We are small but mighty and march among giants! 




 
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.

We are actively engaged in advocacy at both the federal
and state levels to ensure that the patient voice is present
and heard. We confront healthcare access issues
as they arise, often taking the lead to organize efforts;
boldly inserting ourselves into the regulatory, legislative,
and research communities whenever necessary to
guarantee the patient stakeholder is included at the table



LADA'S POSITION & SUPPORT DOCUMENTS

Non-Medical Switching in NYS
LADA to CMS on Biosimilars
Biologic Communication to NYS Governor

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

Diagnostic Testing Reform Letter
I Am Essential Short-Term Plans Letter
CAT Access Letter
Partnership for Part D
AHRQ Appropriations Letter
ATAP to CMS Part D Rule
MAPRx to CMS Part D Rule
CHIP Support Letter
ATAP to E & C Committee
HR 2077 Step Therapy Support
ATAP CMMI Comments
SHIP Support Letter
I Am Essential Support Letter 
Medical Innovation Support Letter
ASP Coalition Letter
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

 
New York State Rheumatology, LADA and GHLF Advocates 
meet with NYS Senate Majority Leader John Flanagan (center)
on 
January 16, 2018 to discuss access to care legislation.



CSRO, NYSRS, LADA and GHLF Advocates pictured
with 
Assemblyman Felix Ortiz (center) on January 16th.



NYSRS and LADA Advocates pictured with Senator 
David Valesky (2nd from left) on January 16th.



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 vital 
 lupus and healthcare access legislation and helping
to get them passed and signed into law in New York
state over the last several years! We commend
our Legislative Champions Senator
Diane Savino
and Senator Kevin Parker and Assemblywoman
Crystal Peoples-Stokes
 for sponsoring our lupus bills
and working with us to get them over the finish line
.

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 

Lupus Awareness License Plate Bill - Relates to authorizing 
the creation of a lupus awareness license plate
and 
to creating the lupus research and education fund. 

Assembly Bill  A08087
Senate Bill  S01703 

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 2016.  
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

Lupus News Today Article
ACR Article on advocacy victory
Step Rally Video
Step Rally Article
Arntsen Op-ed
ChangeTogether Article
January Article

December Press Release 
MHANY Link
FAQ Guidance for Health Insurers on Law
Q & A on Law
Physician Form Requesting Review

 

GHLF & LADA Advocates met with Step Therapy Bill Sponsors
Assemblyman Matthew Titone and Senator Catharine Young and
are pictured below 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
 
 Kathleen also participated in the 2015-16 Patient 
Advocacy programs by sharing her 
perspectives. 

A link to the 2015 video interview is below.


Arntsen on Advocacy 
 
                          

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. 2999)
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




National Lupus Organizations Brought Purple
Inside The Beltway

The Lupus Research Alliance and the Lupus Foundation of America
held their annual advocacy events in Washington, DC during the
week of March 19, 2018. Lupus and Allied Diseases Association
President & CEO Kathleen Arntsen spoke at both organizations'
education programs on the 19th and 20th and along with other LADA
advocates visited legislative offices with LFA advocates from all
over the country on the 21st. Despite a blizzard closing down the
nation's capital, the LFA Advocacy Warriors and their purple capes
made it to the Hill for meetings and a Legislative Briefing.



LADA President & CEO Kathleen Arntsen speaking
on advocacy at the LFA Advocacy Summit



Lupus Superheroes at the LFA Advocacy Summit


LFA Advocacy Warriors on Capitol Hill


NYS Advocates meeting with Senator Gillibrand's Office


LADA Patient Advocate and Blogger Extraordinaire
Amanda Greene #LALupusLady outside the Capitol



NYS Advocates meeting with Senator Schumer's Staffer Morgan Brand (center)


LADA Advocate Elyse Reyes at the end of a very long and cold day


Amanda, Kathleen and Elyse in the Capitol Visitors' Center 


Lupus Advocates showing their Superhero pose at the LFA Legislative Briefing



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.

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


FDA Director Janet Woodcock