Advocacy In Action
The Lupus and Allied Diseases Association (LADA) supports initiatives that address barriers to healthcare access in order to ensure individuals receive the most appropriate therapies as directed by their treating healthcare professionals and consistent disease management is preserved.
We strongly support establishing essential patient protections that improve access to vital therapies; in turn reducing the emotional, physical and economic impact of disease, improving outcomes, and allowing individuals to lead more productive lives.
We are actively engaged in advocacy efforts at both the federal and state levels to ensure that the patient voice is present and heard including joining national and state coalitions, submitting comments, and supporting group sign-on letters. We confront healthcare access issues as they arise, often taking the lead to organize efforts; boldly inserting ourselves into the regulatory, legislative, and research communities when necessary to guarantee the patient stakeholder is included at the table.
Lupus Community Advocacy Victory
Thank you to the Lupus Foundation of America for sharing the following advocacy update. We are honored to advocate for these programs each year and appreciate the efforts of the many lupus warriors and loved ones from across the nation who join in.
We are thrilled to share that on March 15, 2022, President Donald Joseph Biden signed into law a fiscal 2022 spending package that includes $20 million in new funding specifically for lupus research and education programs. The package also includes $45 billion for biomedical research through the National Institutes of Health (NIH).
The omnibus spending package includes funding for important lupus programs that include:
$9.5 million for the National Lupus Patient Registry at the Centers for Disease Control and Prevention (CDC), bringing total funding for the program to more than $91 million since its creation in 2003;
$10 million for the Lupus Research Program at the Department of Defense (DOD), the third consecutive year of $10 million after the program received $5 million in each of its first three years, bringing total funding for lupus research at the DOD to over $66 million;
$64.8 million for the Office of Minority Health (OMH), which includes the National Lupus Training, Outreach, and Clinical Trial Education Program, and language directing OMH to continue programs that aim to increase minority participation in lupus clinical trials;
$45 billion for the National Institutes of Health, an increase of $2.5 billion over fiscal year 2021 for the largest public funder of lupus research in the world.
We give credit and thanks to The Lupus Foundation of America and the many advocates who were instrumental in establishing the National Lupus Patient Registry at the CDC, and to Congress for continuing to recognize the program’s critical role in learning more about lupus and the millions of Americans affected by the disease.
In addition, the Lupus Research Program at the DoD will now have committed over $66 million to lupus research since its establishment by Congress in 2017. The Lupus Research Program funds high-impact research to identify the causes of lupus and accelerate the discovery of additional treatments for the disease.
We are excited to share that Dr. Maria I. Kontaridis and her research team at the Masonic Medical Research Institute (MMRI) in Utica, NY received a $750,000 lupus research grant from the DOD Lupus Research Program on April 2, 2021. Not only did LADA fund lupus research previously from 1990 to 2000 at the MMRI, but we participated in the initial DOD Lupus Research Program Meeting in 2017 in Washington, DC and have provided patient consumer reviewers to participate in the review process each year.
The Lupus and Allied Diseases Association is proud to have advocated for all of these programs since their inception and we extend sincere appreciation to the countless lupus warriors from across the nation who made their voices heard by contacting their lawmakers. We also recognize and thank both the Lupus Foundation of America and the Lupus Research Alliance for their lupus advocacy initiatives.
Fiscal Year 2022 (FY22) funding opportunities for the Department of Defense (DoD) Lupus Research Program (LRP) managed by the office of Congressionally Directed Medical Research Programs (CDMRP) are now available.
Lupus Research Program (LRP)
Transformative Vision Award
Detailed descriptions of funding opportunities, evaluation criteria, and submission requirements can be found in the specific Program Announcements. The Program Announcements are available electronically for downloading from the Grants.gov website (http://www.grants.gov), the CDMRP website (https://cdmrp.army.mil/funding/prgdefault) and the electronic Biomedical Research Application Portal (eBRAP) (https://eBRAP.org).
In addition, we extend gratitude to Congress for supporting these vital programs and commend the Congressional Lupus Caucus Co-Chairs Rep. William Keating (D-MA), Rep. Peter King (R-NY), and Rep. Eddie Bernice Johnson (D-TX), House Appropriations Champions Nita Lowey (D-NY) and Kay Granger (R-TX) and Senate Appropriations Champions Richard Shelby (R-AL) and Patrick Leahy (D-VT) for their leadership in advancing these efforts.
