Episodios

  • EP 99 - AiArthritis Diseases and Protecting Against COVID-19 in Healthcare Settings

    EP 99 - AiArthritis Diseases and Protecting Against COVID-19 in Healthcare Settings
    Jul 7 2024
    In this episode, co-hosts Charis Hill and Jae Walker delve into life after COVID-19, focusing on the unique challenges faced by individuals with AiArthritis diseases. They discuss the importance of continued precautions in healthcare settings, share their own personal experiences, and offer practical advice for staying safe. Tune in for an insightful conversation on navigating the ongoing reality of COVID-19 while managing chronic illnesses. Episode Highlights Understanding the ongoing complexities of COVID-19 for immunocompromised individuals and those on immune-suppressing medications.Jae and Charis share their journey living with chronic disease, their experience with COVID-19 and managing COVID prevention now.Discussion on recent public health recommendations and the importance of wearing masks, social distancing, and testing.Addressing the need for safe healthcare environments and advocating for better protections for high-risk patients.Encouraging listeners to resume mask-wearing, improve air quality, and initiate conversations with healthcare providers about safety measures. Join us for this episode to gain valuable insights and actionable steps to protect yourself and others in the AiArthritis community. Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp Donate to Support the Show: https://www.aiarthritis.org/donate Follow AiArthritis on all social media platforms @IFAiArthritis Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE Resources & Links: Jae’s blog - When I Had Co-Vid: https://creakyjoints.org/living-with-arthritis/coronavirus/patient-perspectives/when-i-had-covid/ COVID Keeps Rising in Bay Area Wastewater. What to Know, From New Variants to Symptoms: https://www.kqed.org/news/11987343/covid-bay-area-wastewater-variant-symptoms-isolation-guidance CDC “People with certain medical conditions” page: https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-medical-conditions.html CDC page “How to protect yourself and others” https://www.cdc.gov/coronavirus/2019-ncov/prevent-getting-sick/prevention.html People’s CDC resource page for requesting COVID healthcare reasonable accommodations: https://peoplescdc.org/2023/05/09/ada-rights-workshop/ Connect with our Co-Hosts: Charis Hill, who uses they/them pronouns, is a disability activist, writer, speaker, and model living with conditions such as Axial Spondyloarthritis and Ehlers Danlos Syndrome. They use narrative engagement to advance social justice for multiply-marginalized disabled people and have been featured internationally in media and the documentary "Becoming Incurable." Charis has written for HealthCentral, Healthline, and Business Insider, and has been recognized by the Arthritis Foundation and Spondylitis Association of America for their advocacy work. Connect with Charis: Twitter: @beingcharisblog Tikok : @beingcharisblogFacebook: @beingcharis Jae Walker, who uses they/them pronouns, is a disabled artist with multiple autoimmune diseases such as Rheumatoid Arthritis, Reynaud’s Syndrome, Asthma, Mast Cell Activation Syndrome, Small Fiber Neuropathy and more. They express their issues with chronic pain, fatigue, brain fog, loneliness, disconnect, etc by blogging and creating art for Creaky Joints. They have also exhibited artwork in New York and Michigan, as well as spoken out on the patient experience at conferences such as Medicine X. Advocacy about treating patients with compassion and humanity is a driving force behind everything they do. Connect with Jae: Threads: @JaelehWalker Instagram : @UnexpectedAdvocateFacebook: @UnexpectedAdvocate AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
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    55 m
  • Episode 98 - Mental Health with AiArthritis Diseases

    Episode 98 - Mental Health with AiArthritis Diseases
    Jun 2 2024

    In this episode, our co-hosts Estela and Juana delve deep into the often overlooked but critically important topic of mental health for those living with AiArthritis diseases. They discuss the significant impact these health challenges have on both the body and the mind, supported by eye-opening statistics that 52% of patients with autoimmune diseases are diagnosed with a mental health condition within a year. Tune in to hear Estela and Juana break down the science behind these connections, share their personal experiences and provide practical strategies to manage mental health while navigating life with AiArthritis diseases.

