Neal Patel

Weill Cornell Medicine, New York NY, USA; Department of Urology, Institute of Urologic Oncology, University of California, Los Angeles, CA, USA

Aileen Arevalo

David Geffen School of Medicine, University of California, Los Angeles, CA, USA

Peter Muraki

Department of Urology, Institute of Urologic Oncology, University of California, Los Angeles, CA, USA

Shinji Ohtake

Department of Urology, Institute of Urologic Oncology, University of California, Los Angeles, CA, USA

Gennady Bratslavsky

Urology Department, SUNY Upstate Medical University, Syracuse, NY, USA

Chandra Clark

VHL Alliance, Boston, MA, USA

Joshua Mann

VHL Alliance, Boston, MA, USA

Othon Iliopoulos

Center for Cancer Research, Massachusetts General Hospital Cancer Center, Harvard Medical School, Boston, MA, USA

Eric Jonasch

Department of Genitourinary Medical Oncology, MD Anderson Cancer Center, Houston, TX, USA

Ramaprasad Srinivasan

Urologic Oncology Branch, Center for Cancer Research, National Cancer Institute, Bethesda, MD, USA

Brian Shuch

Department of Urology, Institute of Urologic Oncology, University of California, Los Angeles, CA, USA

Keywords

VHL, clear cell renal carcinoma, medical therapy, belzutifan

Abstract

Belzutifan was recently approved for the management of Von Hippel–Lindau disease (VHL). Given the morbidity of recurrent treatment, systemic therapy to reduce or eliminate the need for surgery has been long-awaited. Herein, we sought to gain insight about future utilization by surveying VHL  experts in the United States. A survey developed by members of the VHL Alliance (VHLA) Clinical Advisory Council was distributed to kidney cancer providers at VHLA and National Comprehensive Cancer Network (NCCN) centers. Surveys were administered on a secure web-based platform. A total of 60 respondents from 29 institutions participated. Urologists (50%) and medical oncologists (43%) represented the majority of participants. The majority (98%) of respondents anticipated that belzutifan’s approval would signifi-cantly change the current treatment landscape. Most reported that therapy should be continuous (76%). There was a difference in willingness to prescribe belzutifan by specialty (38% of urologists vs 91% of medical oncologists (P = 0.02). In individuals with renal tumors <3 cm, 36% would still recommend surveillance, while 36% would initiate belzutifan to prevent growth. In those with multifocal renal lesions and growth of a solitary tumor on belzutifan, 50% would proceed with only treatment of that site. In conclusion, VHL kidney cancer specialists anticipate a paradigm shift with the approval of belzutifan. Provider roles may change with movement away from surgical management. Opinions on treatment indications, such as when to initiate therapy and how to best salvage, vary widely and collaborative efforts among experts may assist in the development of  clinical guidelines.

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