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The Leukemia & Lymphoma Society - National Health · PDF fileThe Leukemia & Lymphoma Society ... fuel our efforts through direct lobbying and advocate mobilization. ... • New network

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Page 1: The Leukemia & Lymphoma Society - National Health · PDF fileThe Leukemia & Lymphoma Society ... fuel our efforts through direct lobbying and advocate mobilization. ... • New network
Page 2: The Leukemia & Lymphoma Society - National Health · PDF fileThe Leukemia & Lymphoma Society ... fuel our efforts through direct lobbying and advocate mobilization. ... • New network

The Leukemia & Lymphoma Society

The Leukemia & Lymphoma Society (LLS) exists to find cures and ensure access to treatments for blood cancer patients.

LLS is the voice for all blood cancer patients.

We fund research to advance more breakthrough therapies.

We advocate for blood cancer survivors and their families, helping patients navigate their cancer treatments and ensuring they have access to quality, affordable and coordinated care.

Page 3: The Leukemia & Lymphoma Society - National Health · PDF fileThe Leukemia & Lymphoma Society ... fuel our efforts through direct lobbying and advocate mobilization. ... • New network

LLS Brings The Entire Ecosystem Together

Patients

Academic

Research

Biopharma

FDA

Health

Care

Professionals

Third-Party

&

Government

Payors

LLS

Research

Therapy

Acceleration

Advocacy Access

Provider

Programs

Patient Programs

and Support

Page 4: The Leukemia & Lymphoma Society - National Health · PDF fileThe Leukemia & Lymphoma Society ... fuel our efforts through direct lobbying and advocate mobilization. ... • New network

Why Invest in State Government Affairs?

Page 5: The Leukemia & Lymphoma Society - National Health · PDF fileThe Leukemia & Lymphoma Society ... fuel our efforts through direct lobbying and advocate mobilization. ... • New network

Benefit Design - Lead Oral Parity Out of Pocket Caps (Specialty Tiers)

ACA Implementation – Lead Transparency Network Adequacy Anti-Discrimination

Coverage Issues – Lead Right to Treatment

Utilization Management - Support Prior Authorization Step Therapy

2015 State Government Affairs Key Issues

Page 6: The Leukemia & Lymphoma Society - National Health · PDF fileThe Leukemia & Lymphoma Society ... fuel our efforts through direct lobbying and advocate mobilization. ... • New network

Office of Public Policy

Sharon Ladin, Executive Director, Advocacy

Jon Hoffman, Senior Manager, Advocacy

Eight Advocacy Managers (Field Based)

Lisa Nelson, VP, Government Affairs

Four State Government Affairs Directors (Field

Based)

Brian Connell

Senior Director, Federal Affairs

Bernadette O'Donoghue, Executive

Director, Policy & Regulatory Affairs

Ernest Voyard, Senior Director,

Regulatory Affairs

Anne Gutch, VP, Mission Operations

Jen Turner, Director, Mission Operations

Ana Franco, Administrative Assistant

Page 7: The Leukemia & Lymphoma Society - National Health · PDF fileThe Leukemia & Lymphoma Society ... fuel our efforts through direct lobbying and advocate mobilization. ... • New network

LLS Patient Government Affairs and Advocacy National Coverage

Alaska

Hawaii

WA

OR

ID

MT

UT

NV

CA

AZ

IN

SD

ND MN

IA

MO

IL

WI MI

OH

WY

CO

NM

TX

OK

KS

NE

AR

LA

MS

KY

TN

AL GA

SC

FL

NC

VA WV

PA

MD DE

NY

ME

NJ

VT NH

CT RI MA

* Region Mission Director

LLS Government and Advocacy is divided into six regions, most of which include both a Government Affairs Director and one or more Advocacy Managers. Our agenda is driven by policy direction from our Washington DC Office of Public Policy.

Page 8: The Leukemia & Lymphoma Society - National Health · PDF fileThe Leukemia & Lymphoma Society ... fuel our efforts through direct lobbying and advocate mobilization. ... • New network

• The LLS Government Affairs & Advocacy team partners with our 53 local chapters to tap into our most powerful resource: patient advocates.

• Government Affairs & Advocacy Team members each cover regional territories and fuel our efforts through direct lobbying and advocate mobilization.

Government Affairs & Advocacy Roles

Page 9: The Leukemia & Lymphoma Society - National Health · PDF fileThe Leukemia & Lymphoma Society ... fuel our efforts through direct lobbying and advocate mobilization. ... • New network

LLS had some key regulatory and legislative wins on patient access issues during 2014 state legislative sessions.

Highlights:

• Governor Brown signed a transparency bill into law in California this September which requires not only direct links to formularies but also requires the development of a standard template by which carriers must publish drug coverage information, including cost sharing information.

• Maryland and Louisiana joined a handful of other states to provide per prescription per month co-pay caps on specialty drugs.

• New network adequacy regulations in Washington State set strict adequacy standards and helped lead the way for national action on adequacy.

LLS Wins in the States

Page 10: The Leukemia & Lymphoma Society - National Health · PDF fileThe Leukemia & Lymphoma Society ... fuel our efforts through direct lobbying and advocate mobilization. ... • New network

LLS co-leads two state focused coalitions that have important roles to play in the national coordination on state issues amongst VHAs:

• NHC State Working Group – Founded by the NHC in Fall 2014, Co-Chaired by LLS & Arthritis Foundation.

– Focused on ACA implementation at the state level including transparency & anti-discrimination.

• State Access to Innovative Medicines (SAIM) Coalition: – Founded in June 2014 by LLS & Co-chaired by Arthritis Foundation.

– Includes patient, provider and industry partners

– Focused on legislation to limit patient out of pocket costs and limit utilization management practices that could harm patients.

Coalition Leadership on State Issues

Page 11: The Leukemia & Lymphoma Society - National Health · PDF fileThe Leukemia & Lymphoma Society ... fuel our efforts through direct lobbying and advocate mobilization. ... • New network

LLS Brings The Entire Ecosystem Together

Patients

Academic

Research

Biopharma

FDA

Health

Care

Professionals

Third-Party

&

Government

Payors

LLS

Research

Therapy

Acceleration

Advocacy Access

Provider

Programs

Patient Programs

and Support

Page 12: The Leukemia & Lymphoma Society - National Health · PDF fileThe Leukemia & Lymphoma Society ... fuel our efforts through direct lobbying and advocate mobilization. ... • New network

Thank you