ADVOCACY IN ACTION

The Lupus and Allied Diseases Association (LADA) supports

initiatives that address barriers to healthcare access in order
to ensure individuals receive the most appropriate therapies 
as directed by their treating healthcare professionals 
and consistent disease management is preserved.  
We strongly support establishing essential patient protections 
that improve access to vital therapies; in turn reducing the 
physical and economic impact of disease, improving outcomes, 
and allowing individuals to lead more productive lives.

LADA'S POSITION & SUPPORT DOCUMENTS

Biologic Communication to NYS Governor
Non-Medical Switching in NYS
Lupus Research Enhancement in NYS
Mail Order Prescription Choice In NYS
Step Therapy to NYS Governor
Lupus Education to NYS Governor
Access to Medical Care
Medicare Part B Drugs Proposed Payment Plan
Biosimilars Naming to FDA
Biosimilars Guidance to FDA
Biosimilars Naming to WHO
Medicare Proposed Changes for Protected Drug Classes
Biosimilars Naming Guidance to FDA 


GROUP EFFORTS LADA SUPPORTS

I Am Essential Response to HHS' RFI to Improve Outcomes
Labor-HHS FY 2018 302 (b) Appropriations
ATAP PBM Transparency
PDUFA & BsUFA Reauthorization
Protect Medicare D Program

I Am Essential Patient Protections
Market Stabilization to HHS
MAPRx to CMS
High Out-of-Pocket Costs to Congress
Part B Access for Seniors and Physicians (ASP) Letter 

STATE ADVOCACY 


LADA Advocates Lisabeth Iglesias, David Arntsen, Kathleen
Arntsen & Stephanie Darwak met with NYS Senate Majority
Leader John Flanagan (center) in the state capitol on
May 3rd to discuss critical access to care issues.



Thank You for Taking a NY Minute and
Making Your Voices Heard



NYS ADVOCACY

Thank you for making your Voices' Heard on Lupus
legislation in New York State and helping to get this 
 critical lupus bill passed this year! We also thank Senator
Diane Savino and Assemblywoman Crystal Peoples-Stokes 
for sponsoring our bills and fighting to get them passed.

Lupus Education and Outreach Bill - Creates an education 
and outreach program for the autoimmune disease known 
as lupus; provides for an advisory council consisting of 
representatives of people with lupus and their families 
and health care providers who specialize in treating lupus.

· Assembly Bill A03072 

· Senate Bill S05216


Step Therapy Reform Bill

The Step Therapy / First Fail Legislation introduced by Senator
Catharine Young S 3419-C and Assemblyman Matthew Titone A 2834-D
passed unanimously in both the Senate and Assembly in June.  
This bill regulates Step Therapy protocol and provides a 
clear and concise override process for health care
providers to follow
.  The Bill link is below.  
The bill was signed into law On December 31, 2016 by
Governor Cuomo. W
e appreciate the support of the
many patient advocacy and professional organizations
who advocated tirelessly to get these bills passed.

Click Here for the bill text

Media Coverage on Advocacy Efforts

Lupus News Today Article

ACR Article on advocacy victory

Step Rally Video

Step Rally Article

Arntsen Op-ed

GHLF & LADA Advocates met with Step Therapy Bill Sponsors
Assemblyman Matthew Titone and Senator Catharine Young 
to discuss A2834/S3419 on March 1st 



 Sarah Oanan, Lisabeth Iglesias, Assemblyman Titone, Senator Young, 
Kathleen Arntsen & Steve Marmaras overlooking the NYS Senate Chamber.
 

IMPORTANT MULTI-STATE ACCESS ISSUE

Lupus and Allied Diseases Association Vice President 
Sandi Frear wrote an op-ed on the insurance practice of bait 
and switch that ran in the Tampa Bay Times December 23rd.

  
Click for Sandi's Op-ed

THE POWER OF ADVOCACY

Kathleen Arntsen, President and CEO of Lupus and Allied Diseases 
Association, participated in a video project through the Patients 
for Biologics Safety and Access (PBSA) to promote the power 
of advocacy. The overview listed her as "a powerful national 
patient advocate from New York living with multiple autoimmune 
 diseases, including lupus. She works with other patient advocates 
to make their voices heard in vital patient safety policy discussions." 


Click Here for Video


FEDERAL ADVOCACY
 

 


Urge Congress to Ensure Access
to Critical Treatments

Specialty medications including biologics are critical
for treating many rare, chronic, complex, life-diminishing,

and life threatening conditions. However, some
health insurance companies are limiting patients’ ability
to access these treatments by placing them in “specialty tiers”
that require patients to pay up to 50 percent of drug costs
rather than a traditional fixed co-payment. This causes patients’
out-of-pocket costs to skyrocket to hundreds or even thousands
of dollars per month for a single medication.

The bipartisan Patients' Access to Treatment Act (H.R. 1600)
would limit patient cost-sharing requirements for specialty tier
drugs and make necessary medications more accessible
by reducing excessive out-of-pocket expenses.


CONTACTING YOUR LEGISLATOR

Click Here to find your state or federal legislator


Patient Advocates Travel to DC




Federal Step Therapy Reform



President Kathleen Arntsen had the honor of meeting with
Representative Brad Wenstrup on May 25th to share her
personal step therapy story and help hand deliver a group
letter in support of HR 2077 Restoring the Patient's Voice
Act of 2017. Dr. Wenstrup co-sponsored the bill with
Representative Raul Ruiz, who is also a physician.
 

BIO Legislative Fly-in



New York BIO Members meeting with Morgan Brand
from Senator Schumer's office to discuss R & D issues
impacting New Yorkers on April 5, 2017.

BIO Patient Advocacy Summit
 

NIH Director Francis Collins (center) with LADA President 
Kathleen Arntsen (left) and Board Member Lisabeth Iglesias
(right) at the  BIO Patient Advocacy Meeting in November 2016
in Washington, DC. They attended sessions to current research 
initiatives and health care access issues.




LADA Board Member Lisabeth Iglesias pictured with Brian O'Connor
from BIO and Elizabeth Kennerly from the Mitochondrial Foundation


Advocates for Arthritis September 2016



Arthritis Advocate Mary Judge (left) and Kathleen 

Arntsen (right) attended the ACR's Annual Advocacy 
Fly-in September 12-13 pictured here with Morgan Brand 
(center) from Senator Charles Schumer's office



Advocates in the Senate Subway at Capitol Hill



Congressman Chris Collins

FDA Director Janet Woodcock