On Monday January 31, 2022, Knowledge Ecology International (KEI) Doctors Without Borders/Médecins Sans Frontières (MSF) USA, Doctors for America, the Drugs for Neglected Diseases Initiative, Professor Chris Morten of Columbia Law School, and 33 supporting organizations sent a letter to the Biden Administration calling for greater transparency of costs of all clinical trials funded through the Department of Health and Human Services (HHS).
While taxpayers foot the bill for clinical trials funded by HHS, there is a lack of transparency of those expenses. The letter sent Monday calls on the administration to provide detailed, disaggregated cost disclosures of the trials that it funds.
Increased transparency is also critical for developing effective reforms to the drug R&D system that increase affordable, equitable access to medicines for the public. Pharmaceutical companies often cite high R&D costs as the justification behind high drug prices, but detailed data about those costs is unavailable or withheld as business confidential information, and thus those claims cannot be fact-checked.
HHS funds billions of dollars of medical R&D annually, and through supporting research at federal labs and universities, provides the funding for most early stage medical R&D. The government has the data on how that funding is spent, and could require detailed public disclosures of that data, providing a detailed picture of the key costs involved in medical R&D and what is involved in bringing a treatment to market.
A full list of signatories follows below, and copy of the letter is available here: Open-Letter-Clinical-Trial-Cost-Transparency-31Jan2022
Doctors Without Borders/Médecins Sans Frontières (MSF) USA
Doctors for America
Drugs for Neglected Diseases initiative (DNDi), North America
Knowledge Ecology International
Christopher Morten, Associate Clinical Professor of Law, Columbia Law School
Co-signatories:
Adrian Dominican Sisters, Portfolio Advisory Board
Center for Policy Analysis on Trade and Health (CPATH)
Center for Popular Democracy
Chronic Illness Advocacy & Awareness Group
Consumer Action
Foundation for Integrative AIDS Research (FIAR)
Health Care Voices
Health Global Access Project
Interfaith Center on Corporate
Responsibility (ICCR)
Justice is Global
Lower Drug Prices Now
Maryknoll Sisters
Mercy Investment Services, Inc.
Network Lobby for Catholic Social Justice
Northwest Coalition for Responsible Investment
Oxfam America
Patients for Affordable Drugs Now
PrEP4All
Prescription Justice
Public Citizen
Right to Health Action
Salud y Farmacos
Sisters of Charity of Saint Elizabeth
Sisters of St. Francis of Philadelphia
Social Security Works
Socially Responsible Investment Coalition
T1International
Trade Justice Education Fund
Treatment Action Group
U.S. PIRG (Public Interest Research Group)
Seventh Generation Interfaith Coalition for Responsible Investment
Dr. Luca Li Bassi, MD, Dip Mgt, DPH; Global Health Adviser; Geneva, Switzerland; Former Director General of the Italian Medicine Agency (AIFA) 2018-2019 Chair of the Negotiating Group for WHA Resolution 72.8