Day 2: Resetting the Future of FoCUS
8:00am– 1:30pm

8:00 – 9:00am
Networking breakfast

9:00 – 9:15am
Welcome and Frame the Day
Mark Trusheim

9:15 – 9:55am
Quantifying the Burden of Disease to Tailor Precision Financing Payment Innovations for Sickle Cell Disease & Beyond
Tsega Meshesha, Diane Nugent, Lisa Nugent, and Tina Park

10:00 – 10:45am
Medicaid and Medicare analysis with recommended policy asks
Colin Young

10:50 – 11:30am
Toolkit Demonstration
Karen Geary

11:30 – 1:00pm
Shaping Precision Financing & Reimbursement to meet evolving needs
Gigi Hirsch & Mark Trusheim

1:00 – 2:00pm
Networking Lunch
(To-go available)

Raj Arora
Sr. Director, Horizon Scanning and Payer Innovation
Sanofi

Jane Barlow
Senior Advisor, NEWDIGS
MIT FoCUS Project

Amber Batata
Global head of Market Access & Strategic Pricing,
Sanofi

Kim Caldwell
Principal
Texas Star Healthcare Consulting, LLC

Brian Carey
Partner
Foley Hoag LLP

Sara Castegini
Associate Director, Government Affairs and Policy
bluebird bio

Sung Hee Choe
Senior Director
Milken Institute

Michael Ciarametaro
VP Research
National Pharmaceutical Council

Francesca Cook
VP, Pricing and Market Access
REGENXBIO

Terry Cothran
Senior Pharmacy Director
Oklahoma Health Care Authority

Lucas de Breed
Founder and Managing Director
August Care

Thomas Dow
VP Business Development
Emerging Therapy Solutions

Stephanie Farnia
Principal
Nimitt Consulting

Lauren Feldman
Group Director, Innovative Contracting
Janssen

Diana Frame
Founder
Frame Research, LLC

Karen Geary
Senior Consultant, MIT FoCUS
MIT

John Glasspool
Senior Advisor, FoCUS Project 
MIT

Abhi Gupta
Senior Director, Global Gene Therapy
Pfizer

Michelle Harika
Chief Clinical Officer
Equity Healthcare, LLC

Brendan Hayes
Director of Education - Innovative Therapies
National Hemophilia Foundation - New York, NY

Gigi Hirsch
Executive Director, NEWDIGS
MIT

Dorothy Hoffman
External Engagement and Access Policy Lead
Pfizer

Tom Hubbard
Vice President of Policy Research
NEHI The Network for Excellence in Health Innovation

Ashley Hume
Vice President Strategic Partnerships
Emerging Therapy Solutions

Paul Jeffrey
Consultant
Jeffrey Consulting

Keith Kennerly
Founder and CEO
PayRx, Inc.

Kollet Koulianos
VP Payer Relations
National Hemophilia Foundation

Nan Li
Director, Global Market Access
Janssen

Tsega Meshesha
Program Manager, FoCUS Project
MIT

John Meyer
Director
Novartis Gene Therapies

Erin Muller
Associate Director, Market Acc Strategy & Policy
BioMarin

Julie Murray
Executive Director, North America Market Access
BioMarin

Deepna Nandiga
Associate Director, Policy and Alliances
Vertex Pharmaceuticals - Boston, MA

Trung Nguyen
Director, Contract Strategy and Operations
Novartis Gene Therapies

Eric Norman
Communications Consultant
Hopewell

Lisa Nugent
Design Director
Sickle Cell Disease Foundation

Awo Osei-Anto
Director
FasterCures

Tina Park
Partner
Diagram

Ed Pezella
CEO/Consultant
Enlightenment Bioconsult, LLC

Cindy Pigg
Senior Vice President, Commercial Market Leader
Aon

Casey Quinn
Senior Research Advisor, FoCUS Project
MIT

Brian Ragan
Director, Pharmaceutical Manufacturer Relations
Humana Pharmacy Solutions

Gail Ryan
Director, Pharmaceutical Transformation
Point32Health

Susan Serrano
Associate Director, US Market Access
bluebird bio

Eric Small
Senior Administrative Assistant, NEWDIGS
MIT

Sam Stolpe, PharmD, MPH
Senior Director, Healthcare Quality Strategy
Janssen

Katie Torrence
Project Coordinator, FoCUS Project 
MIT

Mark Trusheim
Strategic Director, NEWDIGS
MIT

Claire White
Administrative Manager, Cell Therapy 
The Children's Hospital of Philadelphia

Brooks Wildasin
AVP
CareMetx/OutcomeRx

Kristin Wolff
Vice President, Payer Engagement & Access
bluebird bio

Durhane Wong-Rieger
President & CEO
Canadian Organization for Rare Disorders

Yoojung Yang
Senior Director, Health Economics & Outcomes RSRCH
Vertex

Colin Young
Director, Drug Development Pipeline Research, FoCUS Project
MIT

Frank Zhang
Head Of Commercial
uniQure

Chatham House Rule

The Chatham House Rule is used in meetings where participants need a way to openly share information, but don't want to be identified as the source of that information in any meeting records or articles written afterward. The rule is invoked regularly in meetings dealing with sensitive topics. It reads:

“When a meeting, or part thereof, is held under the Chatham House Rule, participants are free to use the information received, but neither the identity nor the affiliation of the speaker(s), nor that of any other participant, may be revealed.”

