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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

Hi everyone. I know it's been awhile since I've done a new episode, but I'll be back shortly. I hope to have an episode out in the next two weeks. Hope everyone has been well. Talk to you soon.

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

We continue to review healthcare disparities and inequalities within our healthcare system and look at reasons why they may exist and what we can do to try to erase them.   Contact Info: Contact: 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 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

Part 2 of our series on addressing healthcare disparities:  We will review what baselines are and how they can impact clinical trials, as well as begin to discuss why it is important that clinical trials include people of all backgrounds.    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     https://www.aafa.org/   https://pharpoint.com/resources/the-history-of-clinical-trials/   https://acrpnet.org/2020/08/10/representation-in-clinical-trials-a-review-on-reaching-underrepresented-populations-in-research/   https://cdn.americanprogress.org/content/uploads/2020/05/06130714/HealthRace-factsheet.pdf?_ga=2.43335271.359077268.1632144410-1466257282.1632144410   https://health.gov/healthypeople/objectives-and-data/about-objectives   https://www.cdc.gov/nchs/hus/spotlight/2019-heart-disease-disparities.htm   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3149409/   https://www.kff.org/racial-equity-and-health-policy/issue-brief/disparities-in-health-and-health-care-5-key-question-and-answers/   https://scopeblog.stanford.edu/2015/01/27/why-establishing-a-health-baseline-is-a-critical-starting-point-for-achieving-future-health-goals/   https://pharmaceutical-journal.com/article/feature/why-we-need-to-talk-about-sex-and-clinical-trials   https://www.ama-assn.org/delivering-care/patient-support-advocacy/reducing-disparities-health-care      

This episode will begin the series on address healthcare disparities and accessibility.  This will be a multi-part series as there is a wealth of items that need to be addressed, and in this case, wealth is not good.  This episode will review key points and information for understanding what the next episodes hold and why addressing these now is not only important, it is imperative.    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 https://www.aafa.org/   https://www.healthypeople.gov/2020/about/foundation-health-measures/Disparities https://www.americanprogress.org/issues/race/reports/2020/05/07/484742/health-disparities-race-ethnicity/ https://www.nature.com/articles/s41746-020-0290-y#Sec14   Image: https://pixabay.com/users/openclipart-vectors-30363/?utm_source=link-attribution&utm_medium=referral&utm_campaign=image&utm_content=147925 

Part 2. We are exploring back to school safety tips - even though some of the tips don’t necessarily apply to illnesses, they are good reminders on what we need to be aware of as our most precious resources begin another academic year.   This episode will concentrate on keeping our kids healthy   Contact: 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 YouTube: SeeTheInvisible - YouTube   Source: https://www.uhhospitals.org/Healthy-at-UH/articles/2014/03/9-tips-for-keeping-kids-germ-free-at-school   https://sites.ed.gov/roadmap/parent-checklist/#school   https://healthblog.uofmhealth.org/childrens-health/making-back-to-school-decisions-for-families-underlying-health-conditions   https://www.cdc.gov/coronavirus/2019-ncov/community/schools-childcare/k-12-guidance.html

Part 2.  We are exploring back to school safety tips - even though some of the tips don’t necessarily apply to illnesses, they are good reminders on what we need to be aware of as our most precious resources begin another academic year.   This episode will concentrate on transportation tips.    Contact: 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 YouTube: SeeTheInvisible - YouTube   Sources:   https://www.healthychildren.org/English/ages-stages/gradeschool/school/Pages/Back-to-School-Tips.aspx   https://www.healthychildren.org/English/safety-prevention/on-the-go/Pages/Where-We-Stand-Seat-Belts-on-the-School-Bus.aspx    https://www.nsc.org/home-safety/seasonal-safety/back-to-school   https://dsp.delaware.gov/2021/08/24/127396/   https://www.metrofamilymagazine.com/top-10-tips-for-school-safety/

We are exploring back to school safety tips - even though some of the tips don’t necessarily apply to illnesses, they are good reminders on what we need to be aware of as our most precious resources begin another academic year.   This episode will concentrate on keeping our kids healthy   Contact: 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 YouTube: SeeTheInvisible - YouTube   Source:   https://www.uhhospitals.org/Healthy-at-UH/articles/2014/03/9-tips-for-keeping-kids-germ-free-at-school

We are exploring back to school safety tips - even though some of the tips don’t necessarily apply to illnesses, they are good reminders on what we need to be aware of as our most precious resources begin another academic year.   This episode will concentrate on transportation tips.    Contact: 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 YouTube: SeeTheInvisible - YouTube   Sources:   https://www.nsc.org/home-safety/seasonal-safety/back-to-school   https://dsp.delaware.gov/2021/08/24/127396/   https://www.metrofamilymagazine.com/top-10-tips-for-school-safety/

This episode is completely about my experiences and thoughts as my children get ready to start the new school yeat with a new Variant, Delta,, of Covid 19 starting to surge.    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

