patient advocacy

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In this episode, host Marc Russell interviews guest Jared from DollarFor.org. They discuss the little-known option of charity care, a provision in the Affordable Care Act that allows nonprofit hospitals to waive or reduce medical bills for eligible individuals.

Jared explains how their organization helps patients navigate the complex process and advocates for them to have their medical debt eliminated.

Timestamps:
[07:18] Jared's story
[09:35] Charity Care
[13:05] Figuring out if you're eligible
[16:45] Why aren't hospitals sharing this
[19:35] Taxes on money forgiven
[21:47] Dollar For process

Connect with Jared:
Website: DollarFor.Org
Instagram

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Cheryl C. and Cheryl K. share key tools for thriving with arthritis, like finding ways to ask for help, developing health literacy, practicing self-compassion, and getting support. They also discuss the safety of modern medicine and how to balance it with complementary therapies to create an individualized plan for managing rheumatoid arthritis. 

 Additionally, they delve into the mental health techniques that have helped them cope, including: reframing exercises, and working past bias. Cheryl K. shared how she used her experiences to form Arthritis Consumer Experts, a patient-led and science-based organization with the goal of providing better education to people with arthritis.

Episode at a glance:

• Navigating chronic illness when the internet was just starting: Cheryl Koehn had an athletic background, but when symptoms struck she went to the library to do her own research and advocated for herself despite medical gaslighting.
• Trialing treatment options: Cheryl K. initially denied Western Medicine before she ended up with 36 active swollen joints within a year and progressively worsening quality of life. Following this, she received gold injections and other conventional DMARDs initially, adding in Methotrexate and later transitioning to newer medications like biologics as they became available.
• Coping with peer pressure: People trying to convince her that “natural is better” and to avoid medications, however natural isn’t inherently better at controlling disease and newer medications are backed by research. Cheryl C. and Cheryl K. discuss how a balance of complementary therapies and medication help people safely manage their conditions. Koen practices reframing exercises, works on explicit and implicit bias, and considers “what can I learn from this person today” with an open mind.
• Wisdom for newly diagnosed patients: Find ways to ask for help! Develop health literacy as a tool for advocating for yourself and to guide decision making.
• What does it mean to thrive with rheumatic disease: Practice self-love and self-compassion, love what you do, and give yourself room to breathe.
• Arthritis Consumer Experts (ACE): Cheryl K. used her experiences of running her own consulting firm, volunteering, and being on the board at the Arthritis Society to form this organization. Her goal is to provide better education to people with arthritis, and to not be the only person with arthritis with a say in arthritis organizations.

Medical disclaimer:

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. 

See all the details and join the program or waitlist now!

For Full Episode Details Including Transcript:

Go to the Arthritis Life website

Listen as Vanila Singh, MD, MACM, speaks with Maggie Buckley, a woman with Ehlers-Danlos syndrome and chronic pain, about her experience with pain therapies and different healthcare professionals over the years. They have an enlightening discussion about the challenges both patients and healthcare professionals face in optimizing pain management, with a poignant conversation about how stigma plays a role in pain medicine. They close by offering advice to fellow healthcare professionals and patients on how to approach pain management from both perspectives.

Presenters:

Vanila Singh, MD, MACM
Clinical Associate Professor
Department of Anesthesiology, Peri-operative, and Pain Medicine
Stanford School of Medicine
Palo Alto, California
Chairperson, Former Chief Medical Officer
HHS Pain Management Pain Task Force
US Department of Health and Human Services

Maggie Buckley

This activity is supported by an independent educational grant from the Opioid Analgesic REMS Program Companies. Please see
https://bit.ly/3mgrfb9 
for a listing of REMS Program Companies. This activity is intended to be fully compliant with the Opioid Analgesic REMS education requirements issued by the FDA.

Provided by Clinical Care Options, LLC and in partnership with the American Academy of Physical Medicine and Rehabilitation, Alliance to Advance Comprehensive Integrative Pain Management, Practicing Clinicians Exchange, and ProCE.

Link to full program:
https://bit.ly/3mcDHsi

In this episode, Stephane De Wit, MD, PhD, discusses the benefits of long-acting antiretroviral therapy (ART) for migrant populations in Europe—and specifically in Belgium. He also addresses some of the challenges of accessing and following up with those populations.