    Episode Highlights:

    • Defining AiArthritis diseases and their comprehensive impact on mental health
    • Discussion on the challenges of living with unpredictable flares
    • Juana's personal experience with rheumatoid arthritis and lupus and their impact on her mental health
    • Importance of self-care strategies such as rest, nutrition, exercise, and mindfulness techniques.
    • Benefits of therapy, counseling, and connecting with social support groups.

    Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp

    Donate to Support the Show: https://www.aiarthritis.org/donate

    Follow AiArthritis on all social media platforms @IFAiArthritis

    Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE

    Connect with our Co-Hosts:

    Estela is the President and co-founder of Looms for Lupus, a nonprofit providing advocacy and support for those affected by Lupus, Fibromyalgia, and mental health issues. With over 30 years in healthcare, she currently supports private practices with electronic medical records and office workflows. Estela co-founded Looms for Lupus in 2011 after her sister's near-fatal battle with Lupus and Immune Thrombocytopenia, channeling her passion into empowering and supporting the community. She collaborates with initiatives to increase diversity in clinical trials and advocates both locally and nationally.

    Connect with Estela:

    Facebook:@estelamata @looms4lupus

    Instagram: @estela_mata @looms4lupus

    Twitter: @estelamata @looms4lupus

    LinkedIn: @Estela Mata-Carcamo

    Website: www.looms4lupus.org

    Juana is the co-founder of Looms for Lupus, a nonprofit supporting Lupus survivors, their families, and caregivers. Diagnosed with Rheumatoid Arthritis and Lupus in 2009, she facilitates bilingual support groups and advocates nationally for Lupus, Fibromyalgia, and Mental Health. Juana has served as a patient advisor, consumer advocate, and is a member of several advisory councils and task forces. Professionally, she is a Children's Social Worker for the Los Angeles Department of Children and Family Services.

    Connect with Juana:

    Facebook: Juana Mata

    Instagram: @juany_mata

    Twitter: @Matajuanamata

    LinkedIn: Juana Mata

    AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!

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    47 m
  • Episode 97 - World AiArthritis Day

    Episode 97 - World AiArthritis Day
    May 5 2024

    In this episode, Leila shares the exciting plans for the upcoming World AiArthritis Day on May 20th with AiArthritis. Delve into why raising awareness for AiArthritis diseases is crucial and discover ways you can actively participate on the global initiative. Through flashback segments, our co-hosts dissect the layers surrounding the term "arthritis," unraveling misunderstandings, family judgments, and the complexities of distinguishing AiArthritis from other conditions. Tune in for insightful discussions on diagnosis delays, access to treatments, fostering better health outcomes and how you can be a part of World AiArthritis Day!

    Episode Highlights:

    • AiArthritis plans for World AiArthritis Day on May 20th
    • How listeners can actively engage in the global initiative
    • Common Misunderstandings of Arthritis
    • Significance of raising awareness for AiArthritis diseases and the complexities of distinguishing AiArthritis from other conditions.
    • Patient insights into diagnosis delays and the effects on treatment plans.

    Interested in getting involved?

    https://www.aiarthritis.org/aiarthritisday

    https://twitter.com/aiarthritisday

    https://www.instagram.com/worldaiarthritisday

    https://www.facebook.com/AiArthritisDay

    Fundraiser: https://givebutter.com/AiArthritisWAiAD24

    Race-a-Thon: https://www.facebook.com/events/1511735302713694/

    Donate to Support the Show: https://www.aiarthritis.org/donate

    Follow AiArthritis on all social media platforms @IFAiArthritis

    Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE

    Connect with our Co-Hosts:

    • Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren’s Disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them. Leila is on social media as @Lupus.Lifestyle.Lei sharing bits and pieces about her life with lupus and connecting with others. Connect with her on Instagram or TikTok.

