10 Tips for Parents with Chronic Disease
Bridging the gap between life with lupus today and life without lupus tomorrow.
Health Care Open Enrollment
Update on Lupus Research and Advocacy
The newSLEtter Fall 2017
Erin with Assemblymember David Chiu, Sponsor, Lupus Awareness Resolution
A Note from Erin Badillo, Executive Director
Join us for the Fifth Annual Purple Ribbon Awards Commemorating 40 years of service to the lupus community Saturday, February 10, 2018 | San Jose Marriott 5pm Cocktails | 7pm Dinner and Awards | 9pm Dinner and Dancing Theme: The 70s
Dear Friends: The greatest privilege, and sometimes the toughest part, of my job is hearing the stories from lupus warriors. Each individual shows such strength and courage in the face of so much pain, often-inadequate treatments, and difficulties. Rarely do they let those struggles overcome. They fight each day with a smile on their faces. I am honored to have a front row seat to their journeys and to fight alongside them. 2016-2017 was my first full fiscal year with the Lupus Foundation of Northern California. Thanks to incredible generosity of donors and remarkable work from our volunteers, Board members, and staff, I am proud to say it was a year of accelerating growth for the Foundation. We increased our annual revenue by 41%. Your support resulted in two of our most successful fundraising events and formed new corporate partnerships. That growth has allowed us to double our direct patient support for this current year. We continue to grow with this fall's Pour for a Cure, allowing for LFNC’s largest contribution to research ever. In order to invest even more so that we can continuously innovate in our programs and help more patients, I am determined to transform LFNC into a stronger, more financially stable organization. I know that we can write that next exciting chapter together. Some of my favorite things from this past year include the launch of Lupus 101 in November, which allows patients to converse with experts from the convenience of their home; visiting Capitol Hill to advocate on behalf of our patients and having 10 additional California representatives join the Lupus Caucus; and dancing the night away at our 4th Annual Purple Ribbon Awards. I’m excited for all the things to come this year. With all of you, I look forward to creating a strong future for LFNC. We will raise more resources, grow our programs, reach more communities, and most importantly, help more lupus patients. Please join me as we build a bridge to life without lupus. Thank you, Erin C. Badillo
ABOUT LUPUS A chronic and complex autoimmune disease, lupus can affect the joints, skin, brain, lungs, kidneys, & blood vessels, causing widespread inflammation & tissue damage in the affected organ. LFNC BOARD OF DIRECTORS 2017-18 Carol Siebenmorgen CHAIR Douglas A. Carlen, Esq. Vice Chair Greg Genetti, CPA Treasurer Regina Pryor Secretary Deidre Gee Baptista Janelle Brown Roberta Kracht, LCSW Tzielan Lee, MD Kirsten Gee Maeda Misty M. Reistad Jay Remley DIRECTORS LFNC Staff Erin C. Badillo EXECUTIVE DIRECTOR Maggie Madueno OUTREACH DIRECTOR Spandan Chakrabarti COMMUNICATIONS MANAGER Christine Von Raesfeld VOLUNTEER SOCIAL MEDIA COORDINATOR Sobia Saleem VOLUNTEER BUDDY PROGRAM COORDINATOR Marielle Vea VOLUNTEER, SOCIAL MEDIA
1. Find balance. Both parenthood and chronic illness become a huge part of your identity and both can fight for control over your time, energy, and some days, sanity. Finding humor in everyday situations (as frustrating as they can sometimes be), understanding and addressing your children’s concerns about your illness, and making sure that you are taking care of your own personal well-being(as well as you care for others) are all crucial to finding that balance. 2. Know your limits. If you are having a bad day (or low on “spoons”), order takeout for dinner, ignore the dust-bunnies, and let the laundry go unwashed, it can all wait. Your health and well-being are more important than a dirty-dish-filled sink. Call in reinforcements if you have them- relatives or neighbors, just know when to ask for help. 3. Don’t dwell on the negative. This is understandably more easily said than done, but understand that you are not your illness. The ability to find gratitude in even the smallest things can change your perceptions on a daily basis. This is a skill that takes practice. Remember, a bad 5 minutes does not equate a bad day. 4. Change your expectations and learn to navigate your “new normal.” This one may be the toughest to accomplish. Your vision of what family life would and should be based on past ideas and hopes might need to be dramatically altered to allow for having an unpredictable illness. This is not to say that you should give up on your hopes and dreams, but continually dwelling on the past can prevent you from seeing any joy or satisfaction in the present. Even if it is not exactly as you had envisioned, life is a gift. Your children live in the present and need you to be present with them. 5. Limit younger children to one manageable room. If your children are young and need more supervision this can be a daunting task for those on-the-go little ones. Fixing the environment (baby gates, closed doors, etc.) so that all of your small people are in one, easy to manage location within your sight lines, can keep things at least manageable. This is great, especially if laying reclined on the couch or in your bed is the place that you need to be. 6. Learn to accept the cycle of unpredictability. One day you may wake up and feel like you are on top of the world but the next day it feels as if the world is literally crumbling down on top of you. That is the cruel nature of chronic illnesses. The needs of your children are constant, but your physical well-being may not be. Understanding this, accepting this, helping others around you accept and understand this can go a long way in reducing stress. 7. Join support groups. Reaching out to other people via support groups who are going through similar struggles and even triumphs can provide the emotional support needed to get through the toughest of days and be a great source of encouragement and advice. LFNC support groups can be located on LFNC.org. 8. Seek help from a mental health provider. Stress is a fact of life for everyone, but especially for those living with a chronic condition. There is no shame in asking for the help and guidance from someone in the mental health field. This can be in the form of a psychologist, counselor, therapist, etc. 9. Learn to put your needs first. You cannot be your best for others if you are not your best for yourself. Find time for relaxation, yoga, meditation, early bedtime, gentle exercise, reading, a movie date with a friend, or whatever else brings you joy! 10. Be open to the possibility that there is something positive to be gained from having a chronic disease, for example that you are a source of strength to others by way of your example.
