that the researchers are now approaching research diseases such as multiple sclerosis (MS). from the opposite way. Instead of asking, “Why is multiple sclerosis The researchers accidentally used all female mice instead of all more common in women?” they are asking, “Why are males protected male mice in an experiment which led to the discovery that the innate from the disease?” She says, “Understanding the mechanisms that lymphoid cell, a type of white blood cell, exhibits different immune limit disease in men can provide information that could be used in activities in males versus females. When a mouse model of MS is future therapy to block disease progression in women.” Dr. Brown induced into the animals, essentially 100 percent of the mice become adds, “The hope is to target these cells in a sex specific way and provide ill if they are female. A notable difference the researchers have found is a therapy with fewer side effects.” that male mice either do not get sick or experience lesser symptoms. Abigail Russi, a Feinberg M.D., Ph.D., student working in the In the original study, it was planned that two groups of female Northwestern lab, commented, “We are now looking at what activates mice were going to be observed. The first group was normal while these cells preferentially in males and not in females. The next the other group had a genetic mutation in a growth factor receptor question is, Can we activate the innate lymphoid cells in females to called c-Kit which prevented the development of specific cells. In prior decrease disease susceptibility?” experiments similar to this study, the female mice with the mutation In the 1990s, scientists found that testosterone was a protective did not get as sick as the normal mice. In this study, however, instead hormone for women with MS, but long-term treatment of women with of using female mice, male mice were used mistakenly--and the male testosterone is not a viable option in female MS because of undesirable mice with the mutation got very, very sick! side effects. Lead author Melissa Brown, Ph.D., commented, “Because this Dr. Brown says, “This early research may have implications for strain of male mice never get very sick, I thought there was some sort of understanding other diseases such as lupus and rheumatoid arthritis, mistake.” Therefore, the student was directed to repeat the experiment; which also show a female bias.” and the results were duplicated. The mice with the c-Kit mutation lacked type 2 innate lymphoid --Source: “Did Researchers Finally Discover Why Multiple Sclerosis Is More cells, typically present in bone marrow, lymph nodes, and thymuses of Common in Women?” Rachel Lutz, HCP Live; “Protecting Women from both males and females. The researchers hypothesized that male mice Multiple Sclerosis,” Erin Spain, Northwestern University, May 28, 2015

8 ~ R e s e a r c h ~ Just breathe...well, New discovery overturns textbooks teaching let’s think about it

Researchers at the University of Virginia nervous system, and it was very clear from Whether we have weakened immune School of Medicine have determined that the that first singular observation--and they’ve systems, autoimmune diseases, or plain good brain is directly connected to the immune done many studies since then to bolster the health, we are encouraged to take deep breaths, system by vessels previously thought not to finding--that it will fundamentally change enjoy the fresh air, and keep that good oxygen exist. The true significance of the discovery the way people look at the central nervous working within our bodies. What happens lies in the effects it could have on the study system’s relationship with the immune when the beneficial effects of the air we breathe and treatment of neurological diseases syste m .” is compromised? ranging from autism to multiple sclerosis. As to how the brain’s lymphatic vessels This was demonstrated in a recent study Dr. Jonathan Kipnis, Director of the managed to escape notice all this time, Dr. in Shanghai, China, a city with severe air University of Virginia’s Center for Brain Kipnis said that they were “very well hidden”; pollution both outdoor and indoor. The results Immunology and Glia, commented, “It and he noted that they follow major blood showed that filtering fine-particle pollutants changes entirely the way we perceive the vessels down into