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, 

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


Dear Advocacy Warriors-

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.  
We are hopeful that the bill will be signed into law by
Governor Cuomo soon. 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


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.


Kathleen Arntsen speaking at the step therapy press
conference in May about her personal experience 
step therapy/fail first protocol pictured with
fellow NYS patient advocates.

Click on the links below for the Capital Tonight show
video with Kathleen and other advocates and the Times
Union article on step therapy/fail first protocol and the 
advocacy efforts to promote awareness to change
the current insurance practice in the state.

Senator Diane Savino and Senator Joseph
Griffo with NYS Lupus Advocates during
May Lupus Awareness Month in the Capitol

NYS Senator Kemp Hannon with LADA Advocates

Patient Advocates Travel to Capitol Hill

Congressman Richard Hanna 

Congressman Chris Collins

FDA Director Janet Woodcock

 Congressman Hanna with LADA Advocates 


SWHR Autoimmune Briefing


Lupus and Allied Diseases Association led the charge 
on a statewide effort to protect patients 
regarding the NY State Medicaid Budget Proposals

Advocacy Video

Proud Advocates Kathleen Arntsen & Sandi Frear
with Ann Kunkel (center) at the Advocates for
Arthritis Event.  Kathleen was the first recipient of the
ARHP Ann Kunkel Advocacy Award in November 2007 and
Sandi received it in October of 2009.