We thank Molly's Fund Fighting Lupus for allowing us to reprint the above article from their blog. Read more like this at MollysFund.org.
10 Helpful Tips For Parents Living with Chronic Disease by Karrie Sundbom
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Maggie Madueno: 10 Years of Above and Beyond
Volunteer: Volunteers are at the heart of our mission and work alongside staff. From making our events succeed on-site to program support and the behind-the-scenes work that happens at the office, you are bound to find something you like. Give us a call at 408-954-8600 or send an email to outreach@lfnc.org. Serve on a Committee: If you want to take the next step in leadership, join one of our committees: Outreach, Fundraising, or Tech. Email Erin at erin@lfnc.org. Get the Word Out: If you are a business owner or manager, we want to hear from you! Help us get the word out by putting up material in your storefront, reception desk, or window. Call us at (408) 954-8600 or email outreach@lfnc.org
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Maggie Madueno began her career at the Lupus Foundation of Northern California in August 2007. With her deep roots into the local community, Maggie was the perfect candidate for Director of Outreach. She has proven to be that and more. From patients and volunteers to interns and Board members, everyone who has crossed paths with LFNC in the last decade has been impacted by Maggie's kindness, wisdom, and patience. Maggie has not just gone above and beyond her duties at LFNC, she has in many ways shaped a new generation of leadership in the lupus community. "When I first got diagnosed with lupus and walked into LFNC, ... she made me feel like I was safe, I belonged--and I believed her." says Sobia Saleem, just one of the many patients whose lives Maggie has changed for the better over the years. Christine Von Raesfeld, another patient and leader, says "When I am having a crisis, I can always call Maggie and know she will talk me through it." Another volunteer and patient says, "Maggie is like a big sister. She is one of the main reasons that I keep going back to LFNC to volunteer". Maggie's history with LFNC includes acts of extraordinary sacrifice, too. In the wake of the Great Recession when LFNC was in danger of having to close our doors and was forced to lay off all staff, Maggie kept coming to the office, volunteering her time and doing her job without pay. "It is that deep commitment to patients, that abiding willingness to sacrifice with a smile that makes coming to work with her everyday such an amazing experience," says Spandan Chakrabarti, LFNC's Communications Manager and Maggie's longest cohort at the Foundation. "She is an inspiration." Maggie has also spearheaded LFNC's outreach to Hispanic and Spanish-speaking lupus patients. She has helped these patients and families overcome their language barrier to understand their disease and communicate with providers. This past year, her leadership helped bring back LFNC's Spanish-language conference. LFNC is fortunate to have Maggie's dedication and her service. Although she has been here 10 years, the true impact Maggie has made on the Northern California lupus community can best be measured in the smiles she's put on the faces of hundreds of patients, in the sense of belonging she has given to everyone who's walked in our doors, and in the selfless sacrifices she has made for LFNC family.
