A nonprofit association bringing a national focus to autoimmunity, the major cause of chronic diseases Vol. 25, No. 4, December 2017 What medication? Who decides? Gerald “Jerry” Ladd AARDA survey seeks viewpoints June 9, 1939 - September 14, 2017 Non-medical switching, step therapy, biologics reduce inflammation that can lead and the doctor-patient relationship--all of to debilitating symptoms or damage to vital these topics have been causes of concern for organs if their administration is delayed. For AARDA in working with members and other the patient who changes insurers, the delay friends. A recently completed AARDA survey may be greatly increased as the step process of 500 randomly chosen Michigan residents is repeated multiple times. shows that many respondents have similar Dominick Pallone, Executive Director concerns; and most Michigan residents think of the Michigan Association of Health their doctors--not their health insurance Plans (MAHP), explains that the insurers companies--should decide what medications “use policies such as step therapy or prior they should take. authorization as ways to help provide Virginia Ladd, AARDA President and their members with access to high quality A dear AARDA family member, Executive Director, says, “About a year ago, healthcare while trying to contain costs.” He Jerry Ladd, left us this past September we started really getting an increase in the says, “MAHP appreciates the opportunity that 14 after an extended illness. A supporter number of calls [about] pre-authorization-- this survey presents to have a dialogue about of AARDA from its very beginning, he step therapy was a big one; and even where the true concerns of the American public-- was a hands-on volunteer and part- patients were just being switched [to a unsustainably high drug prices, and [their] time staff member, termed Director different medication] without even the impact on the affordability of health care.” of Operations but taking on many doctor having any say in the decision. However, as patients--especially auto- responsibilities as needed. “To me, it is a matter of principle that the immune patients--know, delaying use of the Jerry was a compassionate doctor-patient relationship is being eroded most effective drug not only can result in listener and counselor to many young significantly by such insurance practices. serious damage to the patient’s body but also people whose lives were enriched by Doctors have many years of education and may even increase the cost of his or her care, his interest in them and to patients training in order to be licensed to practice to both the insurer and the patient. and their family members who called medicine. It is a major concern when Virginia Ladd says, “When autoimmune AARDA for both autoimmune facts someone without such training and licensing disease...starts to involve the major organs or and encouragement. He also shared can override a doctor’s decision regarding the joints, that is when the new biologics, which that knowledge and understanding as best treatment for his/her patient.” fortunately came on line about 12 years a speaker at AARDA public meetings. The first drugs of choice for many ago, made a significant difference for those He believed deeply in AARDA’s mission. autoimmune diseases, such as the patients--even a life-saving difference. Even shortly before his passing, Jerry corticosteroids, are less expensive than the “When you have inflammation that’s was making sure that certain AARDA newer options but often don’t work for the prolonged or becomes chronic, it can cause details were covered. Those who knew most serious cases. scar tissue,” Virginia explains. “Scar tissue Jerry well will understand! Biologics, a new class of medications, in the kidneys cannot be reversed. You end Jerry and Virginia shared 55 years have brought hope to many people with up with severe kidney disease and often a of marriage--a partnership not only autoimmune disorders. However, they can transplant. In the case of multiple sclerosis, of love for each other but also love cost tens of thousands of dollars annually, you have scar tissue affecting the nervous and dedication to family and many and insurers often require patients to try less system. You end up back in a wheel chair, and philanthropic endeavors, from local to expensive drugs first, a process referred to then you become disabled.” Article continued on page 10 as step therapy, while ignoring the fact that Article continued on page 4 InFocus, a quarterly newsletter of the President/Executive Director’s Message Amercian Autoimmune Related Diseases Association, Inc. (DBA Autoimmune Diseases Association) — Virginia T. Ladd 22100 Gratiot Avenue, Eastpointe, MI 48021-2227 Phone 586-776-3900; Fax 586-776-3903; Dear AARDA Friends, E-mail: [email protected]; Web: www.aarda.org ~ Editor ~ This time of year marks an ending, a transition, a beginning, and Eula M. Hoover, Executive Assistant reasons for rejoicing. If we stop long enough to take in the fullness of the ~ Editorial Reviewers ~ season, it seems almost overwhelming in its beauty and promise. My