Make Your Voices Heard Program
We are continuing our Make Your Voices Heard Program since it has been well received by all stakeholders in the community. This initiative is designed to educate and empower additional individuals with lupus and autoimmune diseases and their loved ones to learn how to effectively raise their voices to advocate on state and federal healthcare access, research, regulatory and public policy issues that impact their lives. This program focuses on the importance of becoming actively engaged in the advocacy process to influence positive change through participation.
One of our goals is to educate and empower patient advocates to learn about the regulatory process and witness advisory committee meetings in person in order to gain a better understanding of the drug and device development process.
LADA would like to recognize our sponsors for their generous support of this ongoing initiative.
Lupus and Autoimmune Warrior
Lisabeth Iglesias, lupus and autoimmune warrior and LADA Board Member, is featured in American Autoimmune Related Diseases Association's (AARDA) Autoimmune Awareness Month Campaign this March. LADA is a member of the National Coalition of Autoimmune Patient Groups (NCAPG) and was invited to partner with AARDA on the campaign this year to promote autoimmune disease awareness.
A Path to Lupus Advocacy
Brian Vogel’s lupus journey started in the summer of 2008 when at the age of 17 he began experiencing severe joint pain, swelling, and extreme fatigue. The pain was so excruciating he was unable to even get out bed. He and his family were determined to achieve a diagnosis, traveling as far as NYU Langone Medical Center to get a second opinion. The next two years consisted of countless doctor visits, one misdiagnosis, numerous blood tests, and various medications, some of which worked but all of which had side effects. He was finally diagnosed with Systemic Lupus Erythematous in 2011 by a rheumatologist.
Despite his deteriorating health, Brian attended Clarkson University in the fall of 2008, but his lupus flared and he was forced to return home and attend community college for 18 months. Still determined, he returned to Clarkson University in the Fall of 2010 and earned his B.S. degree by the Spring of 2013, majoring in biology and minoring in chemistry. He overcame many complications associated with his lupus, some of which include Idiopathic Thrombocytopenia (or low platelet count), kidney disease, Raynaud’s phenomenon, alopecia, and skin rashes. Neurologically, lupus has affected his mental health as well and he continues to deal with brain fog, depression, and anxiety.
In the summer of 2017, Brian and his Mother, Lori contacted Lupus and Allied Diseases Association and were connected to President & CEO Kathleen Arntsen who listened to his story and helped them to understand lupus better. She also shared resources and invited them to volunteer at the Lupus Charity Golf Classic in August. Brian met other people with lupus at the event and decided that he wanted to get more involved.
In the spring of 2018, Brian and Lori attended the Annual Lupus Awareness Event in Albany, NY at the state capitol as a constituent of LADA. They were able to meet many people with lupus and their loved ones from across the state and share experiences with them. They also shared their story and experiences with various legislators in the New York Senate and Assembly. This was the first time Brian felt that he was able to really express how lupus had affected him and his family. He shared that this was an amazing experience because he felt validated by witnessing how his story resonated with others. Brian and Lori also participated in LADA’s Lupus Education Symposium in Syracuse, NY where he learned about the importance of self advocacy, carepartnering, and clinical trials from experts in the field.
Since then Brian and Lori have continued to attend the Albany Awareness Event, volunteer at the Golf Classic (Brian even has his own team and plays), attend a Lupus Gala in New York City, and in April 2020 they both became LADA Board Members. Brian enjoys being an advocate and part of the solution and is grateful to LADA for welcoming him and his family into the lupus community.
Lupus has affected every aspect of Brian’s life and he feels that it has been a difficult learning experience. It has tested his limits and he has had to learn what works for his body and what does not. He continues to take ten pills daily and self-administer an injection for his lupus every week. He credits the endless support from his incredible family, for helping him to be where he is today by fighting to get him a diagnosis and the best treatment team. He doesn’t know where he would be without them and feels very blessed. We feel very thankful to have Brian and Lori and their wonderful family in the LADA family.