the sinuses, an area difficult out of indoor air for just two days improved neuro-immune interaction. We always to image. He said that the unexpected presence markers of cardiorespiratory health in study perceived it before as something esoteric of the lymphatic vessels raises a “tremendous volunteers. The authors also noted significant that can’t be studied. But now we can ask number of questions” that now need answers, reductions in blood pressure and inflammatory mechanistic questions.” both about the workings of the brain and the biomarkers as well as nonsignificant increases The stunning discovery led Dr. Kevin array of diseases that plague it. in lung function. Lee, Chair of the Department of Neuroscience --Source: Excerpted from “Researchers Find The study involved 35 healthy, non- at the University, to declare, “They’ll have to Textbook-Altering Link Between Brain, smoking college students living in ten change the textbooks.” He said, “There has Immune System,” Josh Barney, UVA Today, dormitory rooms in the city. The rooms were never been a lymphatic system for the central June 1, 2015 randomized so that half received a functioning air purifier and the other half a sham purifier. Each unit was placed in the center of the dorm room and ran for 48 hours. Study volunteers Uveitis, psoriasis, psoriatic arthritis-- stayed in their rooms with the doors and yes, a connection windows closed during this time. The researchers evaluated health endpoints Researchers at the University of with severe psoriasis, and a 150 percent and drew blood for analysis after the 48-hour Copenhagen in Denmark have identified a elevation among those with psoriatic arthritis. period. After a two-week washout period, bidirectional association between psoriatic When the researchers analyzed the the process was repeated with the sham and disease and uveitis. This study is the first to database from the view of patients with uveitis, functioning air purifier units reversed. Then examine this relationship between these three the adjusted model also showed a relative the blood was analyzed for 14 biomarkers for autoimmune diseases--uveitis, psoriasis, and increased risk for psoriasis. Individuals with inflammation, coagulation, and vasoconstriction. psoriatic arthritis. The database included uveitis had a 59 percent risk for mild psoriasis, All circulating biomarkers decreased in response 74,129 Danish patients with psoriasis and a greater than twofold increase in risk for to the air purification intervention although 13,114 cases of uveitis. The study included severe psoriasis, and a nearly fourfold increase decreases were statistically significant only for patients who were older than 18 years. for psoriatic arthritis. a marker of blood coagulation and for three Psoriasis is a common, chronic disease The researchers suggest that patients inflammation markers. of the skin. In about 5 percent of the patients, with prior or current uveitis should be Writing in the Journal of the American arthritis (psoriatic arthritis) will develop. evaluated closely for skin and joint symptoms, College of Cardiology, the researchers said, Uveitis is swelling and irritation of the uvea, and patients with psoriasis and psoriatic “To the best of our knowledge, this is the first the middle layer of the eye. The uvea provides arthritis should be evaluated closely for eye study to examine the impact of short-term most of the blood supply to the retina. symptoms. purification of indoor air on clinical and After adjusting for age, sex, socioeconomic biochemistry measures of cardiorespiratory status, and comorbidities (resulting from --Source: “Patients With Psoriasis Should health in areas with severe air pollution.” diseases), there was a 38 percent increased Be Examined for Uveitis,” Lara C. Pullen, --Sources: Excerpted from “Air Purifiers Help risk of uveitis among individuals with mild Ph.D., JAMA Dermatology, July 30, 2015, via Lungs and Heart,” Jeff Minerd, MedPage Today, psoriasis, a 40 percent increase among those Medscape Medical News June 17, 2015

~ E D I T O R ’ S N O T E ~ The information on these pages is provided without implied recommendation, solely as a service to those who may be interested. As with all research projects, interested parties should thoroughly question and have a complete understanding before considering participation.

