Advocacy & Awareness for Immune Disorders Association (AAIDA)

Webinars

World Bronchiectasis Day Webinar

July 1, 2023

AAIDA is excited to parter with Global Allergy and Airways Patient Platform (GAAPP) for this special educational webinar on the 2nd annual, World Bronchiectasis Day! Our speakers from around the globe include Lauren Dunlap, PACS, Ashok Gupta, MD, and Ghulam Mustafa, MD. 

Lauren, Dr. Gupta and Dr. Mustafa will discuss the following:

  • World-view perspectives from both allergy/immunology and pulmonology specialist in diagnosis, epidemiology, therapeutic endpoints and advancements in treatment for non-cf bronchiectasis
  • Overlapping conditions often associated with non-cf bronchiectasis (immune deficiencies, infections, etc)
  • Disease management and lifestyle factors involved from a patient perspective when choosing treatment options and stigmas often associated with diagnosis

 

Dr. Ashok Gupta is a practicing pediatrician at SMS Medical College in Jaipur India and Chairman for the Rare Diseases Division and Pediatrics. Dr Gupta is also Chairman of Allergy Care India and current board member of the Global Allergy & Airways Patient Platform (GAAPP).

Prof. Dr. Ghulam Mustafa is a clinician (Head of the clinical medicine department, College of Medicine, Shaqra University, Consultant Pediatrician, Pediatric Pulmonologist), a Researcher (over 85 publications with an Impact factor of 1700 and over 28000 citations), a Community Health Worker (CEO of Helping Hands Foundation & Chairman of the Institute of Mother & Child Care), a Writer (national newspapers), a Presenter (national radio/TV channel), an Organizer (national/international conferences & symposia) and an Academician (Convener Pediatric Pulmonary Group of the Pakistan Pediatric Association & Coordinator Pediatric Lung Association, Convenor Pediatric Asthma Advisory Group Pediatric Cough Advisory Board).

In addition to being a Founding member (2003) & CEO of Helping Hands Foundation (HHF), a not-for-profit organization dedicated to providing health, education, and community empowerment, through culturally sensitive adventures, Dr. Mustafa is also Chairman of the Institute for Child Lung Health. The HHF is involved in Health Management & Awareness Program for Schools (Health-MAPS), Program for Asthma Screening in Schools (PASS) {free spirometry for schools}, Coordinated Access To Child Health CATCH), an advocacy program for parents, Initiative for Mother Milk Awareness in Newborns (IMMAN), Child Protection Against Labor And Neglect (Child PALAN) & Hand Wash And Save Health (Hand WASH) programs.

Lauren Dunlap is Executive Director and Co-Founder for Advocacy & Awareness for Immune Disorders Association (AAIDA) in Charlotte N.C. As an individual living with non-cf bronchiectasis, Lauren spends much of her time advocating for patients by spending time with lawmakers on Capitol Hill during specific Advocacy Days to voice patient concerns around access to medications and treatments, healthcare reform and other important topics in the healthcare community. Lauren has over 13 year’s experience in educating patients living with immune disorders and overlapping conditions. She has been a go-to resource for healthcare providers for many years by offering valuable insights and education regarding barriers to patient care, treatment and outcomes. To expand her advocacy efforts, Lauren become a board-certified Prior Authorization Certified Specialist (PACS) with the Accreditation Council of Medical Affairs in 2020. She felt this was vital to help patients navigate the prior authorization process that are often required in conjunction with expensive medications and treatments

Following their presentation Lauren, Dr. Gupta and Dr. Mustafa will conduct a live 15 minute Q&A session with attendees. 

This presentation is sponsored in partnership with Monaghan Medical and Zambon Group.

Mysteries Of The Brain: Demystifying Autoimmune Neurological Conditions (Part I of II)

May 24th, 2023

AAIDA hosted speciality pharmacists, Alexis El-Khouri, PharmD, and Kipp Tiger, PharmD, CSP, for our fourth webinar of 2023.