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Photo from WOCintechchat.com
Breaking Barriers in Education and Service
Lupus 101: Learning in the Palm of Your Hand. We have updated our historical Brown Bag lunches - single topic lectures and discussions - with Lupus 101. These allow patients access and opportunities to participate in the discussion unrestricted by location. The sessions - usually with an expert - are broadcast on Facebook Live, and anyone can tune in, ask questions, and get informed. So far, topics have included nutrition, cannabis in pain management, "Ask a Rheumatologist", disaster preparedness, living kidney donation, and more. Because patients and their loved ones can tune in wherever they are with any connected device, Lupus 101 is our fastest growing education program. These videos have been viewed thousands of times and are available to patients in every corner of the country and even internationally. Online Patient Education Classes. LFNC continues to hold four yearly Patient Education Classes, which are introductory courses for disease management. Following teaching guidelines from the American College of Rheumatology, these classes discuss common issues, medications, management, communications and more. Starting this year, LFNC is holding two of these classes online to broaden access to a greater number of patients. Spanish Language Conference Returns. Given lupus' disproportionate impact on communities of color and the need for culturally competent care, LFNC has long strived to provide assistance to patients in as many languages as possible. LFNC regularly held Spanish language conferences along with two English-language ones, but due to the lack of resources, the Spanish language conference was put on hold. We are excited to announce that in March of 2017, the Spanish language conference returned, headlined by Dr. Christina Lanata of UCSF, and attended by 22 patients and family members. We will be hosting this conference again in March 2018 - keep a look out for details. Lupus Buddy Program and Pop-ups. Now in its third year, the Lupus Buddy Program seeks to break the barrier of many patients' apprehension about approaching larger support group settings by pairing patients with one another. In addition to being able serve patients who cannot attend or do not feel comfortable in group settings, the Buddy Program also allows us to reach beyond our region. Since most of the coordination of the Buddy Program happens online and Buddies can choose their own methods of interaction, patients from across the country have signed up for this program that breaks down geographic barriers. Patients who are part of the Buddy Program are also coming together in social activities with new Buddy Pop-up events. With fun activities like comedy nights and makeup classes, we are addressing the social needs of patients, not just their medical condition. For more information and to take part, please visit LFNC.org or give us a call at 408-954-8600.
Every lupus patient and their loved ones deserve access to information and services, regardless of background, location, language or finances. LFNC is stepping up, reaching beyond the classroom, knocking down language barriers, and serving social, not just medical, needs of the community.
Expense Breakdown LFNC’s expense percentages are similar to FY16, with a reduction in admin expenses from 15% in FY16 to 8% in FY17 and a slight increase in fundraising expenses from 32% to 35%.
Revenue Sources FY17’s top source of revenue was our special events (Charity Drawing, Outrun Lupus 5K, & Purple Ribbon Awards). Our second highest revenue stream was grants, primarily due to our longstanding relationship with Beta Sigma Phi. The 10 BSP California Councils donated over $40,000 in FY 2017.
Fiscal Year 2017 (July 1, 2016-June 30,2017) Please note, these are un-audited financials. Following our audit, updated financial reports will be available upon request.
Financial Snapshot in Charts
FY17 was LFNC’s most successful year of the past three. We raised $460,215, a 41% increase over the previous year. Expenses also grew, primarily due to growth of our special events. In addition, we finished FY17 with a small surplus, instead of a deficit as in the previous two years.
An Expanding Purple Ribbon Awards: In January 2017, LFNC held its fourth Annual Purple Ribbon Awards, and the first with Executive Director Erin Badillo at the helm. The Purple Ribbon Awards honored outstanding contributions to the lupus community, and raised over $110,000 for key programs and services, another far-and-away record. A rising star among the patient community in the East Bay, Jane Tiphayachan, addressed the attendees as the Face of Lupus. Attendees were entertained with a social hour, live and silent auctions, and even dancing! The following are this year's honorees: Christy I. Sandborg, M.D, Outstanding Commitment to Treatment and Research Rose Flores, Outstanding Community Service State Sen. John M. W. Moorlach, Outstanding Legislative Ally Elana Dayen, Leyla Hidalgo, Madelyn Hidalgo, Kylie Mukoyama, Youth Leadership
The Lupus Foundation of Northern California has always been resilient. With 40 years under our belt, LFNC has stuck it out through thick and thin thanks to the extraordinary dedication and at times, sacrifice of its volunteers, Board members, and staff, and the unrelenting support of a community from whom each of us draws inspiration. Through the shadows of the Great Recession and the ensuing times, LFNC has had to stretch resources often. But we have never lost faith. We expect to close our doors one day, but because a cure is found, not because we succumb to financial challenges. That faith, coupled with new leadership, our donors' extraordinary commitments and a rejuvenated Board of Directors has begun to bear fruit. While challenges remain, LFNC is in a better financial position now than at any time in the past decade. Below is a snapshot of how you made this possible.
Financial Snapshot: A Time of Growth
A Record-setting 5K: 2017's Outrun Lupus 5K was one for the history books - raising over $100,000 and with 900 attendees. Team Marielle, named after this year's honoree, Marielle Vea, made history by becoming the first-ever three-digit-team, with 117 walkers and runners! Team Marielle was also the top fundraising team raising an impressive $15,000. We can't thank our runners and walkers, volunteers, donors and sponsors enough for making history with us!
