Meeting new IAPO member: Lupus and Allied Diseases Association
We welcome Lupus and Allied Diseases Association, to IAPO. To help the rest of the network get to know them, they have answered a few questions about the interesting work they do, why they are involved in patient advocacy and their thoughts and expectations as they join IAPO.
Why are you involved in the work that you do / why does your organization exist?
Lupus and Allied Diseases Association, Inc., (LADA) is an all-volunteer non-profit organization dedicated to enhancing the quality of life for those impacted by lupus and allied diseases and other conditions of unmet needs by fostering collaboration among stakeholders, promoting unity in the community, and wielding the patient voice as a catalyst to advance innovative advocacy, education, awareness and biomedical research initiatives.
Like many others, lupus cut me down in the prime of my life, stealing my hopes, dreams and aspirations of having a career, financial security or being a Mother. My advocacy journey began with a connection to the local Lupus Foundation for education and support but became a way to overcome the losses in my life and give something back. Every position I had held helped to prepare me to be an activist, it is my destiny to be an advocate and it will be my legacy when I am gone. Being an advocate can fill a void left by disease; for me it has brought my life full circle, repeatedly bringing me back to state capitols or inside the beltway to influence policies in an attempt to make a positive difference in the world.
What are the main challenges facing organizations within your area of work?
Promoting disease awareness and raising funds to support programs are always a challenge since there are so many other patient advocacy organizations and disease groups out there vying for awareness and funding.
Lupus is difficult to diagnose and a challenge to live with and treat. There is no single test to diagnose lupus and many autoimmune conditions so diagnosis is based on numerous medical appointments and lab results, a process of elimination, extreme patience, and open to clinical interpretation.
Due to the complex, heterogeneous nature of lupus, no two cases are alike and treatment is highly individualized. It has been difficult to get new drugs to treat people with lupus due its unpredictability, lack of biomarkers, clinical trial endpoints and outcome measures, uniform control group, and existence of concomitant medications—usually immunosuppressives. There are only 4 drugs currently approved for lupus so many drugs being used are immune-compromising like transplant drugs or borrowed from other diseases such as cancer. These drugs ablate the entire immune system and cause detrimental side effects with long term use. Therefore, our entire community desperately awaits the arrival of safer, more effective treatments and better diagnostic tests.
Why did you join IAPO?
Joining IAPO allows us to be part of a global organization devoted to giving people impacted by diseases an international voice. As a member, we are provided a unique opportunity to unite with other patient advocacy organizations worldwide to build alliances, network, share resources and work collaboratively to promote patient-centered healthcare throughout the world.
As a passion-driven, patient-focused charity led by individuals with lupus and allied diseases and their loved ones, who strives to promote patient-centered care, patient-engaged research and empowerment programs that encourage people to become more proactive in their medical care, we believe that by sharing programs and resources with other IAPO members we can advance patient-centricity. Early diagnosis and treatment are vital components in reducing the physical and economic impact of chronic disease, therefore global awareness and education programs are critical to achieving this goal.
We believe that by collectively increasing awareness and focusing public attention on diseases and issues that impact all of us, while working together to overcome challenges and ensuring the patient voice is present and heard throughout the healthcare, public policy and regulatory arenas and across the research continuum— we will improve the quality of life for patients worldwide.
What does patient-centered healthcare mean to you?
Patient-centered healthcare means putting the needs of patients first and considering their input as an equal stakeholder at the table in the healthcare, research and policy arenas. The patient voice is more relevant now than ever before, especially with the passage of the 21st Century Cures Act and the Patient-Focused Drug Development (PFDD) at the Food and Drug Administration (FDA) in the United States.
Patient-centered healthcare also includes supporting strong patient safeguards and preserving the doctor-patient relationship to ensure the patient receives the most appropriate treatment at the right time in their disease journey. By establishing essential patient protections that improve access and affordability to vital therapies; in turn reducing the emotional, physical and economic impact of disease will improve outcomes and allow individuals to lead more productive lives. Physicians are educated and ethically bound to treat to the uniqueness of an individual and should be allowed to do so to achieve optimal results.
We all have the right to work with our healthcare providers and be part of our treatment team. This includes making informed decisions about the medicines we take and advocating for ourselves by asking questions and speaking up. All healthcare providers should welcome patient participation.
What should the priorities be for the global patient movement over the next couple of years?
We believe that the priorities for the global patient movement should be: sharing valuable resources with each other, adopting consistent messaging and terminology, continued promotion of patient-centric care, making patient safety a primary concern, establishing patient-focused drug development worldwide, all while collaborating to enhance each other’s initiatives.
We also need to support innovative research initiatives that include cross-sector collaborations, multi-center and public-private partnerships and robust basic, clinical and translational projects that will enable scientists to investigate disease pathogenesis and physiology, identify biomarkers, design better clinical trial methodologies, prevent complications, develop precise diagnostic measures and safer, more effective treatments, and ultimately eradicate devastating diseases. It is imperative that the next generation of patients are given the chance at a better quality of life and the opportunity to pursue their dreams.
Are there any plans and events this year or resources from your organization that you would like to share with the IAPO network?
We understand the isolation and fear people often feel when they are first diagnosed with any condition and recognize the impact disease can have on other family members, loved ones, and care partners. We promote various community education programs designed to empower people to become more proactive in their own medical care and to become engaged in the public policy process. We continue to promote our “Enhancing Lives by Empowering the Lupus Community” Education Symposium, which provides resources to people living with lupus and other autoimmune diseases and their loved ones about Clinical Research Trials and Participation, Patient Empowerment, an Overview of Biological Drugs, Infusions, Treatment Access Challenges, and Tools for Survival when Dealing with Chronic Disease, with our last symposium happening in Denver, Colorado on October 5, 2019.
We also coordinate an annual Lupus Awareness Month event in the New York State Capitol each May to promote disease awareness and program funding and are recognized in the Senate and Assembly Chambers. This has allowed us to get legislative support to pass critical lupus program and access to care legislation that became laws.
Please visit our website www.LADAinc.org to learn more about our programs and resources and check out our Links to Resources, Prescription Resources, and Clinical Trial Participation pages.