Patients Rising Podcast

Many patients with chronic illnesses have had their treatments delayed or postponed as healthcare shifts its focus to COVID-19. Lifesaving procedures for the chronically ill have been put on the back burner. 

How does the healthcare system prioritize who is worth immediate care, and what does that mean for the patients put at the end of the line?

On this episode, we explore these moral dilemmas in healthcare with the help of Dr. Camosy, a professor of bioethics. And Kate speaks with Jennifer McNary, a mother fighting against ICER’s pricing roadblocks in order to get her sons’ access to treatment for Duchenne Muscular Dystrophy. 

Guest:

Charles C. Camosy, Ph. D. Author and associate professor of theological and social ethics at Fordham University 

Dr. Charles C. Camosy is an award-winning author and avid researcher on issues related to bioethics, healthcare, moral anthropology, and more. Through his work on “intellectual solidarity,” he aims to unpack the often complex and highly emotional issues that are prevalent in societal discourse. 

Dr. Camosy has authored four books that analyze the polarization of topics including abortion, binaries in public discourse, treatment of animals, and healthcare. He has written numerous academic articles on issues of morality and bioethics. 

Currently, Dr. Camosy is an associate professor at Fordham University’s theology department. He serves on both the board of the College Theology Society and the advisory board of the New England Partnership for the Common Good. 

Dr. Camosy earned his B.A., M.A., and Ph.D. from the University of Notre Dame in Indiana. 

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 

Links:

Dr. Charles C. Camosy 

The drugs and treatments that could stop COVID-19

Patients Rights Advocate

Patients Rising Concierge 

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, 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.

Restaurant menus list their prices. So why not hospitals? Unfortunately, patients usually don’t know the cost of their procedure or medication until they get the bill. Getting access to hospital pricing is also just as difficult as getting a hold of your own digital medical records. So how can patients take back control over their healthcare decisions?

On this episode, we discuss the ins and outs of price transparency models, and how to pass legislation that will put you in control of your finances and health. 

Guest:

Cynthia Fisher, Founder and Chairman, PatientRightsAdvocate.org and founder and former CEO of ViaCord, Inc. 

Cynthia Fisher is an established science entrepreneur with over 25 years of experience in the life science industries. She is an advocate for real price transparency, having founded the non-profit Patient Rights Advocate in 2017. Under her leadership, the organization seeks to elevate the voices of patients that are burdened by healthcare costs and to raise awareness of price transparent healthcare models.  

Cynthia is best known for establishing ViaCord Inc. in 1993, a company that offers umbilical cord blood banking and genomic testing with the goal of potentially treating select cancers and genetic diseases. In 2000, Cynthia co-founded ViaCell Inc., which absorbed ViaCord Inc. as a new division. At ViaCell Inc., Cynthia served as President and sat on the Board of Directors. 

Her experience in healthcare advocacy also extends into the public sector. In 2017, Cynthia was appointed to the Health Information Technology Advisory Committee by former Speaker of the House Paul Ryan.  

Cynthia earned a B.S. in Biophysics from Ursinus College in Collegeville, Pennsylvania.  Ursinus College also awarded her an Honorary Doctorate in Science. She earned her MBA from Harvard Business School. 

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 

Links:

The APANDEMIC Initiative

Patients Rights Advocate

The Discomfort Zone

The Discomfort Zone Twitter

The Discomfort Zone Facebook

The Discomfort Zone Instagram

Patients Rising Concierge 

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, 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.

COVID-19 has brought global attention to the fragility of the medical supply chain. For those with chronic illnesses, drug shortages and access to medication often are lifelong battles. As the coronavirus spread begins to slow, will the pandemic bring about increased awareness of the everyday struggles of patients with chronic diseases? And how can we bridge the gaps in the medical supply chain?

On this episode of the Patients Rising Podcast, we discuss new technologies that can quickly develop small-batch drugs in high demand among patients. We also look into how the pandemic has slowed the supply chain’s transportation of APIs (active pharmaceutical ingredients). 