Major Donors
$15,000 and Above ANONYMOUS CHAR BAKER FAMILY TRUST JAY & SIVI REMLEY $10,000 and $14,999 23andME BETA SIGMA PHI NORTHERN CALIFORNIA COUNCIL ORINOCO FOUNDATION TERASAKI FOUNDATION $5,000-$9,999 BETA SIGMA PHI INTERNATIONAL BETA SIGMA PHI MISSION CALIFORNIA COUNCIL BETA SIGMA PHI SOUTHERN CALIFORNIA COUNCIL CONFLUENT MEDICAL TECHNOLOGIES GOOGLE DOUG & KARLA CARLEN GREGORY & MARY C. GENETTI JEFFREY N. & ANNE MARIE KATZ ROBERTA & JOHN KRACHT RONALD & BEVERLY WONG STANFORD CHILDREN'S $2,500-$4,999 BART & KIRSTEN MAEDA BETA SIGMA PHI CAMINO REAL CALIFORNIA COUNCIL BETA SIGMA PHI CENTRAL CALIFORNIA COUNCIL BETA SIGMA PHI ORANGE COAST CALIFORNIA COUNCIL BETA SIGMA PHI PACIFIC CALIFORNIA COUNCIL BRUCE & CHRISTY SANDBORG CAROL SIEBENMORGEN ERIN BADILLO & JONATHAN FEARN BADILLO IMELDA BALBONI JIM BARNETT & MARY BETH HOLMAN MALLINCKRODT PHARMACEUTICALS SAN JOSE FIREFIGHTERS LOCAL 230 SARAH GOOZEE & ROB MAYEDA SHARON SPENCER VOCERA COMMUNICATIONS, INC $1,000-$2,499 AMY SCHWEITZER APPLE AURINA PHARMACEUTICALS INC. BARRY SHIBUYA, MD BILEN & BENYAM AYALEW BETA SIGMA PHI FAR NORTHERN CALIFORNIA COUNCIL CARLSEN MOTOR CARS CHELSEY SEIPPEL & SCOTT WHITE DANETTE ONDI DEBORAH PARKINSON DIANE WILSON DOUG & AJMIR THOMPKINS EAST BAY RHEUMATOLOGY ELAINE & SCOTT SCHULTZ ELLIE & TODD POLLAK FRANKLIN DICKEY GATEWAY KIDNEY AND HYPERTENSION JANELLE & PATRICK BROWN JOHN & MARSHA GOLDMAN PHILANTHROPIC FUND JUDI SMITH KELLY & KENNETH GLASS LOCAL INDEPENDENT CHARITIES OF AMERICA LOLLY & JULITO VEA MICHAEL & KATJA DE GROOT MISTY M. REISTAD & LARRY SCHREIBER NANCY & DAN STEBBINS PHILIP & LUCRETIA NELSON REGINA & DOUGLAS PRYOR ROBIN CHIANG-PERDUE ROLAND & LYNNE MONTALBO SHARON JUANG & PAUL CHIU SHAWN STORY SILICON VALLEY COMMUNITY FOUNDATION STAR ONE CREDIT UNION SYMANTEC CORP THE MANNY & CECILE HERNANDEZ CHARITABLE FOUNDATION THE PETER J SEIPPEL FOUNDATION TINA DELAOSSA TZIELAN LEE & FRANK LIU $500-$999 ADAM BARZEL ADELE HELMGREN ADRIENNE BAKER AMAZONSMILE FOUNDATION ANTHONY & BARBARA MORIN ARMIN & MITRA SOROOSHIAN AVA CHAN BATON ROUGE AREA FOUNDATION BAY AREA KIDS DENTIST CYNTHIA CHAN DAR KIM INC ALL SEASONS RV DEBRA & JAY REMLEY, SR. DONALD & JOCYLINE VON RAESFELD DONNA GILES DR. MICHAEL & SUSAN NEUWELT EMMY & JEFF FEARN EVGENYA & YURY FRIEDMAN EXAGEN DIAGNOSTICS FERNANDO & LINA VIRAY FRANK W. & MARGARET B. ADELSTEIN GLIDER ELEMENTARY SCHOOL GREGORY & LINDA RICE GUY SENE JAMES GOWER JEANNIE NYBERG JERRY SIEBENMORGEN & MICHAEL PELLKOFER JOE STRETCH STATE FARM JOEL JOHNSON KEYSIGHT TECHNOLOGY LARRY & NANCY BRADLEY LEENA NAIR MARCIA & ROBERT FALSARELLA MARI AVILA MARK & CHARLOTTE PENNELL MARK & LISA TRAIL MICHAEL KISSINGER NELDA MCCALL NISRINE NAMMOUR PAYPAL GIVING FUND RITA DONOVAN-ROTH ROBERT LEWIS SIMON H LINWOOD STEPHANIE DEVINE
The Amazing Sisters at Beta Sigma Phi: The Beta Sigma Phi Sorority has been supporting LFNC for 38 years and remain LFNC's largest institutional supporter. Total contributions from BSP to LFNC now near $900,000.