Dr De Wit describes some of the ways that the Belgian healthcare system is set up to improve access to ART. He then explains some of the disease parameters for considering expanding the use of long-acting ART to patients who are not virologically suppressed. Finally, Dr De Wit offers some thoughts about the future of long-acting ART to migrant populations in Belgium.

Stephane De Wit, MD, PhD
Former Head
Infectious Diseases
Saint Pierre University Hospital
Brussels, Belgium

See the full program at:
https://bit.ly/3HIMAoF

In this episode, Winnie Sseruma and Linda-Gail Bekker, MBChB, DTM&H, DCH, FCP(SA), PhD, discuss some of the barriers to genuinely patient-centered HIV care in Africa and offer calls to action for healthcare professionals for responding to patient preferences.

They discuss the efforts to improve patient-centered HIV care in the foundations and organizations for which they work. They also address issues related to stigma around HIV and complacency and lack of visibility for HIV.

You will then hear them talk through differentiated service delivery in South Africa and Mozambique as models for other parts of Africa. They focus on HIV prevention and some of the difficulties of reaching certain populations to better communicate effective prevention practices.

They end with a discussion about the importance of documenting the experiences and stories of people living with HIV.

Winnie Sseruma
International Development Consultant 
London, United Kingdom

Linda-Gail Bekker, MBChB, DTM&H, DCH, FCP(SA), PhD
Director
Desmond Tutu HIV Centre
Past President
International AIDS Society
Faculty of Health Sciences
University of Cape Town
Cape Town, South Africa

Link to full program:
https://bit.ly/3Fxsfkz

Grief is cumulative, and it's cumulatively negative. Every loss we experience stacks on top of those before it. For Genesis Amaris Kemp, attending funerals started becoming a regular occurrence. Add the loss of loved ones before the Covid pandemic (and during) to the loss of a job during the same timeframe, and it can be challenging to find solid footing. Additionally, learning, for the first time, how to advocate for a parent in the healthcare system posed its challenges during this same period.

Genesis's father walked into a hospital with elevated blood sugar. Three days later, he was paralyzed from the waist down, which was later identified to have occurred from a stroke. Additionally, he endured several other complications during his hospital stay that later caused a quick decline in health and, soon after, his death. 

Trying to be a caregiver during Covid proved to show the disparity and gaps in the healthcare system. In addition to the losses she endured during the pandemic, she also was laid off from her corporate job in oil and gas. Genesis shares her experience of being a young black woman in a predominantly older white demographic of employment, describing that experience and sharing how one conversation with the company VP, and the experience as a whole, was empowering, heartbreaking, and eye-opening all at the same time.

The Covid Pandemic showed us where we have a lot of work and repair to do within the healthcare system and how we live and work as a society. Genesis shares the lessons she learned during this timeframe and how she's become impassioned in serving others with what she's learned.

RESOURCES:

• GEMS Podcast
• GEMS Podcast Episode with Victoria 
• Book

CONNECT:

• Website
• Instagram

_______

NEED HELP?

• National Suicide Prevention Lifeline: 1-800-273-8255
• Crisis Text Line provides free, 24/7 support via text message. Text HOME to 741741 to connect with a trained Crisis Counselor

If you are struggling with grief due to any of the 40+ losses, free resources are available HERE.

Are you enjoying the podcast? Check out my bi-weekly newsletter, The Unleashed Letters.

CONNECT WITH VICTORIA: 

• Instagram
• Website
• LinkedIn

This episode is sponsored by Do Grief Differently™️, my twelve-week, one-on-one, in-person/online program for grievers who have suffered any type of loss to feel better. Click here to learn new tools, grief education, and the only evidence-based method for moving beyond the pain of grief.

Would you like to join the mission of Grieving Voices in normalizing grief and supporting hurting hearts everywhere? Become a supporter of the show HERE.

In this episode, Iskandar Azwa, MBChB, and patient advocate Andrew Tan Tze Tho discuss barriers to genuinely patient-centered HIV care in Malaysia and the surrounding region and offer calls to action for healthcare professionals for responding to patient preferences.

They discuss health literacy programs and other forms of effective health communication, especially with respect to disparate communities. They also address the prevalence of late presentation in Malaysia and the importance of getting people tested and into care earlier.

They then discuss the urgency of rapid initiation of antiretroviral therapy, discrepancies in access to health services, and stigma and discrimination.

Finally, they discuss the issues preventing newer antiretrovirals from being more readily available to people in the region; the importance of maintaining and refining patient-focused, differentiated care in the face of such disparities; and the role of advocates and healthcare professionals in helping to drive those improvements. 