    Connect with Leila:

    Instagram: @lupus.lifestyle.lei

    TikTok: @lupus.lifestyle.lei

    AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!

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    34 m
  • Episode 96 - Social Wellness with an AiArthritis disease

    Episode 96 - Social Wellness with an AiArthritis disease
    Apr 7 2024

    In this episode, co-hosts Leila, Estela, and Kerry delve into the crucial topic of social wellness amidst living with AiArthritis disease. They explore the essence of social wellness, its significance and sharing personal insights on navigating social lives while managing health challenges. Join our co-hosts as they discuss both the supportive and challenging dynamics of maintaining an active social life with an AiArthritis disease and how online communities can positively impact social wellness. Drawing from community questions and experiences, they offer invaluable advice, practical tips, and thoughtful modifications to foster social fulfillment despite potential barriers. Tune in to learn how to prioritize social wellness in the face of chronic illness.

    Episode Highlights:

    • Definition and exploration of social wellness, emphasizing its importance in maintaining overall well-being.
    • How social wellness can negatively and positively affect your AiArthritis disease
    • Discussion on the cohosts' personal experiences with their social lives and how they navigate social interactions while managing their health conditions.
    • Insights into the reactions of family and friends to the cohosts' social needs, highlighting both supportive and challenging aspects.
    • How you can utilize technology to connect to your community to positively impact your social life.
    • Answering community questions and comments regarding social wellness by sharing practical advice, tips, and modifications for fostering social fulfillment despite potential barriers.

    Donate to Support the Show: https://www.aiarthritis.org/donate

    Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE

    Connect with our Co-Hosts:

    • Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren’s Disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them. Leila is on social media as @Lupus.Lifestyle.Lei sharing bits and pieces about her life with lupus and connecting with others. Connect with her on Instagram or TikTok.

    Connect with Leila:

    Instagram: @lupus.lifestyle.lei

    TikTok: @lupus.lifestyle.lei

    • Kerry is a writer and patient advocate living with fibromyalgia, rheumatoid arthritis, sarcoidosis, Sjögren's syndrome, and small fiber neuropathy/dysautonomia (to name a few). As these conditions took their toll and she became less physically able, Kerry became empowered to use her voice to advocate for herself and for patients like her. She is currently working on "Kaleidoscope," a collection of rare disease stories.

    Connect with Kerry:

    Instagram: @buttahflyk

    Twitter: @buttahflyk

    Facebook: @floatlikeabuttahfly

    Website: http://bit.ly/floatlikeabuttahfly

    • Estela Mata is the President and co-founder of Looms for Lupus, a non-profit organization that provides Lupus, Fibromyalgia and Mental Health Awareness, advocacy, and support to those living with these conditions, their loved ones, and caregivers.

    Connect with Estela:

    Instagram: @estela_mata @looms4lupus

    LinkedIn: @Estela Mata-Carcamo

    AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!

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    1 h y 1 m
  • Episode 95 - Volunteering with AiArthritis

    Episode 95 - Volunteering with AiArthritis
    Mar 3 2024

    Curious about how volunteering with AiArthritis could transform your life and the lives of others?

    In the latest episode of AiArthritis Voices 360 Talk Show as co-hosts Leila, Michael, Jenni, Deeanne, Patrice, and Deb share heartfelt stories of their journey into volunteering with AiArthritis. From personal experiences to the profound impact AiArthritis has had on their lives as patients, they delve into the transformative power of community support. Discover why volunteering is vital and how the AiArthritis community has become a lifeline, offering understanding, empathy, and empowerment.

    Join the conversation and learn how you too can make a difference by getting involved with AiArthritis. Find out more here: https://www.aiarthritis.org/volunteer

    Episode Highlights:

    • Dive into the intriguing stories behind our volunteers' journey to AiArthritis.
    • Hear how AiArthritis has reshaped lives and inspired resilience in our volunteers.
    • Explore why volunteering is the key to driving progress for the AiArthritis organization and community.
    • Discover the profound support and empowerment found within the AiArthritis community.
    • Learn how you can make a difference and get involved with AiArthritis today.