Highlights in Services: Programs and Support
Future Events: Make sure you are signed up for our e-newsletter and follow us on social media to stay current on patient-focused activities, especially our monthly Lupus 101 series on Facebook Live. Dec. 2: Mini-Conference on Lupus and Pregnancy at Stanford. Feb. 24: Patient Education Class in San Jose. March TBD: Spanish-language lupus mini-conference May 19: Online Patient Education Class.
Lupus Leaders Facilitation Training: In October, LFNC brought together support group facilitators and upcoming leaders from LFNC support groups across Northern California for professional facilitation training. The training was free of charge to the 16 leaders in attendance, and anyone who needed was offered accommodation for the night prior to the all-day training.
Special Education Event in Natomas, Sacramento (July 2017): Local patient and lupus activist Pauline Garcia took the first steps to bringing a special version of LFNC's lupus patient education curriculum to the Natomas neighborhood of Sacramento, yet another neighborhood where lupus reaches but the conveniences of metropolis rarely does. Like the August conference in Santa Rosa, LFNC takes pride in serving underserved locations. If you would like to see a special education event like this in your community, contact us at 408-954-8600 or email spandan@lfnc.org.
Quiet, Dignified Warriors | Sobia Saleem
Patient Focused Drug Development
As someone who has had lupus for five years now, as someone who has had to go on medical leave from school and work because of this illness, as someone who as championed for the cure to this cruel mystery even while getting chemotherapy infusions, I was proud to be amongst lupus warriors from all over the country as we told the FDA and pharmaceutical companies that we needed better treatments. Traditionally, drugs for most conditions are developed using an oddly counterintuitive top-down approach with researchers and clinicians, often people who have never met patients or heard about their symptoms first hand. At the FDA Lupus Patient Focused Drug Development (PDFF) Meeting, FDA members, pharmaceutical company representatives came together for the first time in 56 years to try to participate in a different approach to medicine and treatment. As a lupus patient, I went into the PFDD Meeting assuming I’d be there to learn a thing or two about my disease. In fact, the good student that I am, I sat close to the front, laptop in hand, fingers poised, ready to record any and all knowledge that “those who knew about lupus” would provide me. I was ready to listen, to learn, to see what the latest developments were, and to hear what new treatment paths were being explored. Little did I know, I was one of the teachers at the meeting. At the end of her opening speech, Kathleen Arntsen, President of Lupus and Allied Diseases Association, asked all the “lupees, warriors, divas, princesses, princes, butterflies, and survivors" to stand up—and I looked around me, assuming that I would be one of a handful of patients in the room of 300 attendees. Instead, around me half the room rose in a quiet, dignified manner. Backs straight and bodies trembling, I could physically feel the strength and sadness that these lupus warriors brought, and it made me so incredibly proud to stand among this incredibly diverse group from all ethnic backgrounds, genders, age groups. I don’t think I’ve ever been so honored and humbled to stand with a group of people as I was that day—and the tears in the eyes of most of those around me showed me they felt the same. The audience participants—myself included—had ample opportunities to share with the FDA and pharmaceutical representations their experience with lupus symptoms and what symptoms they would like medications to target. The language and structure of the PFDD meeting fostered intellectual
A New Approach to Drug Development. LFNC is incredibly proud to share our involvement in the Lupus Patient Focused Drug Development (PFDD) meeting held in Maryland on September 25, 2017. A few LFNC patients took part in this meeting, including Robin George, the Peninsula Support Group Facilitator, and Sobia Saleem, the volunteer coordinator for the Lupus Buddy Program. Sobia attended via a patient scholarship provided by LFNC, made possible through your support. What is Patient Focused Drug Development (PFDD)? PFDD is a joint initiative by the Lupus Research Alliance, Lupus Foundation of America and the Lupus and Allied Diseases Association to give patients a central voice in the future of lupus drug development. The September 25 meeting featured over 100 patients and their represenatives who provided the Food and Drug Administration (FDA) with perspective from the patient community. A summary was shared with pharmaceutical developers, researchers and others working to produce treatments for lupus. More information is available at LupusPFDD.org.
