Paying for Cures research, publications, and media

The FoCUS consortium has been working since 2016 to identify challenges and design solutions for financing innovative cell and gene therapies, involving the perspectives of diverse system stakeholders.

Publications

Moradian, R., Meshesha, T., Trusheim, M., & Barlow, J. F. (2024). Payer and Developer perspectives on alternative payment models. Expert Review of Pharmacoeconomics & Outcomes Research, 24(2), 293–301. 

Quinn, C., Ciarametaro, M., Sils, B., Phares, S., & Trusheim, M. (2023). Medicaid best price reforms to enable innovative payment models for cell and gene therapies. Expert Review of Pharmacoeconomics & Outcomes Research, 23(2), 191–203.

Young, C. M., Trusheim, M., & Quinn, C. (2022). Data for modelling US projections of product approvals, patients treated, and product revenues for durable cell and gene therapies. Data in Brief, 41, 107891.

C. Young; C. Quinn; M. Trusheim. Durable cell and gene therapy potential patient and financial impact: US projections of product approvals, patients treated, and product revenues. Drug Discovery Today (2021). DOI: 10.1016/j.drudis.2021.09.001

Ivica NA, Young CM. Tracking the CAR-T Revolution: Analysis of Clinical Trials of CAR-T and TCR-T Therapies for the Treatment of Cancer (1997–2020). Healthcare. 2021; 9(8):1062.

J.F. Barlow; M.W. Courtney; M. Trusheim. Payer Perspectives on Gene Therapy Reimbursement. Pharmaceutical Executive, 04/2020

J.F. Barlow; M.W. Courtney; M. Trusheim. Payer Perspectives on Reimbursement of One-Time High-Cost Durable Therapies. Pharmaceutical Executive, 01/09/2020

J.F. Barlow; M. Yang; R. Teagarden. Are Payers Ready, Willing, and Able to Provide Access to New Durable Gene Therapies? Value in Health, 06/2019, 10.1016/j.jval.2018.12.004

J. Barlow; R. Teagarden; M. Trusheim. Precision Financing of Durable, Potentially Curative Therapies. Pharmaceutical Executive, 01/2019

M.R. Trusheim; W.M. Cassidy; P.B. Bach. Alternative State-Level Financing for Hepatitis C Treatment—The "Netflix Model" JAMA, 10/29/2018, 10.1001

D. Han; D.S. Mytelka; G.L. Warren; M. Ciarametaro; M. Trusheim. Improving Management of Gene and Cell Therapies: The Orphan Reinsurer and Benefit Manager (ORBM). PharmaExec.com, 2018

M.R. Trusheim; A.A. Shrier; Z. Antonijevic; R.A. Beckman; R.K. Campbell; C. Chen; K.T. Flaherty; J. Loewy; D. Lacombe; S. Madhavan; H.P. Selker; L.J. Esserman. PIPELINEs: Creating Comparable Clinical Knowledge Efficiently by Linking Trial Platforms. Clinical Pharmacology & Therapeutics, 2016, 10.1002/cpt.514

R. Teagarden; T.F. Unger; G. Hirsch. Access and availability of orphan drugs in the United States: advances or cruel hoaxes? Expert Opinion on Orphan Drugs, 2014, 10.1517/21678707.2014.947265

In the media

April 2024
Better Outcomes Tracking: A First Step In Improving Access To New Treatments
Health Affairs Forefront

November 2023
Value creators or financial destroyers? The potential of gene therapies to transform healthcare
STAT

April 2023
A payment innovation framework to meet the urgent need in advanced therapies
Cell & Gene Therapy Insights

January 2023
Medicaid best price reforms to enable innovative payment models for cell and gene therapies
Expert Review of Pharmacoeconomics & Outcomes Research

May 2022
Aligning Contracting to Solve for Payer Risks Is a Win for Biopharma, Payers, and Patients
Pharmaceutical Executive

February 2022
Contributed to Breakthrough Cures, Blockbuster Costs: Future Directions
Aspen Institute

January 2022
Durable cell and gene therapy potential patient and financial impact: US projections of product approvals, patients treated, and product revenues
Drug Discovery Today

October 2021
Reality Check? Medicaid Costs From Cell, Gene Therapies Projected At (Just) $1Bn-$4Bn By 2030 
Pink Sheet

15 September 2021
Medicaid Best Price Volatility Could Inhibit Payment Innovation
Health Affairs Blog

May 2021
NEWDIGS research was cited in "The use of innovative payment mechanisms for gene therapies in Europe and the USA" by Jesper Jørgensen and Panos Kefalas in Regenerative Medicine.