9 AARDA says “thank you ” to . . . With Special Thoughts... Founding Donors (Patrons) ($5,000 or more) Tributes Anonymous • Gerald and Virginia Ladd • Partnership to Fight Chronic Disease • PhRMA • Henry Riordan Irving Goldblum - In his honor for Father’s Day – Lynn Sponsors ($1,000 to $4,999) Greenberg AbbVie, Inc. • Louis & Helen Fanaroff Foundation Ltd. • Sibella Pedder • Bradford Yoho Family Billie Johnson - In honor of her birthday – Judy Udove Brenda Luterbach – In her honor - AbbVie Supporting Donors ($250.00 to $999.00) Alan Mehl – In honor of his completion of Race Across America – Ellen Hipsky • Anne Remington • Valrie Thomas Bob & Laura Scheffler Contributors ($50.00 to $249.00) Yvonne Quail - In celebration of her birthday Marilyn & Allan Bandel Peggy Dervitz Jan Hewlett Marty & Paul Murray Joseph & Rebecca Taylor Annelise Sprau – In her honor - Mark Barron Kelly Birkenhauer Barbara DiSalvo Robert Kary Karen Neiffer David Teague Barbara Bode Sarah Dorman Kevin Kitze Barry Pennell Jackie Thompson & Gene Memorials Constance Catalfio Robin Duckworth Patricia Kline Kenneth Pullig Frazer Dr. Thomas Assiff – N.K. Adadow Gray, Dub Hearon, Hannah Cathy Clark Shirin Emami Marilyn Kohl Jacque Redmond Damien Wanner Janney & Michael Schenkel, Ruth & Lou Kibler, Raymond Pamela Collins Lawrence Eppolito M. Eileen LaGrotta & Viktoria Schaub Linda Weingarten Litwinowicz, Maria Fernandez Smyka Pamela Cotton Joan Gates & Byron Clare Walsh Rebecca Schull Dennis Weiss Ellen Culbertson Fitzgerald Joni Lefkowitz Pam Stewart Gail Woods Susan Boyle – Elizabeth Hurlbut & Helen Blanchard Robert & Eleanor Demple Janet Greenwald Juliana Maglathlin Barbara Straub Aaron Bruck – Esther & William London Family Foundation Mary Griffith Nancy & Andy Mestrovic Patricia Sullivan Sarah Carter – Margaret Parrott, Tim & Judy Parrott, Hermine Roberts Fundraisers Duncan Cruickshanks – Jessica & Mark Tesell Howl at the Moon $16,540 • Gross & Welch, P.C., L.L.O., Jeans Day $80.00 • Oxford Autoimmune Race Across America Lord & Taylor Coupon Book Fundraiser $555.00 • Yogibo Fundraiser $150.00 • 50 Cents for 50 Million Sara Kozisek – Glenn & Linda Leith, Norman & Caryl Pittsburgh Marathon $1,434 • Raising awareness in honor of Cara Lian Lebedda $2,155 • Stoop Sale $242.00 Thielman, Chris & Nate Ward Cathryn Palmer – Craig Johnson, Tom & Joni McDonald, Payroll Deduction Programs ($50 or more) Shannon Rose Agilent Technologies • Allstate • AT & T • Chevron • Cigna Foundation • Give with Liberty • Global Impact Everett Rinehart – Barbara Rinehart Goldman, Sachs & Co. • Halliburton • IBM • Maryland Charity Campaign • Merck • Morgan Stanley Shell Oil Company • Silicon Valley Community Foundation • Truist Ver a Ro oney – Michael & Susan Belmonte, Dorothea Colangelo, Mrs. Lynn Miculcy, The Schacters United Way: Allegheny County, California Capital Region, Northern New Mexico, Southeastern Pennsylvania Xcel Energy Foundation Lorraine Salsbury – Dick Shumacker Ruth & Harold Sussman – Paula Abrams Friends (to $49) and Autoimmune Walk Donors Estelle Marie Whitehurst – John & Ann Marie Meisner Contributions in this category are too numerous to print, but we would like to say “thank you” again for the many donations that have been made. These loyal friends are noted with appreciation.