I was honored to be invited as an audience participant in the Lupus Patient Focused Drug Development Meeting. It was a historical and groundbreaking meeting that was long overdue. I met people from across the country, of different ethnicities and stages of life. Each with a different story. Ten percent of them were men, and their lupus journey had often been very harsh. Two teens were panelists and both were facing kidney damage. One mom spoke of the difficulties of parenting a 10 year old with lupus and the feeling of helplessness seeing her daughter in so much pain that she couldn't dress herself or even brush her teeth. The opening address was touching and given by Kathleen A Arntsen, President of the Lupus and Allied Diseases Assoc, Inc. A long time lupus warrior herself. She stressed how invisible the disease is to others, both families, friends and even clinicians. This creates a challenge in taking us seriously when "we look so good." She encouraged us to remain strong and to advocate for others that were not present. Jane Woodcock, MD, Director of the Food and Drug Administration Center for Drug Evaluation and Research was interviewed. A Rheumatologist by training, shared FDA insights on the PFDD initiative and lupus. Attendees were asked about the most distressing symptoms of lupus and the overwhelming single most common complaint was fatigue. This interferes with quality of life, social relationships and career. Second was brain fog and cognitive difficulties. Next was depression due to functional changes, loss of hair, weight gain, ability to parent, and loss of one’s dreams and goals. It often leads to loneliness and isolation. Time often takes on a new direction in the prime of life and many feel they have lost opportunities and have a fear of tomorrow. The unpredictability of lupus has an impact on relations with family and friends and it makes it difficult to plan activities. Most expressed how their treatment had not only been a cost burden, but the side effects have taken a toll on their bones causing osteoporosis, hip replacements, cataract surgery, and the need to take additional medications. There is a tremendous need for safe treatments that avoid further organ damage and disability. Weighing the risk benefit between organ failure and early ovarian failure is unacceptable. Despite facing a multitude of physical, emotional and social challenges in our lives, there was a spirit of positivity and perseverance. We left the meeting feeling inspired and optimistic about our future. We are thankful the FDA heard our voices and our urgent plea for new treatments to improve our quality of lives. In the meantime, we spread the word and educate others. We fundraise for lupus research, but most importantly, we support each other! We are Lupus Warriors!
Positivity and Perseverance with an Invisible Disease | Robin George
and affective curiosity and was guided by genuine desire to improve the quality of patients’ lives. This was not only a beautiful experience for me to be a part of but an integrally necessary one for me, as a patient and LFNC representative, to speak up and advocate for better treatment for all of those who I support and love in my Northern California lupus community. I feel incredibly blessed and so grateful towards the donors to LFNC for making this a possibility for a lupus patient. While many, many of us want so badly to make a difference in the direction lupus treatment takes in the future, not all of us necessarily have the financial means to be make ourselves present at the table. Through the foresight of LFNC and the support of its donors, this time, the second time in our country’s history, I had the opportunity to sit and speak at the table and inform the direction that lupus treatment will take in the future—one in which the voices of patients, physicians, and pharmaceutical companies will come together.
Lupus 21st Century Joins LFNC: In 2017, LFNC took another step in bringing the benefits of groundbreaking research to our patients by partnering with Lupus 21st Century. Lupus 21st Century is an intra-American gathering of researchers and patients. This planning meeting took place at the Hayes Mansion in San Jose, California on September 16, 2017 - many LFNC patients took part in the daylong workshops. The day concluded with a special dinner and update from an internationally renowned group of lupus researchers. LFNC Board Member Roberta Kracht received the Lupus 21st Century Leadership Award for her many contributions to the lupus community.
LFNC has never given up on the notion that lupus is a curable disease. As we serve the needs of patients who live with it today, we continue to leverage our resources for research to find that cure. We do this through partnerships, advocacy and fundraising.
Research and Advocacy
LuCIN Begins Clinical Trials: In 2016, the Lupus Research Alliance launched the Lupus Clinical Investigators Network, (LuCIN) to accelerate the identification and development of new therapies for treating lupus. Comprised of leading lupus experts at academic research centers throughout North America, LuCIN provides a coordinated framework to test potential new treatments quickly and cost effectively, reflecting the highest scientific standards. Networks like LuCIN are the reasons LFNC's partnership with the LRA is so valuable. LuCIN has just announced its first five clinical trials. In partnership with Pfizer, the study VAlidation in LUpus of an Electronic Patient Reported Outcomes Tool (VALUE) is testing a smartphone app enabling lupus patients to report on symptoms in real time. In conjunction with Horizon Pharma Rayos Inhibits Fatigue in Lupus Erythematosus (RIFLE) will test the company’s prednisone RAYOS® on severe fatigue and morning stiffness. In collaboration with AMPEL BioSolutions and ImageAnalysis, the Dynamic Imaging to Assess Variation in Lupus Nephritis (DIVINE) study tests the potential for sophisticated MRI technology to assess lupus nephritis. The Lupus Research Alliance is collaborating with Celgene Corporation to study an oral drug CC-220 as a potential treatment for SLE. The Lupus Research Alliance in partnership with Merck/EMD Serono is collaborating to evaluate M2951, a novel inhibitor of Bruton’s Tyrosine Kinase (BTK) in lupus.