March 2021
Cell and gene therapy: Overview, Current Landscape and Future Trends
The Journal of Precision Medicine

9 December 2020
Gene Therapy Shows Promise for a Form of Blindness, but Is It a Cure? Study of treatment for an inherited form of vision loss raises pricing questions for drugs with long-term benefits
Wall Street Journal

Innovative payment models to support cell and gene therapies on the rise
MedCity News

24 November 2020
Market access of gene therapies across Europe, USA, and Canada: challenges, trends, and solutions
Science Direct: Drug Discovery Today

July 2020
NEWDIGS comment on CMS Proposed Rule supporting Value-Based Purchasing (VBP) (CMS-2482-P) (Download the entire comment)

8 April 2020
Payer Perspectives on Gene Therapy Reimbursement
Pharmaceutical Executive

17 March 2020
U.S. Should Buy Coronavirus Vaccines Before They’re Invented
Bloomberg

February 2020
Gene Therapy: Cures, Risks and Opportunities
Mellon Double Take Podcast

30 January 2020
Managing Uncertainty In Drug Value: Outcomes-Based Contracting Supports Value-Based Pricing
Health Affairs

9 January 2020
Payer Perspectives on Reimbursement of One-Time High-Cost Durable Therapies
Pharmaceutical Executive

12 November 2019
Pharma Panel Grapples With Drug Pricing, Real-World Evidence, and Creating Headroom for Innovative Therapies
Center for Biosimilars

5 September 2019
Insurers Pitch New Ways to Pay for Million-Dollar Therapies
Wall Street Journal

August 2019
Unlocking market access for gene therapies in the United States
McKinsey Insights

23 July 2019
A Need for Precision Financing Methods for Precision Medicines
Going Below the Surface (National Pharmaceutical Council)

15 July 2019
Paying for high-cost drugs like you’d pay a mortgage–and with strings attached
Managed Care

June 2019
Are Payers Ready, Willing, and Able to Provide Access to New Durable Gene Therapies?

18 June 2019
MIT Group Brings Together Stakeholders to Brainstorm How to Pay for Curative Therapies Over Time
American Journal of Managed Care

3 June 2019
Sticker Shock From Breakthrough Therapies Pressures Medicare
Bloomberg Law (registration required)

The Effective Medicaid Pharmacy Program: A White Paper for Medicaid Directors and State Agency Personnel
NESCSO

23 May 2019
New Therapies Offer Possible Cures but Pose Affordability Challenges
American Journal of Managed Care

17 May 2019
Gene Therapies Force Payment Innovation
Specialty Pharmacy Continuum

17 May 2019
Commentary: Novartis CEO: Gene therapy offers hope of cures in one treatment, but US needs new pricing and payment model
CNBC

22 April 2019
When a Treatment Costs $450,000 or More, It Had Better Work
The Atlantic

15 April 2019
Biologics Are Natural Monopolies (Part 1): Why Biosimilars Do Not Create Effective Competition
Biologics Are Natural Monopolies (Part 2): A Proposal For Post- Exclusivity Price Regulation Of Biologics
Health Affairs

15 April 2019
Peter Bach’s latest crazy idea: Give up on biosimilars. Regulate drug prices instead
STAT News

4 April 2019
Value-based agreements could disrupt how we pay for new therapies
STAT News

19 February 2019
Paying for Cures: Ensuring Patient Access and System Sustainability
National Pharmaceutical Council E.V.I.dently Today

19 February 2019
Annuity Payment Model For Cures May Get Test Drive In Massachusetts
Pink Sheet

13 February 2019
Examining New Payment Ideas for Curative Therapies
American Journal of Managed Care

12 February 2019
MIT Releases New Policy and Practice Suggestions to Make Cures Accessible and Sustainable
NEWDIGS Initiative at MIT

12 February 2019
Preparing Patients and the Health System for Curative Therapies in the Pipeline
American Journal of Managed Care

1 February 2019
Focusing on Cures: Payers, Manufacturers, Patients and Academics Are Piloting Financing Options for Curative Therapies
BioCentury

27 January 2019
Precision Financing of Durable, Potentially Curative Therapies
Pharmaceutical Executive

10 January 2019
Louisiana adopts ‘Netflix’ model to pay for hepatitis C drugs
Washington Post

8 January 2019
Biotech Proposes Paying for Pricey Drugs by Installment
Wall Street Journal

19 December 2018
Are Orphan Reinsurance and Benefit Managers the Future of Financing High-Cost Therapies?
AJMC In Focus Blog

20 November 2018
Alternative State-Level Financing for Hepatitis C Treatment—The “Netflix Model”
JAMA Network

14 November 2018
A Search For New Ways To Pay For Drugs That Cost A Mint
NPR

10 September 2018
Improving Management of Gene and Cell Therapies
Pharmaceutical Executive

4 September 2018
Innovating Payment Models For Gene Therapy
First Report Managed Care