Promising vaccine continued from page 6

lot of disappointment [from other research].” She comments that the trial. The initial boost came with a $10 million grant, and subsequent trial is ambitious because it is focusing on people who have had type I support, from former Chrysler CEO Lee Iacocca through his Iacocca diabetes for many years. Other research has looked at treating people Family Foundation, founded in memory of his late wife Mary who died with diabetes close to diagnosis. Dr. Faustman says that the trial will of complications from diabetes. Dr. Faustman says of Mr. Iacocca, “He help determine what type of dosing may be needed for the vaccine to gets the credit for supporting the basic science that led to the discovery be successful. that TNF [tumor necrosis factor] is needed in type 1 diabetes.” With a severe shortage of BCG, Dr. Faustman and Massachusetts Lee Iacocca says, “I made a promise to my late wife to find a General Hospital collaborated with a division of the Bill and Melinda cure for type 1 diabetes. Now my family and I look forward to the Gates Foundation and the World Health Organization to secure the continued progress and are proud to support this effort to get closer vaccine for the trial from a drug manufacturer run by the Japanese to that goal.” government. Dr. Faustman comments, “We had to get the FDA to certify that [the manufacturer’s] processes are up to U.S. standards so --Sources: Denise L. Faustman, M.D., Ph.D., Massachusetts General the BCG can be used for trials.” Hospital, Charlestown, MA, July 13, 2015; “The Vaccine for Type-1 As is true with most research, funding for this study still is Diabetes Is Moving Forward,” Alexandra Sifferlin, Time Inc., June 7, 2015; being sought, with only $19 million having been contributed to date “Here’s How Lee Iacocca Wants To Cure Diabetes,” Forbes Magazine, June by philanthropic donors toward the $25 million goal for the Phase II 7, 2015

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10 AARDA Scientifi c Advisory Board Joseph E. Craft, M.D. Bevra H. Hahn, M.D. Kenneth Olden, Ph.D., ScD. Hartmut Wekerle, M.D. Professor of Medicine and Professor of Medicine Founding Dean Professor; Director Chairperson Immunobiology Vice Chair, Department of Medicine School of Public Health Department of Neuroimmunology Betty Diamond, M.D. Chief, Section of Rheumatology Chief of Rheumatology Hunter College Max-Planck-Institut für Center Head Department of Internal Medicine University of California, Los Angeles New York, NY, U.S.A. Neurobiologie Department of Autoimmune Diseases Yale University School of Medicine Los Angeles, CA, U.S.A. Michelle Petri, M.D., M.P.H. Planegg -Martinsried, Germany New Haven, CT, U.S.A. The Feinstein Institute for E. Nigel Harris, MPhil, M.D., D.M. Professor of Medicine Caroline Whitacre, Ph.D. Medical Research Maurizio Cutolo, M.D. Retired Division of Molecular and Clinical Vice President for Research North Shore - Long Island Jewish Professor The University of the West Indies Rheumatology Offi ce of Research Health System Director for Laboratory Research Jamaica, West Indies Department of Medicine Professor, Department of Microbial Manhasset, NY, U.S.A. and Division of Rheumatology Johns Hopkins University Infection and Immunity Department of Internal Medicine Steven A. Krilis, Ph.D. Baltimore, MD, U.S.A. The Ohio State University Frank C. Arnett, M.D. Head, Department of Immunology, Retired University of Genova Robert Phillips, Ph.D Columbus, OH, U.S.A. Genova, Italy Allergy and Infectious Disease University of Texas Medical School at The St. George Hospital Director Luis A. Diaz, M.D. Chairman Emeritus Houston Kogarah, New South Wales, Australia Center for Coping Houston, TX, U.S.A. Professor and Chairman Long Island, NY, U.S.A. Noel R. Rose, M.D., Ph.D. Department of Dermatology Parviz Lalezari, M.D. Professor of Pathology and of Jean-François Bach, M.D., D.Sc. Yehuda Shoenfeld, M.D. University of North Carolina at Chapel Hill Clinical Professor Molecular Microbiology Professor of Immunology Head, Department of Medicine ‘B’ Chapel Hill, NC, U.S.A. Department of Medicine and Pathology and Immunology Head, Clinical Immunology Unit and and Center for Autoimmune Diseases Albert Einstein College of Medicine Director, Center for Autoimmune Immunology Research Laboratories Robert A. Eisenberg, M.D. Chaim Sheba Medical Center Montefi ore Medical Center Disease Research Hôpital Necker Professor of Medicine, Emeritus (Affi liated to Tel-Aviv University) Bronx, NY, USA Bloomberg School of Public Health Paris, France Department of Medicine Incumbent of the Laura Schwarz-Kipp President Johns Hopkins University University of Pennsylvania Chair for Research of Autoimmune Nicholas Chiorazzi, M.D. The Biomedical Research Institute Baltimore, MD, U.S.A. Philadelphia, PA, U.S.A. Diseases Investigator Scarsdale, NY, U.S.A. The Feinstein Institute for M. Eric Gershwin, M.D. Tel-Aviv University Medical Research Distinguished Professor of Medicine Ian R. Mackay, A.M., M.D., F.A.A. Tel-Hashomer, Israel Manhasset, NY, U.S.A. The Jack and Donald Chia Professor (Honorary) Yaron Tomer, M.D. Professor of Medicine and Professor of Medicine Department of Biochemistry and Professor of Medicine of Cell Biology Chief, Division of Rheumatology, Molecular Biology Chief, Division of Endocrinology, Albert Einstein College of Medicine Allergy and Clinical Immunology Monash University Diabetes and Bone Disease Bronx, NY, U.S.A. School of Medicine Clayton Victoria, Australia Director, Metabolism Institute University of California, Davis Mount Sinai School of Medicine Davis, CA, U.S.A. New York, NY, U.S.A.