Pour for a Cure, An Amazing Contribution to Research: LFNC expanded our partnership with the Lupus Research Alliance (LRA) to host a special wine-tasting event. Held in Santa Rosa in September 2017, Pour for a Cure grossed $100,000, allowing LFNC to make our largest ever contribution to LRA's innovative lupus research efforts: over $33,000. An equal sum will support LFNC's patient-centric programs. LFNC is deeply saddened by the loss of lives and property in the recent wildfires in wine country. The families affected are in our thoughts. LFNC and LRA are are making a joint contribution to the Redwood Credit Union Fire Relief Fund in honor of our hosts and elixir partners.
LFNC firmly believes that patients must have the deciding voice in policy decisions that affect them. It's why we work hard to be your voice to policymakers. LFNC Urges Congress to Fund Lupus Research: On March 21, representatives from LFNC joined a broad coalition of lupus advocates to urge Congress on the following priorities: Provide $5 million for lupus research in the 2017 Defense Appropriations, and $2 billion increase for biomedical research in the budget for National Institutes of Health. We are happy to say that Congress approved both of these priorities later in the year. State Legislature Proclaimed Lupus Awareness Month: Both houses of the California legislature passed unanimous resolutions proclaiming May as Lupus Awareness Month on May 11. Local leadership shines in City Proclamations: Local volunteer leaders took ownership of guiding Lupus Awareness Proclamations through their cities. Here are the cities and municipalities that joined us: Hayward, Moraga, South San Francisco, Oakland, San Jose, San Francisco (Mayoral Proclamation) and Santa Clara. If you want to organize a proclamation in your home town, contact Erin at erin@lfnc.org in early 2018.
A poem by Kate Kalinowski, a Lupus Patient
Congressional Lupus Caucus. Thanks to LFNC's advocacy and the leadership of Congresswoman Zoe Lofgren of San Jose, the Congressional Lupus Caucus now counts eighteen members of the California Congressional Delegation from both parties. Find out if your member of Congress is a member of the Lupus Caucus by going to Facebook.com/CongressionalLupusCaucus. If not, we encourage you to contact them and urge them to join.
You wake me from the dead of sleep & trail my jawline to my toes. Sending a hot tingling sensation that burns my skin & aches my limbs & f*cks with my brain. Oh are you back? I say to myself, over & over - like a broken record. Of course you're back. you never leave. I'm stuck with you & you with me.
From Congress to City Hall: Putting Patients First
Health Care, Premiums and Cost Share: What is Going On?
Health Care Markets and Open Enrollment
2017 has been a year of turmoil in federal health care policy. Hightened uncertainly over the prospect of repeal of federal policy and the operations of the exchanges has created sharp disturbance in the market, and insurance companies have priced in the federal risk in their pricing for coverage in 2018. CSR Payments and Premiums: An Explainer The Affordable Care Act requires insurance companies to offer plans with reduced copays and deductibles (referred to as cost-sharing) to Americans who qualify and purchase plans through marketplaces set up under the ACA. Federal payments to insurers help them provide these Cost Sharing Reductions without having to raise premiums to compensate. After legislative failure of the effort to repeal the Affordable Care Act, President Trump ended these federal payments to insurers. What's the impact of ending CSR payments? In a nutshell, increased premiums. The reduced cost sharing is required under law regardless of federal payments. Further, insurers anticipated the move by the Trump administration and priced it into their premiums for 2018. That means that premiums increased more in 2018 for nearly everyone purchasing health insurance through marketplaces (and likely through their employers, as insurers tend to spread cost) than they would have if the CSR payments were still being made. Will my premiums go up? The law also requires premium subsidies for low and moderate income consumers to make insurance affordable. The increased premiums for these individuals would be covered by a corresponding increase in the subsidy, rather than come out of the pocket of a purchaser. This means that low and moderate-income individuals are largely inoculated from the higher premiums, but those with incomes above the subsidy threshold will pay the brunt of the price. Can they fix it? The Administration has argued that they can no longer make the CSR payments required by law because Congress has not specifically appropriated funds for those payments. A bipartisan compromise in the US Senate led by Sens. Lamar Alexander of Tennesee and Patty Murray of Washington would give Congressional authorization to these funds and restore CSR payments.
Health Reform Principles for People with Lupus Coverage should be made available regardless of pre-existing conditions. Health insurance system should provide low-income based government assistance. Protections against lifetime caps on health benefits must be continued. Core essential health benefits should form the basis for plans. Our health insurance system should prevent discriminatory benefit design. The health insurance system should work to eliminate racial disparities in chronic diseases, such as lupus, which disproportionately affects minorities.