hope for you is that you can Virginia T. Ladd, AARDA President/Executive Director Laura Simpson, Assistant Director find your own special moments. Cathleen Cruchon, Accounting/Database I will share with you, my AARDA friends, that I have now experienced my own personal ~ Contributors ~ ending and transition. As you read in this newsletter, in September my husband Jerry succumbed Deb Patrick, Special Events/Walk Coordinator Katie Simons, Administrative Assistant to a terminal illness. While I move through this ending and the transition, I know that I share ~ Distribution Coordinator ~ such a time with many others. I have the good fortune of loving support for this new time in my Cathleen Cruchon, Accounting/Database life, and I am thankful to all of you and the living mission of AARDA. Opinions expressed in this newsletter do not necessarily reflect the In the meantime, life in AARDA keeps moving along--26 years and counting! While “the views of the American Autoimmune Related Diseases Association, its Board of Directors, or its Scientific Advisory Board. Information cure” has eluded us, we know that the autoimmune star is shining brightly with improved is intended for general interest only, not for medical diagnosis or diagnostic techniques, compassionate care, exciting research bringing new medicines, and advice. Please request permission before reproducing, in whole or in part, material contained in this newsletter. Contact the Editor at growing knowledge of the value of integrative and complementary medical care to enhance the [email protected] or 586-776-3900. total health care picture. Out of the past and into the future is the never-ending fight for research dollars. Thanks ~ AARDA Officers and Board Members ~ to generous donors--individuals and foundations--we have been able to continue to contribute Chairman of the Board – Herbert G. Ford, D.Min. to autoimmune research at major institutions: Johns Hopkins, National Institutes of Health, President, NECABA Management Group, Inc., Detroit, Michigan Pastor, Good Shepherd Missionary Baptist Church, Southfield, Michigan Feinstein Institute for Medical Research, University of California, Massachusetts General Vice Chairman of the Board – Stanley M. Finger, Ph.D. Hospital, and Harvard University to name a few. President, Environmental Consulting and Investigations, In the areas of diagnosis and treatment, we have seen our modest financial grant to a pilot Fort Mill, South Carolina program at MidMichigan Health grow to a significant number of autoimmune patients coming President – Virginia T. Ladd for diagnosis and follow-up. Executive Director, Autoimmune Diseases Association, Eastpointe, Michigan We also have seen the establishment of our own fund to encourage the founding of a Treasurer – Richard M. Hodge National Diagnostic and Treatment Center. Affectionately called our “Acorn’s Promise,” the fund Fairfax Station, Virginia has grown with a number of personal contributions--but we still are looking for that major Secretary – Nona Bear philanthropist who will bring the Center into reality. Health Care Consultant, Ashburn, Virginia Since this is the time for our Annual Appeal, the once-a-year invitation to all of our friends, I urge you to lend your support--whatever is possible for you--to the autoimmune cause. Requests ~ Board of Directors ~ for autoimmune information are increasing daily, researchers are desperate for autoimmune Michael J. Linn research grants, and we at AARDA are working to make the dollars match the demands. Chief Operating Officer, Varadero Capital, L.P., New York, NY Thanks to careful management and the involvement of many volunteers and in-kind services, we Michelle Ouellet keep our management expenses well below the limit for nonprofit organizations--at 7.7 percent CACI International, Vienna, Virginia of our expenditures in 2016. The 50 Million are depending on us. Robert H. Phillips, Ph.D. To all of you, during this glorious season of celebration, I send my best wishes for joy, good Director, Center for Coping, Long Island, NY health, and many blessings in the year ahead. Scott E. Selby Head of Business Development, Varadero Capital, L.P., New York, NY With appreciation, Lilly Stairs Head of Patient Advocacy Relations, Clara Health, Virginia Cambridge, Massachusetts ~ Advisors to the Board (Nonvoting) ~ Edward K. Christian In memory of Rita President/CEO ~ Saga Communications, Inc., Grosse Pointe Farms, Michigan Howard E. Hagon We mourn the loss of a dear AARDA friend, Rita Wilson. From the very beginning of Owner (Retired), Contour Fabricators, AARDA, Rita gave her support to both the organization and to other autoimmune sufferers, Swartz Creek, Michigan, and Ellenton, Florida especially through her Downriver Detroit Support Group. She was one of AARDA's earliest Stephanie P. Hales Partner, Sidley Austin LLP, Washington, DC local contacts, offering a lending ear to autoimmune patients and others. Rita will be missed Robert Meyer, CPA by loving family members and all of us who had the pleasure of knowing her, a beautiful, President, Fort Wayne Insurance Services, Inc.