The Power of Patient Data
06/03/22 • 32 min
2 Listeners
Precision medicine harnesses the power of genetic data, which can improve treatment regimens and overall outcomes for patients. But accessing that data remains another challenge. Field correspondent Kate Pecora speaks with advocate Christine Von Raesfeld about how patient access to data can be a game-changer, and what can be done to expand that across the chronic disease community.
Plus, did you see your 2022 Medicare premium go up? Terry and Dr. Bob discuss why. They also deliver health policy updates from Capitol Hill that impact patients, including new legislation introduced that would shed light on the practices of drug supply chain middlemen known as pharmacy benefit managers (PBMs).
And June marks National Scleroderma Awareness Month. Patient correspondent Amy shares why more research funding is needed to understand this illness.
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Christine Von Raesfeld, CEO and Founder, People with Empathy
Amy Gietzen, Patient Correspondent
Links:
E&C Leaders Unveil FDA User Fees Legislative Package | Democrats, Energy and Commerce Committee
MDUFA Up for Renewal, Congress Recommends a Facelift | Patients Rising Now
June Is National Scleroderma Awareness Month | NIAMS
Pharmacy Benefit Manager Transparency Act of 2022
Patients Rising Now Joins over 100 Associations on Pharmacy Benefit Managers Letter
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: [email protected]
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Precision medicine harnesses the power of genetic data, which can improve treatment regimens and overall outcomes for patients. But accessing that data remains another challenge. Field correspondent Kate Pecora speaks with advocate Christine Von Raesfeld about how patient access to data can be a game-changer, and what can be done to expand that across the chronic disease community.
Plus, did you see your 2022 Medicare premium go up? Terry and Dr. Bob discuss why. They also deliver health policy updates from Capitol Hill that impact patients, including new legislation introduced that would shed light on the practices of drug supply chain middlemen known as pharmacy benefit managers (PBMs).
And June marks National Scleroderma Awareness Month. Patient correspondent Amy shares why more research funding is needed to understand this illness.
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Christine Von Raesfeld, CEO and Founder, People with Empathy
Amy Gietzen, Patient Correspondent
Links:
E&C Leaders Unveil FDA User Fees Legislative Package | Democrats, Energy and Commerce Committee
MDUFA Up for Renewal, Congress Recommends a Facelift | Patients Rising Now
June Is National Scleroderma Awareness Month | NIAMS
Pharmacy Benefit Manager Transparency Act of 2022
Patients Rising Now Joins over 100 Associations on Pharmacy Benefit Managers Letter
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: [email protected]
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Previous Episode
Formula Crisis Hurts Chronic Disease Community
The formula shortage crisis has been devastating for patients with rare metabolic conditions, like PKU, who depend on specialty formulas daily. We hear from patients and families impacted by the shortage, including Lillian Isabella and Sarah Chamberlin, executive director of National PKU News.
But patients have struggled to access and afford these formulas for years, which come with high price tags and aren’t always covered under insurance. A bill in Congress, the Medical Nutrition Equity Act, aims to change that.
And ahead of Memorial Day weekend, Terry and Dr. Bob discuss three health care bills in Congress drafted to improve health care access for veterans.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Sarah Chamberlin, Executive Director, National PKU News
Lillian Isabella, Patient Advocate
Links:
The Effects of the Abbott Hold on the Metabolic Community
Patients and Providers for Medical Nutrition Equity
Metabolic Formula | Patient Stories
Fiscal Year 2022 Veterans Affairs Major Medical Facility Authorization Act
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: [email protected]
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Next Episode
The Future of Pharmacies
No insurance? No problem. Blueberry Pharmacy in Pittsburgh is forging the path for a new kind of pharmacy. By cutting out the middlemen in the supply chain, Blueberry Pharmacy is able to provide its customers with inexpensive medications. It’s more transparent, and preserves the personal touch of an independent community pharmacy.
How’s it possible? Founder Kyle McCormick shares how his patients pay such low prices, and what the future of prescription drug access could look like with this model.
Plus, if you need to apply for SSI or SSDI, cancer legal expert Monica Bryant has you covered. She speaks with Terry about what all patients should know about these programs and how to access this insurance.
And speaking of disability insurance, hear from patient correspondent Lori Long. She discusses an SSDI policy currently in place that would cause her to lose her insurance if she gets married.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Guests:
Dr. Kyle McCormick, Founder and Pharmacist, Blueberry Pharmacy
Monica Bryant, COO, Triage Cancer
Lori Long, Patient Correspondent
Links:
Kyle McCormick’s Medium Article, “Imitation is the sincerest form of flattery”
How PBMs Raise Costs for Patients + Pharmacies
Can Mark Cuban Deliver Cheaper RX?
Marriage, Ableism, and Social Security Disability - Patients Rising
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: [email protected]
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