The health insurance marketplace you use depends on the state you live in. Many states have elected to form their own exchanges while others have opted to let the federal government run their exchanges for them. California manages its own marketplace, known as Covered California. Eight in 10 participants in the marketplaces qualify for premium assistance, and most can find plans for less than $100 a month, according to the Department of Health and Human Services. Regardless of where you live, the level of premium assistance you may receive depends on your income.
If you live in the State of California Open Enrollment for 2018 Coverage: November 1, 2017 - January 31, 2018. Covered California is the state's central hub for individuals and families looking for affordable coverage. California is also one of 32 states that expanded Medicaid (Medi-Cal in the state) under the ACA. In all cases, Covered California can guide you through the enrollment process if you need coverage. Keep in mind that you cannot get coverage through Covered California or any other marketplace if you are eligible for or a recipient of Medicare. If you have the option of employer provided coverage that meets ACA standards, you may still purchase a plan through Covered CA or your state's marketplace, but you will not be eligible for premium subsidies or out-of-pocket cost reductions. The best way to get new coverage or renew your existing plan is to visit Coveredca.com. To apply by phone or for assistance applying, call 1-800-300-1506. Paper applications can be obtained on CoveredCA.com or by calling. Covered California's open enrollment period runs through January 31, 2018, a full month-and-a-half longer than the federal Healthcare.gov marketplace. Visit CoveredCa.com to explore your options and see if you qualify for income-based Medi-Cal or for financial assistance for a private plan. Call LFNC at 408-954-8600 if you need further assistance with your application. If you live outside California Healthcare.gov Open Enrollment for 2018 Coverage: November 1 - December 15, 2017. State of the exchanges: The following states, other than California, have their own exchanges: Colorado, Connecticut, District of Columbia, Idaho, Maryland, Massachusetts, Minnesota, New York, Rhode Island, Vermont, and Washington state. Five states operate their own marketplace and all related activities, but enrollment is done through the federal Healthcare.gov platform: Arkansas, Kentucky, Nevada, New Mexico, and Oregon. The states of Delaware, Illinois, Iowa, Michigan, New Hampshire and West Virginia conduct their own plan management but rely on the federal platform for most functions. All other states rely completely on the federal Healthcare.gov marketplace. State of Medicaid: Under the ACA, those eligible for expanded income-based Medicaid coverage are not eligible for premium subsidies in the marketplace. Some states, however, have elected not to expand Medicaid, creating a coverage gap for those who would otherwise be eligble. The following states have expanded Medicaid: Arkansas, Arizona, California, Colorado, Connecticut, Delaware, District of Columbia, Hawaii, Illinois, Indiana, Iowa, Kentucky, Louisiana, Maryland, Massachusetts, Micigan, Minnesota, Montana, Nevada, New Hampshire, New Jersey, New Mexico, New York, North Dakota, Ohio, Oregon, Pennsylvania, Rhode Island, Vermont, Washington, and West Virginia.
How Do I Get Coverage for 2018?
Auburn/Grass Valley Support Group Janet Patten | (530) 889-8575 Hanford Lupus Support Group Tenika Avila | (559) 415-5678 Hayward Lupus Support Group Jane Tiphayachan | (510) 759-7560 Marin County Support Group Marilyn Wedner | (415) 383-1924 Mid-Peninsula Lupus Support Group Robin George | (650)596-0626 Red Bluff Lupus and Fibromyalgia Support Group Jackie Kitchell | (530) 529-3029 Redding/Shasta Lupus Support Group Bobi Stalioraitis | (530) 921-5569 Sacramento Lupus Support Group Shauntay L. Davis | (916) 893-9554 San Francisco Lupus Support Group Evanne Grate | (415) 452-4270 San Jose Area "Hangout" Support Group Sandra Espinoza | (408) 954-8600 Santa Barbara Lupus Support Group Joyce Hulsebos | (805)687-3124 Santa Maria Lupus and Rheumatic Diseases Support Group Pam Gross | (805) 448-9420 Stockton Lupus Support Group Manuel Martinez | (209) 403-9748 In addition, phone support is available in these areas: Kern County: Marney Moesta | (661) 805-0293 Salinas/Monterey: Margo Lopez | (831) 758-9002 Sonoma County: Kerry Mertle | (707) 537-0358
LFNC Support Groups and Leaders
Non-Profit Org. US Postage PAID San Jose, CA Permit No. 5515
Lupus Foundation of Northern California 2635 North First Street, Suite 211 San Jose, CA 95134
For the most current information, please visit LFNC.org.