Guest:

Lili Valletta, Founder and CEO of CIEN+, and Marketing Executive at Bright Path Laboratories.

Lili Valletta is a marketing professional with over 20 years of experience, specifically in the medical and pharmaceutical industries. In 2010, Lili co-founded CIEN+, which is a Cultural Intelligence Engine designed to help companies bring cultural trends into their business designs and solutions. 

In conjunction with CIEN+, where Lili continues to serve as the CEO, she is a marketing executive and strategic partner at Bright Path Laboratories. Bright Path focuses on pharmaceutical manufacturing technology for API production designed to meet drug shortages in the supply chain due to its scalable design. 

For 10 years, Lili worked as the Director of Global Marketing at Johnson & Johnson, where she developed numerous diversity marketing initiatives, including the company's first multicultural marketing strategy. PRWeek named Lili one of its Top 50 Healthcare Influencers. 

Lili earned her Masters in Business Administration from the University of Colorado in Colorado Springs. 

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 

Links:

Bright Path Laboratories 

The APANDEMIC Initiative

Patients Rising Concierge 

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, 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 positions of Patients Rising.

Medical supply chains that transport medications for chronically ill patients are at risk of shutting down due to COVID-19. And for those that have contracted the disease, getting access to clinical trials is not an easy process. For at-risk patients, accessing life-saving medications is becoming increasingly more difficult. 

This week on the Patients Rising Podcast, we discuss treatment testing for coronavirus. We also discuss how the strain on the medical supply chain is impacting the routine medications relied on by thousands of chronically ill Americans. Finally, we follow up with some good patient news on Michael Goldsmith’s acceptance into a coronavirus clinical trial. 

Guest:

Robert Hariri, M.D, Ph.D Chairman, Founder, and CEO of Celularity

Dr. Robert Hariri is an experienced surgeon and biomedical scientist. His research focuses on utilizing stem cells for the treatment of numerous human diseases, particularly in the areas of immuno-oncology and cell therapy. Dr. Hariri’s major medical discoveries include his findings on human placenta-derived stem cells, which include pluripotent stem cells and novel immune cells. 

For nearly 14 years, Dr. Hariri served as the CEO of Celgene’s Cellular Therapeutics division, a global pharmaceutical company. In 2014, he co-founded Human Longevity, Inc., a genomics-based biotechnology company. 

Currently, Dr. Hariri serves as Chairman and CEO of Celularity. The biotech company focuses on cell therapy research based on Dr. Hariri’s findings on the uses of postpartum placenta cells. This research guides Celularity’s work in immuno-oncology and hematology. 

Dr. Hariri earned his B.A. in Biological Anthropology from Columbia University and his M.D. and Ph.D. from Cornell University. 

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 

Links:

Fight Like a Warrior

Patients Rising Concierge 

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, 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.

As coronavirus continues to spread across New York City, other virus hot spots are emerging across the country, including Detroit and New Orleans. These epicenters are seeing a surge in coronavirus patients but lack the medical supplies and staff to combat this growing crisis. But how exactly do these coronavirus epicenters come to be? And what does this mean for immunodeficient patients living in these places? 

This week on the Patients Rising Podcast, we have part two of Dr. Bob’s interview with Dr. Hugh Rosen, who explains how and why these COVID-19 hotspots emerge. He also discusses experimental treatments for those who have contracted the virus. 

Guest:

Hugh Rosen, M.D., Ph.D. Professor of Molecular Medicine at The Scripps Research Institute’s California Campus and Chairman and President of ActivX Biosciences Inc.

Dr. Rosen has over 30 years of medical experience with a research focus on lymphocyte trafficking. His work at The Scripp’s Research Institute (TSRI) led to the development of ozanimod, which helps alleviate brain atrophy for patients with multiple sclerosis. Its benefits may also extend to those suffering from other autoimmune conditions. 