Today I am reviewing some events that have happened to those with allergies and/or asthma while flying.  This topic is very concerning to me as I have worried about what will happen if I need to fly, but an animal that I am allergic to is on the plane?  And for clarity, I’m not referring to Service Animals but to pets.  This topic can create hardships for all parties.  Those with allergies are in a position that will prevent them from being able to fly.  Those who want to bring their pet will have to find alternative means, and those who have Emotional Support Animals will find it difficult to fly as well.  Compassion, empathy and respect are truly needed at times when these situations align themselves, and we should all work together to try to find ways to accommodate as many people as possible.  And this is not only true in just these specific instances, but in so many other avenues of life that we face everyday.  Contact: 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 YouTube: SeeTheInvisible - YouTube   Image by Chrisjmit    https://www.instagram.com/motion_forge_cjm/   Sources:   https://www.aafa.org/traveling-with-asthma-allergies/   https://community.kidswithfoodallergies.org/blog/peanut-nut-allergy-risk-flying-airplanes-allergic-reaction?_gl=1*1tu4xqx*_ga*MTY5ODgyNjcwNi4xNjI0OTA1NzI1*_ga_8P8PELBV30*MTYyOTY5MjczMi4xMi4xLjE2Mjk2OTMwMTIuMA.. https://community.kidswithfoodallergies.org/blog/food-allergic-airline-passengers-left-stranded-after-court-dismisses-case-legal-advocates-say?_gl=1*1tu4xqx*_ga*MTY5ODgyNjcwNi4xNjI0OTA1NzI1*_ga_8P8PELBV30*MTYyOTY5MjczMi4xMi4xLjE2Mjk2OTMwMTIuMA..   https://community.aafa.org/blog/aafa-addresses-amtrak-s-new-pets-on-trains-policy?_gl=1*uxxl86*_ga*MTY5ODgyNjcwNi4xNjI0OTA1NzI1*_ga_8P8PELBV30*MTYyOTY5MjczMi4xMi4xLjE2Mjk2OTI5MDQuMA..   https://community.kidswithfoodallergies.org/blog/traveling-tips-food-allergies-children?_gl=1*uxxl86*_ga*MTY5ODgyNjcwNi4xNjI0OTA1NzI1*_ga_8P8PELBV30*MTYyOTY5MjczMi4xMi4xLjE2Mjk2OTI5MDQuMA..   https://community.aafa.org/blog/family-removed-from-plane-after-boy-s-allergic-reaction-to-dog?_gl=1*uxxl86*_ga*MTY5ODgyNjcwNi4xNjI0OTA1NzI1*_ga_8P8PELBV30*MTYyOTY5MjczMi4xMi4xLjE2Mjk2OTI5MDQuMA..  

Asthma, Allergies and Travel.  These words can strike fear in those who have to encounter all of these together.  I will go over tips in this episode on how to make a trip safer.   Note - I used the word "safer" because in some instances, even if you've taken appropriate steps, dander and other allergens can travel on other people's clothes.      Contact: 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 YouTube: SeeTheInvisible - YouTube   https://www.aafa.org/traveling-with-asthma-allergies/   https://www.aarp.org/travel/travel-tips/safety/info-2019/flying-with-allergies.html    

Today I will explore how the ADA addresses Asthma and Allergies. Some may not realize that both Asthma and Allergies are considered disabilities and protected under the Abilities with Disabilities Act.  Links to information regarding the ADA are in the description below.   Source: Are Asthma and Allergies Disabilities? | AAFA.org   ADA Information: ADA.gov homepage ADA Designated Investigative Services     Disclaimer:  I am in no way a medical, insurance or legal expert.  If you  have any questions in those areas, please be sure that you contact a specialist in that field.  I will discuss topics or articles that I have found on publicly accessible means.  Any opinion discussed is based on my experiences and my understanding of that particular topic and how it pertains to my life with my illness. It is not meant to, and should not be, used in place of any medical advice.   Contact: 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 YouTube: SeeTheInvisible - YouTube

Today I will review some of the information regarding when you're pregnant and have asthma.    Source: https://www.aafa.org/asthma-during-pregnancy/   Disclaimer:  I am in no way a medical, insurance or legal expert.  If you  have any questions in those areas, please be sure that you contact a specialist in that field.  I will discuss topics or articles that I have found on publicly accessible means.  Any opinion discussed is based on my experiences and my understanding of that particular topic and how it pertains to my life with my illness. It is not meant to, and should not be, used in place of any medical advice.   Contact: 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 YouTube: SeeTheInvisible - YouTube

In part 3 of exploring Asthma, we look at what to look for in an infant or toddler who may have asthma.   Disclaimer:  I am in no way a medical, insurance or legal expert.  If you  have any questions in those areas, please be sure that you contact a specialist in that field.  I will discuss topics or articles that I have found on publicly accessible means.  Any opinion discussed is based on my experiences and my understanding of that particular topic and how it pertains to my life with my illness. It is not meant to, and should not be, used in place of any medical advice.   Contact: 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 YouTube: SeeTheInvisible - YouTube   Sources: Asthma in Infants | AAFA.org Bronchiolitis - Bing Croup - Bing pulmonary aspiration - Bing Epiglottis - Bing