Pictured above left is Brian Vogel (center) receiving his 2019 Golf Classic Sponsor plaque from LADA President Kathleen Arntsen along with his wonderful family and support system, Grandparents Ron and Sue Durgan, friend Scott Marra, and Parents Lori and Joe Vogel. Pictured above right are LADA Advocates Anne Zablotowicz, Lisabeth Iglesias, and Brian Vogel receiving the 2019 NYS Lupus Awareness Resolution from Senator Joseph Griffo along with LADA Advocates Dave Arntsen and Lori Vogel at the New York State Capitol Building in May 2019.
Ground Breaking Lupus Initiative
The Lupus and Allied Diseases Association, the Lupus Foundation of America, and the Lupus Research Alliance collaborated on a Lupus Patient-Focused Drug Development (PFDD) Initiative holding the Lupus: Patient Voices Meeting on September 25, 2017. This ground breaking endeavor culminated in a day-long meeting that featured a series of facilitated panel and audience discussions designed to provide the Food and Drug Administration (FDA) and other stakeholders with perspectives from people with lupus.
The Lupus: Patient Voices Report, a comprehensive report composed as a result of the externally-led Lupus Patient-Focused Drug Development (PFDD) Meeting and pre-meeting survey, was released on March 6th. More than 2,100 people with lupus and their representatives contributed information to this report, sharing insights on living with lupus and their experiences with treatments. This report is a major milestone for the lupus community and will be shared directly with the U.S. Food and Drug Administration (FDA) to help advance treatments for lupus. The Lupus: Patient Voices Report and the Lupus PFDD Meeting are the result of a collaboration by the three national lupus organizations and is a parallel effort to the U.S. Food and Drug Administration’s (FDA) Patient-Focused Drug Development Initiative.
2021 NY State Advocacy Victories
We are thrilled to share that both S04111 / A04668 limiting non-medical switching practices was signed into law by Governor Kathy Hochul in December after being passed by the NY State Senate and Assembly in June after years of advocacy efforts by LADA and other patient and professional organizations.
We thank the many patient advocates and organizations who supported these important access to care initiatives for making their voices heard in person, by telephone and e-mail and through social media. We also commend the New York state legislature and the bill sponsors for putting New Yorkers first before profits.
S04111 sponsored by Senator Neil Breslin and A04668 sponsored by Assemblywoman Crystal Peoples-Stokes is an act to amend the insurance law in relation to prescription drug formulary changes during a contract year which would limit non-medical switching practices. Non-medical or formulary-driven switching is a policy designed by commercial insurance companies and pharmacy benefit managers to limit prescription drug coverage to less expensive medications, resulting in New Yorkers being required to use a different medication than the one initially prescribed or forcing them off their current effective treatments when they are stable. The NY state legislation establishes consumer safeguards to ensure that New Yorkers have access to lifesaving and life-enhancing therapies through consistent coverage, stable formularies, and fair out-of-pocket costs. Bill Memo
NY State Step Therapy Regulation
The New York State Step Therapy Reform Bill was signed into law on December 31, 2016 by Governor Andrew Cuomo. We thank the nearly 80 patient advocacy and provider organizations, the NYS Legislature, and the bill sponsors Senator Catharine Young and Assemblyman Matthew Titone for their tremendous support and efforts for nearly seven years. We applaud Governor Cuomo for standing with us by providing strong safeguards that will ensure proper access to treatments for patients when appropriate.
Links to help with questions during the implementation of the law for insurers, consumers and providers are below.
December Press Release
FAQ Guidance for Health Insurers on Law
Q & A on Law
Physician Form Requesting Review
The Step Therapy / First Fail Legislation introduced by Senator Catharine Young (S 3419-C) and Assemblyman Matthew Titone (A 2834-D) passed unanimously in both the Senate and Assembly in June 2016. This bill regulates Step Therapy protocol and provides a clear and concise override process for health care providers to follow. The bill was signed into law On December 31, 2016 by Governor Cuomo. We appreciate the support of the many patient advocacy and professional organizations who advocated tirelessly to get these bills passed.
Click Here for the bill text
The Power of Advocacy
Kathleen Arntsen, President and CEO of Lupus and Allied Diseases Association, participated in a video project to promote the power of advocacy. The overview listed her as "a powerful national patient advocate from New York living with multiple autoimmune diseases, including lupus. She joins with other patient advocates to make their voices heard in vital patient safety policy discussions."
Kathleen also participated in the 2015-16 Lupus Research Alliance Patient Advocacy Program by sharing her perspectives.
A link to the video interview is below.