On this episode, I will be speaking with Erica Courtenay-Mann, an advocate for patients with Sarcoidosis. She gives talks regarding what it's like to live with chronic illnesses & she is involved in the Women of Color Committee and the ACTe Now! Patient Committee. She is a strong voice to raise awareness about the importance of clinical trials, especially in communities that are  underrepresented.  With each step taken towards more inclusive clinical trials and the data gained from them, we grow closer to a better understanding of how “snowflake" diseases  progress.

Links for further information:

https://www.stopsarcoidosis.org/ 

Mayo Clinic - Information on Clinical Trials and Sarcoidosis Research

Congress Enacts Legislation Requiring Guidance on Clinical Research Diversity and Modernization | Ropes & Gray LLP

Contact Info -

Podcast: See the Invisible: Living with an Invisible or Rare Disease

Contact: Email: Seetheinvisible2020@gmail.com

Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter

Facebook: SeetheInvisible2020 | Facebook

Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos

YouTube: SeeTheInvisible - YouTube

In this episode, I will be talking to Dr. Vegas Brown about Cerebral Cavernous Malformations  and the Breaking Barriers for Black Health Empowerment initiative to help address the disparities that still plague the Healthcare System, especially for black Americans that have a rare disease.

Photo Credit - Integra LifeSciences

Angioma Alliance  - https://www.alliancetocure.org/

Breaking Barriers -  https://www.blackccm.org/

HUED  -  https://huedco.com/

Cavernous malformations - Symptoms and causes - Mayo Clinic     -   https://www.mayoclinic.org/diseases-conditions/cavernous-malformations/symptoms-causes/syc-20360941

Cavernous malformation and the Breaking Barriers Initiative - https://rarerevolutionmagazine.com/cavernous-malformation-and-the-breaking-barriers-initiative/

Contact Info:

Email: Seetheinvisible2020@gmail.com

Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter

Facebook: SeetheInvisible2020 | Facebook

Website: SeetheInvisible2020.com – Dare to be seen!

Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos

Photo Credit - pulmonaryhypertensionnews.com

In this episode, I will be interviewing Dr. Divya Patel.  She works closely with Sarcoidosis patients and the work that she and so many other doctors do is important for recognition of this terrible disease.  I have seen this disease first-hand.  Ten years ago, my sister died from complications from one of the forms of sarcoidosis.  

It is extremely important that clinical trials are performed in order to advance the treatment of not only sarcoidosis, but all rare diseases.  Just as important is to make sure that all people are represented.  Black people are significantly underrepresented in clinical trials, not only in the U.S. but in many other countries.  We will be discussing what these trials are and why it is so important to have all people represented. 

"Dr. Patel is a Clinical Associate Professor of Pulmonology and Director of the Sarcoidosis and ILD Programs at the University of Florida.  The focus of her career is to improve the care of patients who are critically ill and have chronic pulmonary conditions such as sarcoidosis and interstitial disease. She has a special interest in understanding how sarcoidosis affects patients from underrepresented backgrounds and the obstacles they face in accessing care. Having completed specialized training, she participates in clinical research with the aim to improve the quality of life of patients."

Important Resources:

http://www.stopsarcoidosis.org/ACTNow (Survey)

http://www.stopsarcoidosis.org.

https://www.lung.org/lung-health-diseases/lung-disease-lookup/sarcoidosis

https://www.nhlbi.nih.gov/health/sarcoidosis

www.rarediseases.org

Moderna Sues Pfizer & a collaborator of the Pfizer vaccine for patent infringement using MRNA technology which Moderna held patents for.  Moderna had allowed other companies to use their technology during the pandemic, but is looking for "royalties" to state it simply for sales of the vaccine from a certain date, except for sales made to the US government and to some less wealthy countries. 

Sources:

Moderna Sues Pfizer and BioNTech Over Covid Vaccine Technology - The New York Times

Moderna files patent infringement lawsuits against Pfizer and BioNTech over mRNA Covid-19 vaccines | CNN

The Orphan Drug Act: Restoring the Mission to Rare Diseases : American Journal of Clinical Oncology.

The Orphan Drug Act: Implementation and Impact (OEI-09-00-00380

Moderna posts billions in profit from COVID-19 vaccine but won’t share technology | Doctors Without Borders

Countries urge drug companies to share vaccine know-how | AP News

https://www.bmj.com/content/377/bmj.o1086

What are the difference between patent and generic medicine?

Drug Patent Life: How Long Do Drug Patents Last? – DrugPatentWatch - Make Better Decisions.

