Ask The Expert - A BloodStream Media Podcast

Ask The Expert from BloodStream Media is a podcast series features hematologists and other healthcare experts answering listen-submitted questions about hemophilia, von willebrand disease, and other inherited bleeding disorders. Learn more at BloodStreamMedia.com.

Ep 40 - TO THE FUTURE w/ Patrick James Lynch 06/29/2020

Ep. 39 - w/ Dr. Len Valentino (Part 2) - Get to Know the Expert 05/28/2020

Ep. 39 - w/ Dr. Len Valentino (Part 1) - Become an Expert 05/25/2020

ATE - Ep. 38 - w/ Sharon Meyers (Part 2) - Get to Know the Expert 04/30/2020

ATE - Ep. 38 - w/ Sharon Meyers, HFA (Part 1) - Become an Expert 04/27/2020

ATE - Ep. 37 - w/ Brian Ragaishis (Part 2) - Get to Know the Expert 03/26/2020

ATE - Ep. 37 - w/ Brian Ragaishis- Live Smart, Play Smart 03/23/2020

ATE - Ep. 36 - w/ Dr. Jonathan Roberts (Part 2) - Get to Know the Expert 02/27/2020

ATE - Ep. 36 - w/ Dr. Jonathan Roberts (Part 1) 02/24/2020

Ep. 35: New Year’s Resolutions Watch-Outs - w/Debbie de la Riva 01/27/2020

Ep. 34: vWD Research Update - w/ Dr. Christopher Ng, M.D. 12/23/2019

Ep. 34: vWD Research Update - w/ Dr. Christopher Ng, M.D. von Willebrand disease is the most common bleeding disorder affecting 1% of our population and yet, it is the most unknown. Research for von Willebrand disease (vWD) continues to be elusive for patients and physicians alike causing frustration and emotional toil for those affected. On this episode of Ask the Expert, we welcome vWD hematologist and researcher, Dr. Christopher Ng M.D., from the University of Colorado Hemophilia and Thrombosis Center to share the latest from the medical community on diagnosis procedures, treatment, and the emotional struggle patients and their families experience as they search for concrete answers to their symptoms. Dr. Ng answers questions from our listeners with a thoughtful and compassionate approach to a complex disorder. Join us for a special episode of Ask the Expert developed for our vWD community! Welcome to Episode 34 - or our vWD Research Update Episode - of the Ask The Expert Podcast! There are several national conferences for von Willebrand patients and their caregivers, as well as online resources. Check out the following resources for more information: Foundation for Women & Girl with Blood Disorders NOW (National Outreach for von Willebrand) Conference - National conference for von Willebrand’s disease hosted by the Arizona Hemophilia Association: Victory for Women: vWD Connect Foundation, hosts a national conference for vWD Type 3 every year: National Hemophilia Foundation hosts a vWD track at the National Conference: “An accurate vWD diagnosis could take multiple times because it can be affected by patient stress, heavy exercise or inflammation.” Dr. Christopher Ng, M.D. “vWD researchers are looking beyond just levels - they are looking at other genetic makeup that could affect bleeding.” Dr. Christopher Ng, M.D. “vWD and platelets work together as a team to start the clotting process - you need both and they are hard to tell apart. .” Dr. Christopher Ng, M.D. /episode/index/show/asktheexpert/id/12505121

Ep. 33: Paradigm Shift in Hemophilia Treatment w/ - Dr. Michael Wang, M.D. 11/25/2019

Ep. 32: Surprise Billing 101 w/ Miriam Goldstein and Sonji Wilkes - October 28, 2019 10/28/2019

