The Patient Voice & Patient-Focused Drug Development

Against all the odds, Oriana is now a 9-year small cell ovarian cancer hypercalcemic type (SCOCHT) survivor due to immunotherapy. She started her journey with cancer at age 22 and found that the first response from her providers was one of ignorance and even negligence. However, her obstinate attitude and her parents’ love enabled her to not give up; instead, she started to self-advocate. She went through several hospitals in her country and abroad, always focused on finding a cure. After four recurrences, she became, in 2015, the first patient with her type of cancer to try immunotherapy.

After seeing the results of the treatment, she gathered her courage and accepted a New York Times interview. Her goal was to not only be able to help more patients advocating for their treatments but also give visibility to her type of cancer and incite the medical community to look more closely at immunotherapy for rare cancer patients. She is trained as a Psychologist and, having in mind her personal life story, she feels the need to help others who are dealing with cancer. For that reason, she recently founded Dealing with Cancer, a website for online psychological appointments to support cancer patients, survivors and caregivers. She is currently a student of the Patient Expert Course at the European Patients’ Academy On Therapeutic Innovation (EUPATI), and she is proud to be a member of Rare 2030, a panel of patients, practitioners, and key opinion leaders that is proposing policy changes for rare disease patients across Europe.

Tamás Bereczky currently works as the Courses and Contents Coordinator of the European Patients’ Academy on Therapeutic Innovation EUPATI (www.eupati.eu), while also coordinating the national platform of EUPATI in Germany. HIV positive since 2003, he served as a member of the board of directors of the European AIDS Treatment Group (EATG) for almost 4 years, and also served as the co-chair of the European Commission’s Civil Society Forum on HIV/AIDS between 2013 and 2015; and has been involved in many E U and global projects. Tamás has been a member of the BMJ Patient Panel since 2017.

A linguist and psychologists, Tamás obtained a PhD based on research into the significance and perspectives of patient organizations in Europe in 2020. In addition to his work as a psychodrama practitioner, he also works as an advisor to several international and European institutions concerning HIV, HCV, men having sex with men, substance use, and health policy. Tamás lives with his partner in Berlin, Germany and is a proud grandfather.

Kathleen is the President & CEO of Lupus and Allied Diseases Association and has been a strong leader and patient advocate for the lupus, rheumatology and autoimmune communities for over thirty-four years. She also coordinates the Lupus Agencies of NYS and is a member of the Autoantibody Standardization Committee, the ALPHA Project Global Advisory Committee and numerous coalitions.

Kathleen has fought tenaciously to ensure that the patient voice is included as an equal stakeholder in the healthcare, regulatory and public policy arenas and across the research continuum. She has testified before the FDA, Congress, and various federal and state agencies, and is strongly committed to ensuring all Americans have access to the most appropriate and affordable healthcare. She served as the Lupus Patient Representative at the FDA and was the initiator and driving force behind the Lupus PFDD Initiative.

Kathleen’s work background and personal experiences have helped to shape her into one of the most powerful and unique advocates in the nation. She has received numerous awards for her efforts and is a graduate of Colgate University.

Begonya is the Patient Engagement & Research Coordinator at Sant Joan de Déu Children’s Hospital in Spain. She has deep experience in the field of patient and family involvement in research initiatives, especially in the area of pediatric clinical trials. Her personal story as a caregiver and patient advocate for her sister, a young adult with cerebral palsy, drives her commitment to achieving a better quality of life for pediatric patients through research and new treatments.

Begonya is a Fellow of EUPATI (first cohort), Coordinator of eYPAGnet (European Young Patients Advisory Group Network – www.eypagnet.eu), Coordinator of Kids Barcelona (YPAG of Sant Joan de Déu Children’s Hospital- www.kidsbarcelona.org), member of Children’s Medicines Working Party of EFPGCP, volunteer member of the Editorial Board of Center for Information & Study on Clinical Research Participation (CISCRP), reviewer of Research Involvement and Engagement Journal, Chair of the Educational Committee of ICAN (International Children’s Advocacy Network) and member of the Patients and Families working group of EnprEMA (European Network of Paediatric Research of EMA). She is coordinator of the cross-cutting theme of patient involvement in the Connect4Children project (pan-European paediatric clinical trials network), and a participant in the PARADIGM project, both funded by IMI.

She is also a coordinator of the Share4Rare project, funded by the European Commission, (H2020) which has the aim of developing a digital platform to improve research in the field of rare diseases through the collective intelligence of patients and families (www.share4rare.org).

Danielle is a healthcare communications strategist and leader with deep knowledge of the global biopharmaceuticals industry, pharmaceutical manufacturing and business operations as well as the overall healthcare environment. Builds and motivates high-performing teams to drive strategic internal communications, product communications and public relations, media relations, issues management, advocacy relations, patient education, stakeholder engagement and philanthropy programs. Creative business partner and persuasive leader with a proven track record of creating communications programs to drive success of primary and specialty care medicines and vaccines across a broad range of therapeutic areas.

Samit Hirawat, M.D., joined Bristol Myers Squibb in June 2019 as Chief Medical Officer, Global Drug Development.

Samit is a highly collaborative leader who brings extensive drug development experience to the role. Prior to joining Bristol Myers Squibb, Samit most recently served as Executive Vice President and Head of Oncology Global Development at Novartis. Samit also led clinical development programs in multiple indications at PTC Therapeutics and Pfizer/Pharmacia Corporation.

Samit received his Bachelor of Medicine and Bachelor of Surgery (M.B; B.S.) from the Sawai Man Singh Medical College in India and completed his Internal Medicine Residency and Medical Oncology Training at North Shore University Hospital, New York. He is an author of several manuscripts and abstracts published in peer-reviewed journals and presented at major conferences. Samit is a recipient of several government grants, academic and corporate awards.