UK Zack Pemberton-Whiteley, CEO of UK-based blood cancer charity Leukaemia Care, discusses the importance of patient and patient organizations’ involvement in the decision-making process for therapy appraisals, the use of HTA, and his take on moving CAR-T cells to an earlier line of therapy. We are calling strongly for a…
Global Cancer is one of the most frightening words in any language but is especially heart-wrenching when it comes to children. João de Bragança, President of Childhood Cancer International (CCI) and Nicole Scobie, President of Zoé4life and CCI European Board Member, share CCI’s aims as the largest parent-led international organisation supporting…
USA Writing in the May edition of DIA’s Global Forum magazine, Erica Lyons, Sarrit Kovacs, Matthew Kowalik, and Jessica Lee from the Division of Gastroenterology, Office of New Drugs, CDER at the US FDA look at how patient input is increasingly being utilised in new drug development, its importance in assessing…
Global Rare disease patient advocate Monica Weldon outlines some of the ethical conundrums around embryonic gene editing. With CRISPR technology again in the news as part of the rush to develop COVID-19 treatments and vaccines, Weldon highlights the arguments for and against embryonic gene editing from a patient/parent perspective and makes…
USA Ahead of the 2020 US National Organization for Rare Disorders (NORD)’s Rare Diseases and Orphan Products Breakthrough Summit, NORD president and CEO Peter L. Saltonstall outlines his hopes for the Summit, the impact of COVID-19 on the US rare disease community, and touches on the current reality and potential problems…
Opinion Jessica Scott, Takeda’s head of R&D patient engagement, highlights how a better understanding of the value of patient engagement across the healthcare stakeholder spectrum will drive better health outcomes and why keeping an open and curious mindset is crucial in this endeavour. By incorporating Patient Engagement (PE) into the…
USA Peter L Saltonstall, president and CEO of the US National Organization for Rare Disorders (NORD) shares the organization’s key priorities, what makes NORD a unique patient advocacy group in the US, prevailing access and affordability issues for American rare disease patients, and how the country should continue to incentivize a…
USA US healthcare is often seen as a fragmented system of contrasts. The country has the highest healthcare expenditures as a percentage of GDP and the highest drug prices in the OECD, supporting the largest and most innovative healthcare market globally. However, it also has shockingly subpar healthcare outcomes compared to…
USA Marc Boutin, JD, CEO of the National Health Council (NHC),* introduces the organization and its mission to provide a united voice for the 160 million people in the US living with chronic diseases and disabilities and their family caregivers. He addresses the challenge faced by patients living with chronic diseases…
IFPMA Earlier this month, the International Federation of Pharmaceutical Manufacturers & Associations (IFPMA) issued new guidance for the pharmaceutical industry on how it interacts with patients and patient organisations, with the aim of safeguarding patient interests across the world. When money or resources are involved in interactions, we must at…
China PharmaBoardroom sat down with more than 25 biotech CEOs in China in 2019. We analyzed the contents of the interviews and found the following recurring themes at the top of these executives’ minds. “Patients” One recurring theme throughout the interviews was a stated commitment to patients. Many of these…
Czech Republic Jan Škrha, president of the Czech Diabetes Society (ČDS), provides insight into the most crucial advances in the quality care of Diabetes, which relies on the indispensable cooperation between specialists and General Practitioners (GPs). Škrha puts a strong emphasis on the importance of early diagnosis and discusses the underestimated role…
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