Ask The Expert Presents Hemophilia on Balance

In our first month of Ask the Expert's new format we welcome you to our extended conversation with Dr. Jonathan Roberts, a hematologist with the Bleeding and Clotting Disorders Institute. In this bonus episode, we continue our conversation with Dr. Roberts where we learn how growing up with hemophilia led him to a passion for science and later on, medical school. We'll hear his thoughts on what it has been like to be a physician and a patient during this paradigm shift in treatment for hemophilia and his thoughts about getting into the medical field for those interested in science. Join us as we get to know more of Dr. Roberts personal story!

Welcome to Episode 36 - or our Get to Know the Expert - of the Ask The Expert Podcast!

Check out the following resources Dr. Roberts mentioned for more information:

The Importance of HTC Care: https://stepsforliving.hemophilia.org/basics-of-bleeding-disorders/hemophilia-treatment-centers

Find Your Local Chapter: https://www.hemophilia.org/Community-Resources/Chapter-Directory

National Hemophilia Foundation: www.hemophilia.org

Growing up with hemophilia shaped how Dr. Jonathan Roberts encourages his patients every day. As the Associate Medical Director of the Bleeding and Clotting Disorder Institute, Dr. Roberts as had the opportunity to give back to the community he is personally connected to. Join us for a unique Ask the Expert with Dr. Roberts as he shares his thoughts on future treatments for hemophilia, his research on creating a better assay for von Willebrands diagnosis, and his passion for encouraging patients to become their own experts on their healthcare. A must listen for the bleeding disorder community!

Welcome to Episode 36 - Part 1 - of the Ask The Expert Podcast!

Check out the following resources Dr. Roberts mentioned for more information:

The Importance of HTC Care: https://stepsforliving.hemophilia.org/basics-of-bleeding-disorders/hemophilia-treatment-centers

Find Your Local Chapter: https://www.hemophilia.org/Community-Resources/Chapter-Directory

National Hemophilia Foundation: www.hemophilia.org

As we begin the new year many of us are encouraged to follow through on goals we have set for ourselves, but the stress involved with sticking to it and following through can affect our mental and emotional well-being. Debbie de la Riva from Mental Health Matters Too stops by to share some things to keep in mind about creating actual habit and behavior change as we work towards our goals. As a community leader encouraging awareness and education around mental health, Debbie will also share what we can expect in 2020 and her growing partnership with Believe Limited and the National Hemophilia Foundation. Start your new year off right and join us for another terrific episode of Ask the Expert!

Welcome to Episode 35 - or our New Year's Resolutions Watch-Out's Episode - of the Ask The Expert Podcast!

Program Notes:

Check out the following resources for more information:

Mental Health Matters Too Website: http://mentalhealthmatterstoo.com/

Resource Guide: http://mentalhealthmatterstoo.com/resources/

The Power of Habit by Charles Duhigg

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.

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!

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

https://www.hemophilia.org/

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"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.

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

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

BloodFeed: https://www.bloodfeed.com

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Find all of our bleeding disorders podcasts on BloodStreamMedia.com

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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

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

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Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

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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:

BloodStream Facebook Page

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Email [email protected]

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.