From evergreening to thicketing: exploring the manipulation of pharma patents

Contact Info:

Contact: Email: Seetheinvisible2020@gmail.com

Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter

Facebook: SeetheInvisible2020 | Facebook

Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos

Photo Credit

SpencerBDavis1

https://pixabay.com/images/id-6165772/

I've learned a few more things about insurance and how things are handled regarding the Affordable Care Act, prices that providers charge, and how this can lead to bias, whether conscious or unconscious.

Contact Info:

Contact: Email: Seetheinvisible2020@gmail.com

Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter

Facebook: SeetheInvisible2020 | Facebook

Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos

YouTube: SeeTheInvisible - YouTube

Sources:

https://www.listennotes.com/da/podcasts/see-the-invisible/healthcare-disparities-09VdwJcNRz8/

https://www.kff.org/racial-equity-and-health-policy/issue-brief/disparities-in-health-and-health-care-5-key-question-and-answers/

https://www.kff.org/racial-equity-and-health-policy/issue-brief/health-coverage-by-race-and-ethnicity/

https://www.ama-assn.org/delivering-care/patient-support-advocacy/reducing-disparities-health-care

https://cdn.americanprogress.org/content/uploads/2020/05/06130714/HealthRace-factsheet.pdf?_ga=2.43335271.359077268.1632144410-1466257282.1632144410

http://www.healthcompassmilwaukee.org/tiles/index/display?alias=inequity

https://www.cdc.gov/nchs/hus/spotlight/2019-heart-disease-disparities.htm

I will provide updates as well as some new insight to some parts of the healthcare system as I have unfortunately experienced them over the past few months.  The disparities seem to be getting worse, and to me, I think it is impossible to even fathom the long-term impacts that these severe shortcomings have on patients and future generations.

Contact Info:

Contact: Email: Seetheinvisible2020@gmail.com

Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter

Facebook: SeetheInvisible2020 | Facebook

Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos

YouTube: SeeTheInvisible - YouTube

Sources:

https://www.listennotes.com/da/podcasts/see-the-invisible/healthcare-disparities-09VdwJcNRz8/

https://www.kff.org/racial-equity-and-health-policy/issue-brief/disparities-in-health-and-health-care-5-key-question-and-answers/

https://www.kff.org/racial-equity-and-health-policy/issue-brief/health-coverage-by-race-and-ethnicity/

https://www.ama-assn.org/delivering-care/patient-support-advocacy/reducing-disparities-health-care

https://cdn.americanprogress.org/content/uploads/2020/05/06130714/HealthRace-factsheet.pdf?_ga=2.43335271.359077268.1632144410-1466257282.1632144410

http://www.healthcompassmilwaukee.org/tiles/index/display?alias=inequity

https://www.cdc.gov/nchs/hus/spotlight/2019-heart-disease-disparities.htm

First, thank you all for your patience.  My family and I had Covid.  Thanksgiving was spent in quarantine and I'm still not 100% (but really, I haven't been 100% in years) but I'm slowly getting there.

Also, I will be moving the podcast to a new host.  I currently pay monthly for this host, but I'm finding that is not really feasible to continue.  I will be moving it to a no-charge host. I will keep it on this host until at least 12/24 but then will move it.  It should not cause any issues in the long term.  Possibly during a 24 hour period there may be some lag in updating from one host to the other, but the new host (supposedly) is supposed to be able to keep the same feed for the podcast.  The only thing that would change is if you did try to access the Podbean Website directly  If you use a podcast app, not should change, hopefully.

So this episode will continue the series on inequities in Healthcare.  As the new year approaches, and many people needing to change insurance for one reason or another, and deductibles resetting even if you are keeping the same insurance, many of us will face difficulties in navigating our healthcare over the next few months at least. 

Contact Info:

Contact: Email: Seetheinvisible2020@gmail.com

Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter

Facebook: SeetheInvisible2020 | Facebook

Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos

YouTube: SeeTheInvisible - YouTube

Sources:

https://www.listennotes.com/da/podcasts/see-the-invisible/healthcare-disparities-09VdwJcNRz8/

https://www.kff.org/racial-equity-and-health-policy/issue-brief/disparities-in-health-and-health-care-5-key-question-and-answers/

https://www.kff.org/racial-equity-and-health-policy/issue-brief/health-coverage-by-race-and-ethnicity/

https://www.ama-assn.org/delivering-care/patient-support-advocacy/reducing-disparities-health-care

https://cdn.americanprogress.org/content/uploads/2020/05/06130714/HealthRace-factsheet.pdf?_ga=2.43335271.359077268.1632144410-1466257282.1632144410

http://www.healthcompassmilwaukee.org/tiles/index/display?alias=inequity

https://www.cdc.gov/nchs/hus/spotlight/2019-heart-disease-disparities.htm