Antitrust Compliance Statement

Issued March 9, 2017

MIT's Center for Biomedical Information (CBI) spearheads initiatives focused on re-engineering drug development and delivery processes to optimize access to new medicines for patients while ensuring the sustainability of pharmaceutical innovation. Many of these initiatives involve cooperation among various constituencies, including pharmaceutical companies and other industry stakeholders, patient advocates, healthcare payers, and academic and research institutions.

Because competitors or potential competitors in the marketplace are often participating in the same initiatives, participants in CBI activities must take care to stay within antitrust boundaries.

The antitrust laws prohibit firms from entering into agreements and engaging in arrangements with competitors that are “anticompetitive” -- meaning that they reduce competition more than they advance it. The antitrust laws, however, support and encourage “procompetitive” agreements and arrangements that increase efficiency, enable and improve innovation, and increase the availability of higher quality, lower cost goods and services. CBI’s initiatives are designed to facilitate “procompetitive” processes.

This Statement provides antitrust guidance to MIT personnel and to the representatives of companies and other institutions who participate in CBI activities with the goal of encouraging and ensuring antitrust compliance. Even for specially trained experts, it can sometimes be difficult to distinguish “anticompetitive” from “procompetitive” outcomes. This Statement articulates General Antitrust Principles that guide differentiation of various interactions and lists Specific Antitrust Guidelines to enhance the procompetitive nature of CBI activities and reduce the risk of any inadvertent violation of the antitrust laws. CBI asks all participants in CBI activities to follow the General Antitrust Principles and to adhere to the Specific Antitrust Guidelines. The Principles and the Guidelines are intended to be conservative – meaning that they will prohibit some conduct that the antitrust laws may allow – in order to provide a reasonable safety margin for everyone.

General Antitrust Principles

1. Be “antitrust aware”, including in your emails, documents, and conversations. This means remembering that no CBI activity is intended to reduce competition or create undesirable “anticompetitive” effects. These undesirable effects include increased market power, higher prices, lower quality goods or services, and the creation or strengthening of obstacles to innovation.

2. Part of being “antitrust aware” involves recognizing and memorializing, when appropriate, the desirable “procompetitive” effects that flow from cooperative exploration and innovation. These effects include faster rates of innovation, greater efficiency, increased output, lower prices, and higher quality goods and services. Documents and meeting agendas that identify those positive effects create a helpful contemporaneous record of the participants’ procompetitive vision, which can be consulted later.

3. Note that preserving a particular company’s or group of companies’ prices, profit margins, or position in an industry is not a legitimate goal, particularly in the dynamic industries involved in CBI’s activities. All companies are expected to succeed on their own merits and not because they have created obstacles to competition. The law establishes one important exception – patent holders possess a temporary, completely legal monopoly as their reward for innovation. A patent holder, acting alone, is entitled to use the legal system to exclude rivals from practicing the subject of the patent.

4. “Market power,” meaning the ability of a single company or group of companies to control the price or availability of goods and services, is rarely permissible under antitrust laws. The acquisition or use of market power is tolerated where it results from superior products, services, or business skill, but otherwise it is highly suspect. No CBI activity that makes economic sense only if it creates or intensifies market power for the participants (other than through the eventual assertion of patent rights) should be undertaken without first consulting CBI's compliance contact.

5. Other countries have their own competition regimes, and some of those regimes operate quite differently from the United States’ antitrust laws. Recognizing that much of CBI’s work may affect the global marketplace, CBI intends to comply with competition laws in all countries where its work has local effect. This Compliance Statement addresses the fundamental principles that are common to the competition regimes in the United States and the European Union. If you believe a CBI activity is likely to have a significant, negative economic effect on a company outside of the United States or European Union, please raise that issue with CBI's compliance contact.

Specific Antitrust Guidelines

1. Do not reach any of the following types of agreements with a competitor: agreements affecting the price at which goods or services are sold in competition; agreements allocating customers or markets among competitors; or agreements not to deal with any company or organization.

2. Do not discuss with a competitor information concerning any of the following: your company’s or your competitors’ prices, costs, discounts, terms of sale, or profit margins or anything else that might affect those prices; the resale prices your customers should charge for any products you sell them; markets, customers, territories, or products sold in competition; whether or not to deal with any other company or organization; or any other competitively sensitive information concerning your company or a competitor. In addition, do not share non-public data concerning these topics with a competitor.

3. Do prepare and follow an accurate agenda, even if only in summary form, for meetings attended by representatives of two or more direct competitors.

4. Do consult with CBI’s antitrust compliance contact before proceeding in any area of uncertainty. The compliance contact does not provide legal advice. When needed, the compliance contact will obtain legal advice for MIT participants from MIT’s Office of the General Counsel. All non-MIT participants must consult their own counsel for legal advice.

5. Do recognize that the antitrust laws encourage cooperation among competitors for the legitimate, procompetitive purposes envisioned by CBI. A more detailed look at this complex area may be found in the United States’ Antitrust Guidelines for Collaborations among Competitors, found here.