Iskandar Azwa, MBChB
Associate Professor
Infectious Diseases, Faculty of Medicine
University of Malaya
Kuala Lumpur, Malaysia

Andrew Tan Tze Tho
President
Kuala Lumpur AIDS Support Services Society (KLASS)
Kuala Lumpur, Malaysia

Link to full program:
https://bit.ly/3Fxsfkz

This episode is part of a larger discussion that comes from “Partnering With Patients: Overcoming Barriers to HBV Care in Asian Communities in the US.” Hear from Thuan Vu, MD, as he discusses linkage to care after HBV diagnosis in Asian communities from a provider’s perspective. And listen to discussions with Jennifer Wild, MSN, BSN, RN, OCN, and Melinda Tran as they consider his story from a patient advocacy point of view.

Topics include barriers to linkage to care like social stigma, lack of insurance coverage, financial support, and a lack of physicians who speak the patient’s native language. 

Link to full program:
https://bit.ly/3Gf7NWo

This episode is part of a larger discussion that comes from “Partnering With Patients: Overcoming Barriers to HBV Care in Asian Communities in the US.” First, Melinda Tran discusses treatment and retention of HBV care in Asian Communities in the US with Jennifer Wild, MS, BSN, RN, OCN, and Thuan Vu, MD. Their conversation offers an interesting mix of insights from the point of view of patient advocates and healthcare providers.

Topics include barriers to treatment—like a lack of insurance coverage and financial support, complexities in treatment guidelines, psychosocial factors—and addressing practical solutions to these barriers.

Link to full program
http://bit.ly/3Gf7NWo

Patient advocate Bright Ansah shares some issues he encountered while seeking treatment after his diagnosis with HBV, including limited follow-up on lab results and a lack of compassion from his healthcare providers, and rushed health appointments.

Bright’s story opens up a conversation about broader concerns about HBV treatment and retention in care with Janet Afoakwah and William Amiteye, fellow patient advocates on the panel, and Patricia D. Jones, MD, MSCR, who offers a healthcare provider’s perspective. They also discuss practical solutions to those barriers, including ways to establish trust with the patient, emphasizing active listening and compassionate care during appointments, and collaborating with patients on their options and next steps.

Link to full program:
http://bit.ly/3Gf7NWo

Listen as patient advocate William Amiteye uses his own experience as a Tanzanian immigrant to discuss important barriers to effective HBV screening and diagnosis, including limited knowledge about HBV from his healthcare providers, a lack of compassion toward his diagnosis from those same providers, and a limited awareness of HBV from patients in general.

His story opens up an interesting and important discussion with another patient advocate on the panel, Janet Afoakwah, and Patricia D. Jones, MD, MSCR, who provides a provider’s perspective on the topic.

Link to full program:
http://bit.ly/3Gf7NWo

 According to Johns Hopkins, 240,000 medical error deaths occur every year. Betsy learned that when it comes to the healthcare system and being a caregiver, becoming informed and a fierce advocate is the only option.

Betsy learned real-life experience about medical advocacy while her husband survived prostate cancer, only to be diagnosed with bone marrow cancer five years later. Four years after his bone marrow cancer diagnosis, he passed away.

Within six months of his passing, she went against the advice generally given to widows not to make any big decisions the first year and sold her home and moved. But her move wasn't to start over or escape; rather, she was moving toward support and people who knew her. In her words, she moved to where her "colonoscopy friends" were.

Once she was surrounded by everything familiar, the loss of her husband hit hard, and she sought weekly support from a grief therapist. Through that support, she navigated the devastating loss of her husband, Jack.

What followed was a strong desire to write a book that could offer support to other caregivers navigating the healthcare system. Through her writing, she shares with others the lessons she learned, caregiver tips, and practical advice for becoming the best advocate you can be for your loved one.

Not everyone is assertive or forward in their approach to situations. And Betsy learned that southern charm and politeness don't move others to action. She has made it her mission to help others find their own inner bulldog. Because, when it comes to those you love, or yourself, there will never be anyone who cares more than you.

RESOURCES:

• Book | The Patient Advocacy Handbook: Empowering You to Boldly Navigate the Healthcare System
• The Grief Recovery Institute Grief Index Study
• Empathy App | The Cost of Dying Report

CONNECT:

• Website
• LinkedIn

________

NEED HELP?

