Info

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.
RSS Feed
Ask The Expert - A BloodStream Media Podcast
2020
June
May
April
March
February
January


2019
December
November
October
September
August
July
June
May
April
March
February
January


2018
December
November
October
September
August
July
June
May
April
March
February
January


2017
December
November
October
September
August
July
June
May
March
February
January


All Episodes
Archives
Now displaying: 2019
Dec 23, 2019

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 http://www.fwgbd.org/

NOW (National Outreach for von Willebrand) Conference - National conference for von Willebrand’s disease hosted by the Arizona Hemophilia Association: https://www.arizonahemophilia.org/now/

Victory for Women: https://victoryforwomen.org/

vWD Connect Foundation, hosts a national conference for vWD Type 3 every year: https://vwdconnect.org/

National Hemophilia Foundation hosts a vWD track at the National Conference: https://www.hemophilia.org/

 

“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. 

 

Nov 25, 2019

As we enter into a new phase of hemophilia treatments and products, the questions continue to grow and become more complicated by the day. Check out the latest episode of Ask the Expert, where we welcome Dr. Michael Wang, M.D. from the University of Colorado Hemophilia and Thrombosis center to discuss the current status of revolutionary potential treatments like gene therapy and non-factor replacements. Dr. Wang answers listeners own questions about the clinical trial process, research updates, what the medical community is encouraged about, as well as concerns being raised. In this true paradigm shift in how we view hemophilia treatment, the only consistent message from all sides as been - educate yourself and keep asking questions. Join us for a can’t miss episode of Ask the Expert!

 

Welcome to Episode 33 - or our Paradigm Shift in Hemophilia Treatment Episode - of the Ask The Expert Podcast! 

For the latest in clinical trial outcomes follow the National Hemophilia Foundation

https://www.hemophilia.org/

“Strong gene therapy candidates are encouraged to have meticulous logging skills and the availability to be seen every week for a period of time.” Dr. Michael Wang, M.D.

 

“The future will be about individualized choice based on lifestyle and the type of protection you want in a treatment.” Dr. Michael Wang, M.D.

 

“We will begin to understand mild/moderate patients in depth going forward because of the treatment shift due to sheer volume.” Dr. Michael Wang, M.D. 

Oct 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: www.hemophiliafed.org 

 

If you have been experiencing issues with your insurance company, HFA wants to hear your story! Project CALLS [Creating Alternatives to Limiting and Lacking Services] 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:

https://www.hemophiliafed.org/for-patient-families/navigate-insurance/project-calls/ 

 

“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

 

 


Sep 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: mybdc.hemophilia.org

For specific questions email research@hemophilia.org

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 www.hemophilia.org and scroll to the bottom of the page for the link.


BloodFeed: https://www.bloodfeed.com

 

Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream on Facebook

BloodStream on Twitter

 

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

Aug 26, 2019

Hemophilia Foundation of Michigan’s Camp Bold Eagle is turning 50 this year! Camp Bold Eagle is the longest running summer camp for kids and teens with bleeding disorders in the United States and to celebrate this incredible accomplishment and to relish in the joy of summer camp, Ask the Expert invited staff of the Hemophilia Foundation of Michigan to join us as they reminisce about the history of camp, the amazing leadership that is developed at camp and share the evolution of Camp Bold Eagle. Whether you are a parent struggling with sending your child to camp for the first time or a seasoned camper that can’t wait to see your friends next summer, join us for a conversation about the history of bleeding disorder camps and unique power camp has to foster independence in all of us.

 

Welcome to Episode 30 - or our Summer Camp Special! Episode - of the Ask The Expert Podcast!  

 

Find a bleeding disorder camp in your area:

Hemophilia Federation of America Camp Directory

National Hemophilia Foundation Camp Directory

 

  • “The concept back then was to see what they could do rather than couldn’t do.“ -Sue Lerch
  • “Many chronic disease camps are designed to forget about disease, but hemophilia camp was designed to engage with the disorder to develop independence.” -Sue Lerch
  • “Camp is not about the place - it’s about the people.” - Tim Wicks

 

 

 

Jul 22, 2019

 

Is a healthy joint an active joint or a stagnant joint? How many bleeds does it take to create damage? How does treatment adherence compliment our activity levels and joint health? Join us for the latest episode of Ask the Expert where nationally recognized physical therapist, Cindy Bailey, Ph.D, gives us the 101 on joint health, physical activity, and treatment adherence. Cindy is the director of physical therapy at the Los Angeles Orthopaedic Institute for Children and walks us through what defines joint health, how one bleed can create irreversible damage and the value of adhering to treatment regimens to stay active. Join us for a great Ask the Expert!

 

Welcome to Episode 29 - or our Does Treatment Adherence Mean Healthy Joints? Episode - of the Ask The Expert Podcast!  