Prior to his work at TSRI, Dr. Rosen served as the Executive Director of Immunology, Rheumatology, and Infectious Diseases at Merck Research Laboratories. He was also Chair of the Worldwide Business Strategy Team for Antibacterials and Antifungals. 

Currently, Dr. Rosen serves on the Board of Directors at Regulus. In 2017, Dr. Rosen became the President and Chairman of ActivX Bioscience Inc., a biopharmeceutical company focused on the research and development of molecular drugs.  

Dr. Rosen earned his M.D. from the University of Cape Town and his Ph.D. in Physiological Sciences from the University of Oxford. 

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 

Links:

Patients Rising Concierge 

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, want to suggest a show topic or share your story as a patient correspondent?

Drop us a line: [email protected]

Both the federal and state governments have begun turning to the private sector for solutions to supply tests, masks, and other necessary materials for fighting COVID-19. The private sector may also have potential coronavirus treatments, some of which are already in use for other diseases.

On Episode 5 of the Patients Rising Podcast, we discuss the potential treatment options for COVID-19 and the other ways in which the private sector is helping to alleviate the impact of coronavirus. 

Guests:

Sara Goldberg, Clinical social worker.

Hugh Rosen, M.D., Ph.D. Professor of Molecular Medicine at The Scripps Research Institute’s California Campus and Chairman and President of ActivX Biosciences Inc.

Dr. Rosen has over 30 years of medical experience with a research focus on lymphocyte trafficking. His work at The Scripp’s Research Institute (TSRI) led to the development of ozanimod, which helps alleviate brain atrophy for patients with multiple sclerosis. Its benefits may also extend to those suffering from other autoimmune conditions. 

Prior to his work at TSRI, Dr. Rosen served as the Executive Director of Immunology, Rheumatology, and Infectious Diseases at Merck Research Laboratories. He was also Chair of the Worldwide Business Strategy Team for Antibacterials and Antifungals. 

Currently, Dr. Rosen serves on the Board of Directors at Regulus. In 2017, Dr. Rosen became the President and Chairman of ActivX Bioscience Inc., a biopharmaceutical company focused on the research and development of molecular drugs. 

Dr. Rosen earned his M.D. from the University of Cape Town and his Ph.D. in Physiological Sciences from the University of Oxford. 

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 

Links:

Patients Rising Concierge 

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, want to suggest a show topic or share your story as a patient correspondent?

Drop us a line: [email protected]

Fears of shortages of critical health supplies like hospital gowns, masks and drugs are a big topic on every media channel. Public health leaders are concerned about reports healthcare professionals are running short of the personal protective equipment they need. Government officials are working to address the supply chain in time, and this week President Trump invoked the Defense Production Act of 1950 to address predicted supply shortfalls. 

On Episode 4 of the Patients Rising Podcast, we discuss how the current pandemic is putting the medical supply chain to the test and how this affects patients with chronic disease. 

Guest:

Marion Mass, M.D.

Philadelphia-area pediatrician and Co-Founder and Executive VP of The Practicing Physicians of America. 

Dr. Marion Mass has practiced pediatrics in Philadelphia for over 20 years. She also currently serves as a board member of the Bucks County Health Initiative and as a delegate to the Pennsylvania Medical Society. Dr. Mass has previously been on the board of Physicians Working Together, a grassroots advocacy group focused on educating patients on healthcare issues and empowering doctors to join the healthcare reform movement. 

Alongside her extensive medical career, Dr. Mass has also focused on advocating for sustainability within the American healthcare system. 

In 2017, Dr. Mass co-founded The Practicing Physicians of America, which gives physicians across America a voice in Washington, D.C., and seeks to protect the patient-physician relationship and support physician autonomy. Her focus is on drug shortages and maximizing patients’ value in the healthcare system. 

Dr. Mass earned her M.D. from Duke University School of Medicine. 

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 

Links:

Alabama Rare

National Organization for Rare Disorders

Patients Rising Concierge 

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 for local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org

Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?