• National Suicide Prevention Lifeline: 1-800-273-8255
• Crisis Text Line provides free, 24/7 support via text message. Text HOME to 741741 to connect with a trained Crisis Counselor

If you are struggling with grief due to any of the 40+ losses, free resources are available HERE.

Are you enjoying the podcast? Check out my bi-weekly newsletter, The Unleashed Letters.

CONNECT WITH VICTORIA: 

• Instagram
• Website

This episode is sponsored by Do Grief Differently™️, my twelve-week, one-on-one, in-person/online program for grievers who have suffered any type of loss to feel better. Click here to learn new tools, grief education, and the only evidence-based method for moving beyond the pain of grief.

Would you like to join the mission of Grieving Voices in normalizing grief and supporting hurting hearts everywhere? Become a supporter of the show HERE.

In this episode, Marc Thompson and Tristan J. Barber, MA, MD, FRCP, discuss some of the barriers to genuinely patient-centered HIV care in the United Kingdom and offer calls to action for healthcare professionals for responding to patient preferences. They discuss barriers to HIV testing and effectively communicating the benefits of testing to disparate communities. They also talk through the difficulties in maintaining patient engagement in HIV care and the value of using peer support workers in HIV clinics. You will then hear Marc and Dr Barber talk through treatment and prevention practices. They focus on the importance of messaging around U=U: that treatment can make a patient’s HIV undetectable, and therefore their HIV is untransmissible. They end with a discussion about changing treatment paradigms and how to keep patients informed and empowered—not overwhelmed—by those changes to help ensure lasting health outcomes.

Marc Thompson
Director, The Love Tank
Co-founder, Prepster
London, United Kingdom

Tristan J. Barber, MA, MD, FRCP
Honorary Associate Professor
Institute for Global Health
University College London
Consultant in HIV Medicine
Ian Charleson Day Centre
Royal Free Hospital
London, United Kingdom 

Link to full program:
https://www.clinicaloptions.com/hiv/programs/2022/what-pts-want-hiv

In this episode, Deondre Moore and Samantha V. Hill, MD, MPH, discuss some of the barriers to genuinely patient-centered HIV care in the United States and offer calls to action for healthcare professionals for responding to patient preferences. They talk through some of the barriers that patients face, from struggling with unfamiliar medical terminology, to healthcare professional biases, to more structural problems like housing and food scarcity. They also discuss strategies that healthcare professionals can incorporate to provide more comprehensive, inclusive, collaborative HIV care. 

Samantha V. Hill, MD, MPH
Assistant Professor
Division of Adolescent Medicine
Department of Pediatrics
The University of Alabama at Birmingham
Birmingham, Alabama

Deondre Moore
U.S. Partnerships and Community Engagement Manager
Prevention Access Campaign
Houston, Texas

Link to full program:
https://bit.ly/3fsWuij

In this episode, Ayesha and the editorial team spoke with prominent cystic fibrosis and rare disease patient leader Gunnar Esiason to learn more about his advocacy work, including his work in clinical trials and developing patient-facing technologies. Gunnar has consulted on clinical trial development, a real-world evidence population health study and a cystic fibrosis-specific mental health and wellness screening tool. He has been the face of fundraising efforts for the Boomer Esiason Foundation, which has raised more than $160 million for the fight against cystic fibrosis since he was diagnosed with the condition in 1993. He also has a successful blog and has co-hosted and hosted podcasts, with his most recent one called The State of Health with Gunnar Esiason, which has featured sitting US senators, governors and health industry leaders. Hear more about Gunnar’s work and his passion for patient advocacy and improving rare disease clinical research in this episode of the Xtalks Life Science podcast.

For more life science and medical device content, visit the Xtalks Vitals homepage.

Follow Us on Social Media

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Rapid Access Clinics or.RACs for low back pain are designed to support not replace a chiropractor's care. They provide patients, who qualify for the program with a timely consultation on their low back condition and related symptoms to support their self-management. In this episode, we speak with Dr. Henry Candelaria, who has been involved in Ontario's RACs since 2012. Tune in to hear Dr. Candelaria discuss why RACs matter to you, your patients, and our health ecosystem. He outlines the rewards, challenges, and what to expect from the RAC for low back pain (RAC-LBP)'s clinical roles for chiropractors. He also explains how you can advocate for your patients who may benefit from the RAC-LBP and use a new tool to help facilitate their referral. 