Dr. El-Khouri and Dr. Tiger will discuss the following:

  • Describe autoimmune demyelinating disorders and the impact on patients and caregivers 
  • Review current guideline recommended therapies and what to expect while on therapy 
  • Discuss pipeline drugs and clinical trial studies 
  • Introduce resources and support programs for patients and caregivers
Alexis El-Khouri, PharmD, is completing a PGY1 residency at Trellis Rx Specialty Pharmacy in Akron Ohio. She earned her Doctor of Pharmacy degree at Northeast Ohio Medical University (NEOMED). During pharmacy school she co-founded the first NEOMED student chapter of the National Association of Specialty Pharmacy where she collaborated with multiple National organizations including: The National Multiple Sclerosis Society, The Alzheimer’s Association, The Lupus Foundation, and Advocacy and Awareness for Immune Disorders Association (AAIDA). In April of 2021, she had the opportunity to present a webinar for AAIDA titled “Multiple Sclerosis & Specialty Pharmacies: An Overview of Care & Treatment”. Alexis is passionate about exploring the latest developments and evidence-based practices in neurology and autoimmune conditions to provide the highest level of patient care. She has presented her neurology outcomes research at multiple national conferences including the National Association of Specialty Pharmacy, the American Society of Health-Systems Pharmacy, and will also be presenting at the Centers for Multiple Sclerosis Consortium conference this May. A fun fact about Alexis is that she someday hopes to open a cat café called Kittea Cafe where you can snuggle up to some adorable kitties and drink delicious gourmet teas.
 

Kipp Tiger PharmD, CSP, is a practicing clinical pharmacist at Summa Health Specialty Pharmacy (Trellis RX) in Akron Ohio where he specializes in neurology and neuroscience services. Kipp earned his doctorate in pharmacy from Lake Erie College of Osteopathic Medicine (LECOM) and began his pharmacy career at Walgreens. His emphasis on medication therapy management (MTMs) and medication advocacy in the community setting led to being recognized as the regional “Champion of Champions” for customer service. In 2018, Kipp began his focus on specialty medications, primarily in the fields of endocrinology, cardiology and neurology and in 2020, Kipp became the lead neurology pharmacist for the launch of Summa Health Systems Neuroscience and Neurosurgery department. Since then, Kipp has been integral in the advancement of services for treating neurologic disease states including multiple sclerosis, migraine, epilepsy, myasthenia gravis, amyotrophic lateral sclerosis, CIDP and many others. Kipp’s passion for patient advocacy and care is only matched by his passion for his family and Cleveland sports teams.

Following their presentation Dr. El-Khouri and Dr. Tiger will conduct a live 15 minute Q&A session with attendees.  

Biosimilars 101: What They Are & What They Mean To You

April 26, 2023

For our third webinar this year, AAIDA’s will host our own Medical Advisory Board Chair and speciality pharmacist, Michael Rigas, PharmD. 

Dr. Rigas will discuss the following:

  • Understand the difference between biosimilar drugs vs generic drugs
  • Learn what the FDA’s impact on biosimilars was intended to be vs the reality in 2023
  • Explaining how to work with your doctor, insurance company and pharmacist to optimize biosimilar treatment outcomes
  • How to minimize out of pocket costs when biosimilars are prescribed and available patient financial assistant programs for biosimilar products

Dr. Rigas is retired Chief Clinical Officer, co-founder and principal at a national infusion company dedicated to patients living with chronic conditions. Prior to this, Dr. Rigas was Associate Chief Innovation Officer for Pharmaceutical Care for Geisinger Health System and Chief Clinical Officer for VITALine CareSite Pharmacy Services. Dr. Rigas graduated from USC School of Pharmacy with his Pharm.D. degree and completed his residency at UC San Francisco Hospitals and Clinics in 1982. His areas of expertise include antimicrobial therapy, immunoglobulin therapies (IVIG), nutritional support, inotropic therapies and many others.

Dr. Rigas has worked on standardized coding for infusion billing, universal access via patient assistance plans and managing Medicare Part D issues in front of the California board of pharmacy and CMS regional managers. Dr. Rigas is a member of the American Society of Hospital Pharmacists, the National Home Infusion association, the American Academy of Neurology and the Clinical Immunology Society.

Following his presentation, Dr. Rigas will conduct a live 15 minute Q&A session with attendees.