Drop us a line: [email protected]

What does coronavirus spread across the country mean for the 10 million Americans who are immuno-deficient? While COVID-19 poses a risk for the elderly, it is also concerning for Americans suffering from underlying chronic health illnesses, such as diabetes, high blood pressure, and cardiovascular disease and those in treatment for cancer. 

On this episode of the Patients Rising Podcast, we break down what the risk of coronavirus means for these patients and their caregivers, and what precautionary resources and steps should be considered. 

Guest:

Paul Offit, M.D., Professor of Pediatrics and Director of Infectious Diseases at The Children’s Hospital of Philadelphia. 

He has worked at the Children’s Hospital of Philadelphia for over 20 years, where he serves as the Director of Infectious Diseases and as a Professor of Pediatrics. His expertise and research focus is on vaccines, immunology, and virology. 

Dr. Offit is well known for being the co-creator of the rotavirus vaccine, RotaTeq, which was approved for inclusion in the U.S. vaccination schedule in 2006. For his work on the vaccine, he received the Luigi Mastroianni and William Osler Awards from the University of Pennsylvania School of Medicine and the Charles Mérieux Award from the National Foundation for Infectious Diseases. He was also honored by Bill and Melinda Gates during the launch of their Foundation’s Living Proof Project for global health.

He has published over 160 papers in medical journals dealing with his work on the rotavirus vaccine and overall vaccine safety practices. He has also authored eight books on vaccines and how they are communicated about with the general public. 

Previously, Dr. Paul Offit has been a member of the Centers for Disease Control and Prevention Advisory Committee on Immunization Practices. He is a founding board member of the Autism Science Foundation and a board member of Every Child by Two. 

Dr. Offit earned a B.S. from Tufts University in Boston, Massachusetts, and earned his M.D. from the University of Maryland, Baltimore. 

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 

Links:

Virology expert: coronavirus mortality ‘keeps coming down’ 

Philly vaccine pioneer: We can’t rush a coronavirus vaccine |Q&A 

Where to go for the latest information:

CDC: COVID-19 What You Should Know

Coronavirus.gov

Resources from NIH

• Coronaviruses (National Institute of Allergy and Infectious Diseases)
• Coronavirus resources (National Library of Medicine)
• Coronavirus news and resources for global health researchers (Fogarty International Center)
• NIH clinical trial of remdesivir to treat COVID-19 begins (National Institute of Allergy and Infectious Diseases)
• Structural Biology Points Way to Coronavirus Vaccine (NIH Director's Blog)
• NIH Guidance on Travel and Meetings

Will my insurance cover a coronavirus test?

Health Insurance Providers Respond to Caronavirus (COVID-19)

Medicare: Is my test, item, or service covered?

Who should be tested for Coronavirus?

In addition to the advice that is continually updated by the CDC, you should check with your doctor about whether you need to be tested or when to take additional steps to protect yourself. 

CDC: COVID-19 Information for Specific Groups

Are my meds in short supply? 

ASHP: Current Drug Shortages

Data and studies:

GIS COVID-19 Data

Clinical predictors of mortality due to COVID-19 based on an analysis of data of 150 patients from Wuhan, China

Get a flu shot.

Finally, we would be remiss if we did not urge our audience to get a flu shot and ensure that vaccinations for other diseases such as measles, pneumonia, etc., are up to date.

There have been 32 million cases of influenza during the 2019-2020 flu season.

Last year nearly 1300 people contracted measles.  That’s the highest number since 1992.

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, want to suggest a show topic or share your story as a patient correspondent?

Drop us a line: [email protected]

Price: one the of largest barriers to medical treatment and accessible medicine. As many patients struggle to afford the high price tags at the pharmacy, there might soon be a solution. As more biosimilars enter the commercial market, some experts are claiming that they will actually lead to lower drug costs for patients everywhere. 

In the second episode of the Patients Rising Podcast, we look into the relationship between biosimilars and drug prices, break down what exactly biosimilars are, and how they are changing the healthcare landscape. 