Ep. 32: Surprise Billing 101 w/ Miriam Goldstein and Sonji Wilkes - October 28, 2019 Imagine doing your due diligence for an upcoming medical procedure by double checking your facility and providers are in-network with your insurance plan, only to later find out that a provider treating you (e.g., an anesthesiologist or radiologist) does not participate in your health plan’s network after you receive a huge out-of-network bill out of nowhere. This is one example of a healthcare issue known as “surprise billing” and it could cost you and your family thousands of dollars. Ask the Expert joins HFA Director of Policy, Miriam Goldstein, to break the issue down for our understanding and explains potential solutions Washington is debating to fix this issue. Also joining us is HFA Director of Advocacy, Sonji Wilkes, a community member who faced this issue firsthand when her son was born and recently shared her story with Congress. A can’t-miss episode of Ask the Expert for all our rare disease advocates! Welcome to Episode 32 - or our Surprise Billing 101 Episode - of the Ask The Expert Podcast! If you receive a bill from an out-of-network provider for planned procedure or have further questions about surprise billing, contact HFA through their website: If you have been experiencing issues with your insurance company, HFA wants to hear your story! is an opportunity for you to share your story and help the entire bleeding disorders community. HFA collects stories from across the country, collates the data, identifies trends, and uses the information to help policymakers and providers better understand and meet the needs of our community. Participate here: “Surprise medical bills can arise in an emergency when the patient has no ability to select the emergency room, treating physicians, or ambulance providers.” - Miriam Goldstein, HFA Director of Policy “Unexpected medical bills, including surprise medical bills, lead the list of expenses most Americans worry they would not be able to afford.” -Miriam Goldstein, HFA Director of Policy “Don’t be discouraged, patients will always have the louder voice. Our job is to tell decision makers, this issue matters to me. It’s up to us.” - Sonji Wilkes, HFA Director of Advocacy /episode/index/show/asktheexpert/id/11808803

Ep. 31: MyBDC w/ Michelle Witkop and Maria Santaella - September 23, 2019 09/23/2019

Ep. 31: MyBDC w/ Michelle Witkop and Maria Santaella - September 23, 2019 As a member of the rare disease community, bleeding disorder patients and their families are used to taking surveys, signing up for clinical trials, and/or sharing our thoughts about what it is like living with a bleeding disorder. So what makes this new initiative from the National Hemophilia Foundation (NHF) different? Join us for a conversation with NHF Head of Research, Michelle Witkop and Research Nurse Specialist, Maria Santaella as they share the details of MyBDC, a community-powered registry aimed at capturing the patient experience. MyBDC is a comprehensive, personalized registry that focuses on the entire family unit. Want to learn more? Join us for an in-depth conversation about MyBDC on Ask the Expert! Welcome to Episode 31 - or our In-Depth Look into MyBDC Episode- of the Ask The Expert Podcast! Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities. For more information and to enroll in MyBDC, click the link: For specific questions email [email protected] The enrollment process will take 2 to 3 minutes. Each family member, caretaker and/or patient will need to enroll. The initial survey will take 20 to 30 minutes. All members of the family unit are encouraged to enroll. Patients, siblings, grandparents, caretakers, parents are able to enroll and create their own account. Currently, the platform only accepts adults, but a children’s portal is being created. NHF has a newsletter, and research information is included. To sign up for the newsletter, visit and scroll to the bottom of the page for the link. BloodFeed: Connect with BloodStream Media: Subscribe to BloodStream: iTunes: Stitcher: LibSyn: SoundCloud: TuneIn: Google Play: Spotify: /episode/index/show/asktheexpert/id/11352431

Ep. 30: Hemophilia Foundation of Michigan - Camp Bold Eagle Team - August 26, 2019 08/26/2019

Ep. 29: Does Treatment Adherence Mean Healthy Joints? w/ - Cindy Bailey, Ph.D - July 22, 2019 07/22/2019

Ep. 28: Gender Bias in Healthcare w/ - Christie VanHorne - June 24, 2019 06/24/2019