    Donate to Support the Show: https://www.aiarthritis.org/donate

    Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE

    Connect with our Co-Hosts:

    • Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren’s Disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them. Leila is on social media as @Lupus.Lifestyle.Lei sharing bits and pieces about her life with lupus and connecting with others. Connect with her on Instagram or TikTok.

    Connect with Leila:

    Instagram: @lupus.lifestyle.lei

    TikTok: @lupus.lifestyle.lei

    • Jen

    Connect with Jen:

    Podcast : My Spoonie Sisters

    Instagram: @gracejully_jen

    @my_spoonie_sisters

    AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!

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    49 m
  • Episode 94 Rheumy Rounds Rewind: Improving Doctor and Patient Communication During Office Visits

    Episode 94 Rheumy Rounds Rewind: Improving Doctor and Patient Communication During Office Visits
    Feb 4 2024
    This is an AiArthritis Voices 360 REWIND, where we are bringing back the first RheumyRound episode from 2020 where we opened the conversation on improving doctor office visits! Also note - you will hear the acronym IFAA, which we used prior to using AiArthritis. Join us as our co-hosts, Tiffany and Kelly, and guests, Dr. Kim and Jerik Leung, explore the important dynamic between patients and doctors in healthcare communication. Through insightful dialogue and shared experiences from both the patient and physician perspective, we uncover strategies to enhance mutual understanding, empowering patients to articulate their needs and doctors to listen attentively. Together, we champion the importance of empathy and effective communication in achieving accurate diagnoses and personalized treatment plans for those navigating AiArthritis diseases. Episode Highlights: Do patients and rheumatologists' goals and expectations during an office visit align? The significance of effective patient-doctor communication in managing AiArthritis diseasesStrategies for patients to articulate their concerns and needs during office visitsTechniques for doctors to actively listen and engage with patients to improve diagnostic accuracyShared experiences and insights from both patients and doctors on navigating communication challengesHow doctors can integrate social determinants of a patient's health in the clinical setting Related Episodes: RheumyRounds: PART ONE The Good, The Bad, and The Ugly - Improving Office Visit Communication: https://www.aiarthritis.org/talkshow-ep80 RheumyRounds: PART TWO The Good, The Bad, & The Ugly - Improving Office Visit Communication : https://www.aiarthritis.org/talkshow-ep81 Donate to Support the Show: https://www.aiarthritis.org/donate Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE Meet Our Host: Tiffany is the CEO at AiArthritis (International Foundation for Autoimmune & Autoinflammatory Arthritis) and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues. Connect with Tiffany: Facebook: @tiffanyAiArthritisTwitter: @TiffWRobertsonLinkedIn: @TiffanyWestrichRobertson Kelly Conway is a speech-language pathologist, author/blogger, and a patient advocate. She has been living with autoimmune arthritis since age 14 but wasn’t formally diagnosed until age 32. That diagnosis has changed more than 5 times over the past 18 years. Through social media, she connected with fellow patients and cofounded the International Foundation for Autoimmune and Autoinflammatory arthritis. Kelly believes in the power of the patient voice and sharing our stories to raise awareness, education, and advocacy. Connect with Kelly: Blog: www.asmyjointsturn.com. Meet our Guests: Dr. Kim is an Assistant Professor of Medicine and of Pathology & Immunology at Washington University School of Medicine. He also founded and directs the Washington University Lupus Clinic. Dr. Kim’s research group is focused on addressing the unmet needs of human systemic lupus erythematosus (SLE), including understanding and leveraging the biomarker potential of complement activation products, testing novel noninvasive imaging platforms such as photo acoustics to detect lupus nephritis, understanding the relationship between sleep quality and lupus activity, and restoring eroded social support in patients with SLE. Connect with Dr. Al Kim Instagram: @washulupusclinic Twitter : @AlHKim Jerik Leung doctoral student and Woodruff Fellow in the Behavioral, Social, and Health Education Sciences department at Emory University. His current research interests involve characterizing pathways linking structural social determinants of health with individual health outcomes in chronic disease. He is specifically interested in how structural factors shape how people living with chronic disease manage their conditions, interact with their health care providers, access care, and engage with their communities. Jerik is currently working with faculty advisor Dr. Cam Escoffery to evaluate the implementation of several epilepsy self-management programs. For his dissertation research, he intends to focus on issues relevant to people living with lupus. AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
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    36 m
  • Episode 93: Reproductive Health and AiArthritis Diseases