Guest:

Chad Pettit, Executive Director, Global Value Access and Policy, Amgen Biosimilars Business Unit, Thousand Oaks, California.

Chad Pettit has worked with biotechnology company Amgen for nearly 20 years. In his current role as Executive Director, Mr. Pettit serves as a liaison with biopharmaceutical companies on biosimilar policy. He also focuses on introducing biosimilars to the market and working with policy to ensure commercialization leads to cost savings in all global regions. He works at the intersection of policy and biopharmaceutical medicine to facilitate greater accessibility and has an acute understanding of the impacts biosimilars have on the global health care market. Most recently, he has worked to construct a global market access launch strategy for Amgen’s 10 biosimilars. 

Previously at Amgen, Mr. Pettit served on the U.S. Biosimilars industry trade group as the Amgen Board Member. 

Mr. Pettit earned a B.S. in Chemical Engineering from the University of California, Davis, and an M.B.A. from the University of California, Los Angeles. 

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 

Links: 

Public Workshop: FDA/FTC Workshop on a Competitive Marketplace for Biosimilars

Heimerdinger Foundation

Ceres Community Project

Patient’s Rising Concierge

The Centers for Medicare & Medicaid services are about to put a rule in place that allows insurers and pharmacy benefit managers to get paid TWICE for some of your prescriptions. 

This policy is called “the copay accumulator,” and it allows insurers to accept payment for a drug without applying the payment to your deductible. 

In the first episode of the Patients Rising Podcast, we discuss copay accumulators, and what patients need to know about them. We also talk about a looming deadline to comment on a proposed federal rule on the topic. 

How to take action

The deadline to comment on the rule regarding copay accumulators is 11:59 pm eastern standard time Monday, March 2nd, 2020.

Let your voice be heard. Send your comments directly to Seema Verma, Administrator, Centers for Medicaid and Medicare Services (CMS).

Tell her to honor your already high out of pocket costs, and to allow copay assistance to be applied to your deductible. 

You can also do this directly from our website

Guest:

Carl Schmid, Executive Director, HIV + Hepatitis Policy Institute, Washington, D.C.

Carl Schmid has been a national policy and advocacy leader in the HIV community for over 20 years.  He spent 16 years with The AIDS Institute, where he served as its Deputy Executive Director and led the Institute’s HIV and viral hepatitis federal policy work before the executive agencies and the Congress. In December 2019, he left The AIDS Institute to form the HIV + Hepatitis Policy Institute, which promotes quality and affordable healthcare for people living with or at risk of HIV, hepatitis, and other serious and chronic health conditions.

Mr. Schmid helps lead the HIV and hepatitis communities’ advocacy efforts in Washington, D.C., to ensure domestic HIV and hepatitis programs, including the Ending the HIV Epidemic initiative, the Ryan White Program, CDC HIV and hepatitis prevention programs, and NIH AIDS Research, are based on sound public policy and receive full funding. 

He has expertise in healthcare financing systems, including Medicaid and Medicare, and leads efforts to ensure that the Affordable Care Act meets the needs of people living with or at risk of HIV and hepatitis. As part of HIV + Hep’s work in advocating for people with HIV and hepatitis, Mr. Schmid works extensively with other patient and disease groups on collective efforts to ensure that patients, particularly those with chronic conditions, have access to quality and affordable healthcare, including prescription medications.

Mr. Schmid served as a consumer representative to the National Association of Insurance Commissioners in 2018-19.  In July 2019, he was appointed to the PEPFAR Scientific Advisory Board.

He was a member of the Presidential Advisory Council on HIV/AIDS from 2007-09 and chaired its Domestic Subcommittee.  In 2010, he was named by POZ magazine as one of the 100 most effective AIDS fighters and by Whitman-Walker Health as one of the 25 individuals who have played prominent roles in the fight against HIV in D.C. In 2016, he was named the Champion of the Year by the ADAP Advocacy Association. 

Mr. Schmid earned a B.A. in Public Affairs and a M.B.A. in International Affairs from the George Washington University in Washington, D.C.

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