Ep. 28: Gender Bias in Healthcare w/ - Christie VanHorne - June 24, 2019 Did you know that women are twice as likely as men to be diagnosed with a mental health condition when presenting cardiovascular symptoms? Or that, on average, it takes women ten years to be diagnosed with endometriosis? On the latest episode of Ask the Expert, we dive into this topic and the long history of women feeling dismissed or ignored when it comes to their health. We are joined by Christie VanHorne, a consultant with CVH Consulting, who has developed training modules to demystify gender bias in healthcare. Christie walks us through the tools of how to identify gender bias, what is best when we relate to doctors and clinical staff when trying to have our voices heard, and most importantly, she reminds us that this is a cultural systemic issue. A great listen for the bleeding disorder community! Welcome to Episode 28 - or our Gender Bias in Healthcare Episode - of the Ask The Expert Podcast! Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities. Follow and contact Christie on her website and social channels to learn more and get a gender bias training in your area! web: cvhconsultingllc.com email: [email protected] Insta: cvhconsulting LinkedIn: Christie VanHorne, M.Ed, MPH FB: CVH Consulting, LLC “Women are twice as likely as men to be diagnosed with a mental health condition when presenting cardiovascular symptoms” -Christie VanHorne “Our genetics determine how we manifest disease and yet medicine is not research to differentiate.” - Christie VanHorne “It is so hard to defeat the stereotype “it’s all in their heads” -Christie VanHorne “Let’s shift our mindset towards seeing our doctors as partners in our care. They need us. We know when something is wrong.” -Christie VanHorne Connect with BloodStream: Email Find all of our bleeding disorders podcasts on BloodStream Host Patrick James Lynch on and . /episode/index/show/asktheexpert/id/10262246

Ep. 27: Creator and Founder of "Parents Empowering Parents" - Danna Merritt - May 27, 2019 05/27/2019

Ep. 26: Value of Board Services w/ Jorge de la Riva - April 22, 2019 04/22/2019

Ep. 25: Do Our Stories Actually Matter w/Bruce Barnum - March 25, 2019 03/25/2019

Ep. 24: Copay Accumulator Adjustment Programs Episode w/ Kollet Koulianos - February 25, 2019 02/25/2019

Ep. 24: Copay Accumulator Adjustment Programs Episode w/ Kollet Koulianos - February 25, 2019 Do you use copay cards to access your clotting factor? What if those cards were used by your insurance company but didn’t go towards your deductible or out-of-pocket max so you end up with a huge bill for your factor? This is called Copay Accumulator Adjustment Programs and they are the latest insurance tactic to control overall healthcare costs and could mean surprise bills for bleeding disorder patients. Our episode is with Kollet Koulianos, senior director of payer relations for The National Hemophilia Foundation, an expert on these programs. Join us as we walk through the mechanics of this issue, hear a patient’s story of dealing with this issue firsthand and how to advocate for yourself if you find yourself in this situation. A can’t miss episode of Ask the Expert! Welcome to Episode 24 - or our Copay Accumulator Adjustment Program Episode - of the Ask The Expert Podcast! Follow the link below to watch a video from the National Hemophilia Foundation on Copay Accumulator Adjustment Programs: Follow the link below to read about specific data about copay accumulator benefit structures: Follow the link below for more information about copay accumulator adjustment programs: Do you use copay cards to access your clotting factor? What if those cards were used by your insurance company but didn’t go towards your deductible or out-of-pocket max so you end up with a huge bill for your factor? This is called Copay Accumulator Adjustment Programs and they are the latest insurance tactic to control overall healthcare costs and could mean surprise bills for bleeding disorder patients. Our episode is with Kollet Koulianos, senior director of payer relations for The National Hemophilia Foundation, an expert on these programs. Join us as we walk through the mechanics of this issue, hear a patient’s story of dealing with this issue firsthand and how to advocate for yourself if you find yourself in this situation. A can’t miss episode of Ask the Expert! Welcome to Episode 24 - or our Copay Accumulator Adjustment Program Episode - of the Ask The Expert Podcast! Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities. Follow the link below to watch a video from the National Hemophilia Foundation on Copay Accumulator Adjustment Programs: Follow the link below to read about specific data about copay accumulator benefit structures: Follow the link below for more information about copay accumulator adjustment programs: Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to [email protected] (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, or tweet it to us or (host) All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & . Connect with BloodStream: Email Find all of our bleeding disorders podcasts on BloodStream Host Patrick James Lynch on and . /episode/index/show/asktheexpert/id/8772314