    Episode 93: Reproductive Health and AiArthritis Diseases
    Jan 7 2024

    Welcome to AiArthritis Voices 360! In this episode, Leila, the Health Education Manager at AiArthritis, delves into the impact of AiArthritis diseases on reproductive health, sharing insights from the RNS and ACR 2023 conferences. Leila delves into the myriad challenges individuals encounter, including delayed puberty, heightened disease activity during menstrual cycles, and the heightened risks associated with unplanned pregnancies. Navigating the intricate landscape of family planning within the AiArthritis community, we discuss the significance of birth control methods and the impact of medications on fertility.

    Drawing from personal experience with lupus, Leila discusses preserving fertility, assisted reproductive technologies, and navigating family planning. Join us on this episode to learn more about reproductive health with AiArthritis diseases and hear Leila’s personal experience with family planning!

    If you have questions or would like to share your own family planning story, please feel free to email Leila at Leila@AiArthritis.org.

    Episode Highlights:

    • Explore the latest research insights on how AiArthritis diseases affect reproduction from the RNS and ACR 2023 conferences.
    • Join Leila on a personal journey, navigating reproductive health with Lupus.
    • Uncover challenges in family planning, from medication impacts to the significance of birth control in AiArthritis.
    • Learn about medication effects on fertility and preservation strategies for those with AiArthritis.

    Resources & Links:

    • https://mothertobaby.org/
    • http://lupuspregnancy.org/
    • https://www.mamasfacingforward.com/
    • https://www.graceandable.com/pages/chilliredcompressionglove
    • RNS Go With Us video about Lupus and Pregnancy: https://youtu.be/tgeIW0pxF8M?feature=shared
    • ACR Go With Us video about Reproductive Health: https://youtu.be/rYGs1fevQWU?feature=shared

    • Related Episodes:
    • Ep 11: Oh Mama! Pregnancy Planning with a Chronic Illness : https://www.aiarthritis.org/talkshow-ep11
    • Ep 51: Oh Mama! Physical and Emotional Support Postpartum : https://www.aiarthritis.org/talkshow-ep51
    • Ep 89: Surgery with an AiArthritis Disease : https://www.aiarthritis.org/talkshow-ep89

    Meet Our Host:

    • Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren’s Syndrome. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them. Leila is on social media as @LupusLifestyle.Lei sharing bits and pieces about her life with lupus and connecting with others. Connect with her on Instagram or TikTok.

    Connect with Leila:

    Instagram: @lupus.lifestyle.lei

    LinkedIn: www.linkedin.com/in/leila-lagandaon

    Facebook: @leilaaiarthritis

    TikTok: @lupus.lifestyle.lei

    Donate to Support the Show: https://www.aiarthritis.org/donate

    Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE

    AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!

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    38 m
  • #360it: Medicare Drug Price Negotiation: How Will it Affect Patient Access?