Topics Covered:

• Purpose of the Rapid Access Clinics (RACs)
• Dr. Candelaria's involvement with the RACs
• Types of RACs
• Design of RACs and role of hospitals
• Difference between RACs for Low Back Pain and others
• Patient referral process
• Primary care provider engagement and registration requirements
• How to facilitate patient referrals to a RAC-LBP
• RAC-LBP patient outcomes
• Chiropractors' skills and RAC-LBP requirements
• Chiropractor roles in the RAC-LBP program
• RAC-LBP chiropractors' feedback
• Growing pains or challenges working in a RAC-LBP
• Chiropractors' experience and insights from RAC-LBP work

Key Links to References/Resources Discussed:

• Why RACs Matter to Chiropractors (includes PCP form for facilitating referrals)
• Rapid Access Clinics for Low Back Pain
• Get Involved in OCA-Sponsored Programs
• Access Appropriate Low Back Pain Care (public/patients' page)

About Dr. Henry Candelaria:

Dr. Candelaria is a Practice Lead at Trillium Health Partners, Mississauga Halton Rapid Access Clinic for Low Back Pain and also a practising chiropractor in Oakville, Ontario. 

Dr. Candelaria holds a Bachelor of Physical Health and Education from the University of Toronto.  He graduated Magna Cum Laude from the Canadian Memorial Chiropractic College (CMCC) in 2007.  During his time there, he was heavily influenced by a number of leaders and trailblazers in the chiropractic profession who placed an emphasis on functional movement analysis and evidence-based manual therapy and rehabilitation.  Most importantly, the process of establishing an accurate diagnosis was instilled in him during his time at CMCC and is something he has carried with him since graduation and throughout his career.  

Since graduation in 2007, he sought out non-traditional interprofessional chiropractic opportunities in the health care system.  He has since worked in various capacities in four different greater Toronto area hospitals, as well as a family health team and a community physiatry practice both in his current hometown of Oakville, Ontario.  These experiences have provided opportunities to engage and collaborate with a variety of musculoskeletal-related medical specialties, including neurology, physiatry, orthopaedics, neurosurgery, rheumatology, and sports medicine.  

He has also benefited from working with some of the best in the manual therapy and rehabilitation fields, ranging from osteopaths, physiotherapists, massage therapists, athletic therapists, chiropractors, strength and conditioning coaches, personal trainers, functional movement experts, and pilates and yoga practitioners."

Surfing the NASH Tsunami posted on Buzzsprout for the first time on July 23, 2020. Over the past two years, NASH Tsunami has posted 132 episodes and close to 400 posts when we include both episodes and conversations. This week, Jörn Schattenberg and Roger Green review some of the podcast's high points and set the stage for a week of resharing "Greatest Hits" episodes and conversations from the Vault of old postings.

The conversation starts with Jörn and Roger reminiscing about Jörn's first couple of appearances on the podcast, first helping to review the digital ILC 2020 and then coming on a couple of months later to discuss a paper Jörn had recently published looking at why NASH drug trials fail. Jörn and Roger discuss come of the lessons from the paper and how those have translated into changes in drug development and clinical trial strategies.

One interesting side note: Roger asks Jörn about feedback from the original paper. He comments that the authors rarely get feedback, especially those who are not the correspondent author (which Jörn was not for this paper). He commented that he receives more feedback from the discussions on NASH Tsunami, either on the podcast or in subsequent conversations with friends and colleagues who have heard the episode. 

Roger goes on to note that while the "Why Trials Fail" paper touched on challenges around biomarkers and conditional endpoints, we were only at the beginning of learning how many flaws existed in the system of semi-quantitative reads. This serves as a bridge to the specific conversations NASH Tsunami will repost from the Vault during this anniversary week. They address topics ranging from stellate cell activation to the role of NITs to the importance of patient advocacy. As they move from post to post, Jörn and Roger provide context on where each one fits in the history of the podcast and what they learned or experienced as a result. 

Of course, a podcast without Stephen or Louise can provide only so much of the podcast's history and key moments, but for listeners, this episode will give you an opportunity to reflect on your own intellectual journey with NAFLD and NASH and to ask yourself which of the older episodes and conversations you might want to revisit. As we noted earlier, we will post two episodes and six conversations we like to revisit in the week ahead.

Fast forwarding back to the day of the accident, June 28, 2017. What's going on with Johnita's leg? Her family? Are we amputating the leg or nah?  Death comes knocking again...