 

For more information about joint health and physical activity, check out these resources:

Steps for Living: https://stepsforliving.hemophilia.org/step-up/treatment/treat-responsibly-today-for-a-healthy-tomorrow

Hemophilia Federation of America: https://www.hemophiliafed.org/understanding-bleeding-disorders/complications/joint-damage/

World Federation of Hemophilia: http://elearning.wfh.org/elearning-centres/prophylaxis/

Bayer Announces  A Voluntary Recall of Two Lots of Kogenate FS: https://www.hemophilia.org/Newsroom/Medical-Advisories/Medical-Advisory-425-Bayer-Announces-a-Voluntary-Recall-of-Two-Lots-of-Kogenate-FS

 

  • If you have better musculature around the joints, you will have fewer bleeds. ” -Cindy Bailey, Ph.D
  • “Up to the ages of 8-11, you can repair cartilage damage by a bleed.”  - Cindy Bailey, Ph.D
  • Adherence is incredibly important because any amount of blood in the joint can cause deterioration” -Cindy Bailey, Ph.D

 

 

BloodFeed: https://www.bloodfeed.com

 

Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream on Facebook

BloodStream on Twitter

 

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

Jun 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: christie@cvhconsultingllc.com

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:

BloodStream Facebook Page

BloodStream Twitter Account

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

May 27, 2019

The latest episode of Ask the Expert features a conversation with Danna Merritt, a chronic disease social worker with over 50 years experience counseling parents of a child with a serious medical condition. Danna is creator and founder of Parents Empowering Parents (PEP), a decades long parenting program for the bleeding disorder community and Energizing and Empowering Minds, a non-profit with the mission of helping parents be parents, and kids be kids, in spite of their medical challenges. With her wealth of experience and a strong grasp of child development, Danna is the perfect expert mind to discuss the nuances of parenting. Danna answers real listener questions and shares tangible skills that parents can utilize. Listen in for a wonderful conversation has we celebrate the joys and struggles of parenting.

Welcome to Episode 27 - or our Parenting episode - of the Ask The Expert Podcast!

 

Follow the link below to follow Danna’s non-profit Energizing and Empowering Minds and to connect to other parents in your area:

https://eeminds.org/

 

Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook PageFacebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia. 

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

Apr 22, 2019

Are you considering board service with your local chapter or a national organization? Maybe you are currently serving on a board and know the unique struggle this volunteer position can face. Join us for a special Ask the Expert episode as we sit down with Jorge de la Riva, former board chair of The National Hemophilia Foundation. Jorge shares his personal views of the role of a board member and how serving your community in this way can be rewarding for you and your family. “The best way to find yourself is to lose yourself in the service of others” - Gandhi.

Welcome to Episode 26 - or our The Value of Board Service Episode - of the Ask The Expert Podcast!  

 

Follow the link below for continued resources on board service:

https://boardsource.org/ 

 

  • “The best thing a new board member can do is listen.”

  • “The Board Chair/President is there to serve the community and staff, while execited the will of the board.”

  • “A solid working relationship between the CEO/executive director and the board chair is based on aligned values, transparency and clear directives from the board.”

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

Mar 25, 2019

Ever wonder what happens after you meet with a legislator and their staff? Ever wonder what they do with your courageous, compelling stories? Can you actually affect policy changes by advocating? Do your stories even matter? Join us for a special episode of Ask the Expert as we pull back the curtain on the legislative process! This month our guest is Bruce Barnum, a former staffer to Senator Al Franken. Bruce gives a glimpse of what it is like working for a congressional office, the importance of telling your story and how policy is informed by YOU! This is your chance to see that your voices truly matter. A can’t miss episode of Ask the Expert!

Welcome to Episode 25 - or our Do Our Stories Actually Matter Episode - of the Ask The Expert Podcast!  

 

Follow the link below to find out who represents you in Congress: https://whoismyrepresentative.com/

 

Additional Resources: To find contact information for your local district offices, go to your member’s website and find what office is closest to your home. Ask to meet with the member when they are back in town. Make sure to tell the staff what you’d like to discuss and have a flexible time-frame for the best chance of getting a meeting.  

Follow the links below to see NHF and HFA’s policy positions:

https://www.hemophilia.org/Advocacy-Healthcare-Coverage/Advocacy-Priorities

https://www.hemophiliafed.org/our-role-and-programs/assisting-and-advocating/policy-priorities/

 

Feb 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:

https://www.hemophilia.org/Newsroom/Advocacy-Legislative-News/Copay-Accumulator-Adjustments-What-are-they-and-how-they-can-affect-you

  

Follow the link below to read about specific data about copay accumulator benefit structures:

https://www.drugchannels.net/2018/09/copay-accumulator-update-widespread.html

 

Follow the link below for more information about copay accumulator adjustment programs:

https://www.latimes.com/business/lazarus/la-fi-lazarus-healthcare-copay-accumulators-20180427-story.html

 

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:

https://www.hemophilia.org/Newsroom/Advocacy-Legislative-News/Copay-Accumulator-Adjustments-What-are-they-and-how-they-can-affect-you

  

Follow the link below to read about specific data about copay accumulator benefit structures:

https://www.drugchannels.net/2018/09/copay-accumulator-update-widespread.html

 

Follow the link below for more information about copay accumulator adjustment programs:

https://www.latimes.com/business/lazarus/la-fi-lazarus-healthcare-copay-accumulators-20180427-story.html

 

Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook PageFacebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia. 

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

 

 

Jan 28, 2019

New Ask the Expert host, Amy Board, sits down with previous ATE host Chris Bombardier! We ask Chris about his next adventure as the executive director of Save One Life and the future of the organization. Save One Life is a global non-profit founded by Laurie Kelley serving individuals and families affected by bleeding disorders in the developing world. Join us for a conversation with Chris as he explains the current realities of having a bleeding disorder in the developing world and what we can do to help and bring awareness.

Welcome to Episode 23 - or our Chris Bombardier’s Next Adventure 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 sponsor a child with hemophilia across the globe:

https://saveonelife.net/sponsorship

Follow the link below to contribute to Save One Life’s scholarship program:

https://saveonelife.net/help-a-student-pay-for-college

Follow the link below to contribute to a family in the developing world start a business:

https://saveonelife.net/help-a-family-start-a-business

Follow the link below to send a child in the developing world to camp:

https://saveonelife.net/product/help-a-child-go-to-camp

Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook PageFacebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia. 

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

1