    #360it: Medicare Drug Price Negotiation: How Will it Affect Patient Access?
    Jan 5 2024
    This episode is a 360it revisiting the topics put on the table during Episode 88 : Biosimilars - Interchangeability & Switching 2023 Join us in this breakout 360it from Episode 88 Biosimilars : Interchangeability & Switching 2023 as we dissect the Inflation Reduction Act (IRA) and its potential fallout on patient access to diverse treatment plans. Tracing the historical trajectory of the IRA, we uncover its role in price negotiations and the concerning shift in investments away from critical drugs tailored for specific diseases. This reallocation poses a tangible threat to the availability and diversity of treatments, including for those living with AiArthritis diseases. As we dive into the landscape of healthcare policy, the discussion emphasizes the pressing need for IRA improvements to consider the long term well-being of patients. Without these crucial enhancements, we will have a future with not only fewer innovative treatments but potentially less treatment options available. Join us in fighting for improvements to the IRA and patient involvement in treatment access. Episode Highlights : The history of Medicare Part D and its positive impact on healthcareWhat is the Inflation Reduction ActWhy the IRA price negotiations are important to understand and how it will affect your treatment access How healthcare R&D will be negatively impacted by the IRA price negotiations Consequences to Patients of Drug Price-Setting Policies for patientsHow can patients get involved in the IRA price negotiations How the IRA will disincentivize small molecule drugs and indications for treatment plans Resources Mentioned In This Episode: AiArthritis Biosimilars Hotline: https://www.aiarthritis.org/biosimilars EMA - What Is A Biosimilar : https://www.ema.europa.eu/en/human-regulatory/overview/biosimilar-medicines-overviewASBM Statement on CMS drugs list announcement - https://safebiologics.org/medicare-price-negotiations-will-jeopardize-patient-access-to-new-medicines-result-in-worse-health-outcomes/ASBM webinar on IRA - https://safebiologics.org/july-26-webinar-on-ira-medicare-price-negotiations/An educational microsite for patients to learn more and read news articles - www.IRAPatientInfo.org Meet Our Co-Hosts & Guests: Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues. Connect with Tiffany: Facebook: @tiffanyAiArthritisTwitter: @TiffWRobertsonLinkedIn: @TiffanyWestrichRobertson Andrew Spiegel has nearly two decades of experience in the patient advocacy arena. Spiegel co-founded the Colorectal Cancer Alliance and was longtime board member of the Alliance became CEO in January of 2008 and ran the CCA for nearly 5 years, before undertaking his next venture, the Global Colon Cancer Association (GCCA).In addition to his work in the colon cancer community, Spiegel is an active advocate for health care policies both in the US and now worldwide. He is a co-founder and currently serves on the steering committee of the Alliance for Safe Biologic Medicines (ASBM). He is on the Board of Directors, and in December 2014 was elected to Chair, of the Digestive Disease National Coalition (DDNC),a founding member of the Coalition to Increase Clinical Trial Participation and in May of 2016 he began a three year term as a member of the Board of Directors of the International Alliance of Patient Organizations (IAPO) where he chaired the fundraising committee. Spiegel has won multiple awards for his work in patient advocacy. Michael Reilly, Executive Director of Alliance for Safe Biologic Medicines, has served as the executive director of ASBM since its inception in 2010. He has more than a decade of experience in the federal government developing and implementing healthcare policy. Mr. Reilly served as the associate deputy secretary at the U.S. Department of Health and Human Services (HHS) from 2005-2008 responsible for policy development and implementation, as well as regulatory oversight for issues involving CMS and the FDA. In addition to serving as the associate deputy secretary, Mr. Reilly served as a senior advisor to the assistant secretary for public affairs and the assistant secretary for planning and evaluation at HHS from 2002-2005. Mr. Reilly has been quoted in a series of FDA publications and co-authored many articles on biosimilars for the Generics and Biosimilars Initiative Journal. He has also presented to health regulators worldwide, including the Australian TGA, Health Canada and the World Health Organization (WHO). Charles M Clapton. Mr Clapton has nearly two decades of Capitol Hill experience, Notably, he served as health policy director for the Senate Committee on Health, Education, Labor, and Pensions, aiding the passage of the FDA Safety and Innovation Act (2012). He ...
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    1 h y 3 m