Elevating Awareness Of Rare Diseases; The Past, Present & Future

March 2nd, 2023

AAIDA hosted Simu Thomas, Ph.D, of Alexion Pharmaceuticals and Shelby Harrington, RN, of Avalere, for our 2nd educational webinar during Rare Disease Week, 2023. 

Simu and Shelby will discuss the following:

  • Advancements in healthcare systems with patient-centric ways to evaluate health technology and outcomes
  • New approaches to address total indirect burden of a disease for patients, such as productivity loss, family and caregiver impacts, and the severity of disease states
  • Discuss new findings from a report with patient-focused methods to determine the value of health technology for rare disease patients

Shelby Harrington, RN, is Principal at Avalere who began her career at Carolinas HealthCare System (now Atrium Health) as a staff nurse in orthopedics and trauma care in Charlotte, N.C. Shelby now supports clients in navigating the transition to value-based care with a focus on clinical quality, strategy, and digital transformation. Recently, Shelby has helped life sciences manufacturers develop value-based care strategies to characterize patient-centric outcomes linked with their products (e.g., improved mental health, relationships, and employment, and ability to work and parent), particularly for rare and chronic diseases. Shelby has also served as senior product director for quality and regulatory technology at Premier, Inc., overseeing hospital regulatory products, provider registries and value analytics products.  Shelby holds a bachelor’s degree in public policy analysis from the University of North Carolina at Chapel Hill and bachelor’s and master’s degrees in nursing from Virginia Commonwealth University.

Simu Thomas, Ph.D., is Vice President of Global Head Health Economics & Outcomes Research for Alexion Pharmaceuticals, AstraZeneca Rare Disease. Prior to joining Alexion, Simu was the Global Head of Value & Access for Rare Diseases at Novartis, Global Head for the Cell & Gene Therapy Unit, where he developed the Value Access strategy for rare diseases and the first CART therapy approved in the world. He was also the founding architect of the IMI HARMONY data initiative.  Simu ran the Economic Modeling organization at Novartis and has authored more than 35 manuscripts and 75 congress presentations and co-authored book chapters in the field of Health Economics. Simu holds a PhD in Pharmaceutical Economics from the University of Maryland and MS in Pharmacy Administration from the University of Toledo and Pharmacy degrees. Simu also serves as Adjunct Assistant Professor at University of Maryland and Rutgers University of New Jersey.

Following their presentation Shelby and Simu will conduct a live 15 minute Q & A session with attendees. This webinar will be recorded live and made available on the AAIDA website and YouTube channel in the following days.

This presentation was sponsored in partnership with Alexion Pharmaceuticals.

Born Into The Climate Crisis: The Effects Of Climate Change On Children

January 25th, 2023

Kicking off our next webinar series for 2023 will be AAIDA’s own Executive Medical Director, Jennifer Caicedo, MD, FACAAI, FAAP.

Dr. Caicedo will discuss the following:

  • The impact of climate change on children’s health and potential health implications associated with them
  • Identifying ways you can help to improve your child’s health outcome with the current evolving climate crisis
  • Latest research on climate change with asthma patients and treatment options available
  • Impact of air pollution exposure on specific organ systems and high risk populations

Jennifer Caicedo, MD, FACAAI, FAAP, is a practicing allergist/immunologist in Charlotte, N.C, at Carolina Asthma & Allergy Center. Dr. Caicedo is a Fellow of both the American College of Allergy Asthma & Immunology (ACAAI) and the American Academy of Pediatrics (AAP). Dr. Caicedo is Past President of the Charlotte Pediatric Society, where she still serves on the organization’s Board. She is also a Past President of the North Carolina Allergy Asthma & Immunology Society.  

Dr. Caicedo has been involved in multiple clinical research studies in food allergy, atopic dermatitis, eosinophilic esophagitis, and asthma as well as multiple national quality improvement studies.  Dr. Caicedo believes strongly in advocacy and has been actively involved in both her local and national medical communities. Dr. Caciedo was proud to assist in the efforts to obtain funding for one registered nurse for every local public Charlotte Mecklenburg School (CMS) as well as implementing stock epinephrine throughout CMS.