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Local Contacts, USA Arkansas Susan Eslick ...... (501) 317-5173 Inside this issue California Arlene Encell ...... [email protected] (West Los Angeles/Santa Monica area) Connecticut Geri Viola Callahan ...... (203) 656-2866 President/Executive Director’s message ...... 1 Illinois Lorell Jones ...... (773) 294-1772 (Chicago area) Acorns to mighty oaks--we believe! ...... 1 Affordable Care Act still needs fi xing ...... 2 Michigan Kimberly Radomski .....(586) 741-9918 (Clinton Township area; Peer Group) AARDA and NCAPG represented at WHO meeting ...... 3 Rita Wilson ...... (313) 382-9424 (Detroit Downriver area) A book worth reading: The Lupus Encyclopedia ...... 3 Nevada Mercedes Barris ...... (702) 617-0072 Capping prescription drug prices: A good idea? ...... 4 New Jersey Althea Cices ...... (845) 517-2491 Lyme disease--an autoimmune connection? ...... 4 New York Althea Cices ...... (845) 517-2491 Creativity and energy benefi t AARDA ...... 5 Oklahoma Virginia C. Caldwell ...... (405) 524-2472 Autoimmune Walk campaign continues coast to coast ...... 5 A book worth reading: The Marvelous Transformation .....6 South Carolina Stanley Finger ...... (843) 705-5580 It’s “Linked Fore a Cure” time in Chicago ...... 6 Charlie Wofford ...... (864) 271-2750 Rituxan enters phase III clinical trial...... 6 Texas Jean Palmeri ...... [email protected] (Support Group, San Antonio area) Promising vaccine to reverse type 1 diabetes ...... 6 Virginia Jennifer Aaron ...... (304) 229-0439 (Shenandoah Valley area) What do rheumatoid arthritis patients have to say? ...... 7 West Virginia Jennifer Aaron ...... (304) 229-0439 (Eastern Panhandle area) Upcoming Education Events for 2015 ...... 7 Save the date and celebrate: It’s Derby Time! ...... 7 Washington DC area Michelle Ouellet ...... (703) 893-1681 P. Buckley Moss print for keeping or gifting...... 7 Washington State Laura Ann Evans ...... (509) 659-0594 (Spokane area) New mechanism may explain autoimmune uveitis ...... 8 Carol Robl ...... (425) 747-7919 Serendipity and MS--When is a lab error a plus? ...... 8 New discovery overturns textbooks teaching ...... 9 Local Contacts, International Uveitis, psoriasis, psoriatic arthritis--a connection ...... 9 Just breathe...well, let’s think about it ...... 9 Israel Sarah Krein...... 972-54-810-1245 AARDA says “thank you” to...... 10 Italy Christine Gammon ...... 085-9353560 (Support Group) With Special Thoughts...Tributes and Memorials...... 10