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, 

NYS ADVOCACY

Dear Lupus Warriors-

Thank you for making your Voices' Heard on Lupus
legislation in New York State and helping to get these
 critical lupus bills passed this year!

Key Lupus Bill

1. 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

To Contact Assembly Member – find them here.

For Bills in the Senate

E-mail or phone your Senator – find him/her here..

Please click here to contact your public officials to 
voice concerns about issues that are important 
to you and your loved ones. Become part of the 
solution and be proactive in improving health care. 
Thank you very much.


 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.


Please Take a NY Minute and
Make Your Voices Heard



New York State Advocacy

We are thrilled to share the following NYS legislation with you.  Here
is the Step Therapy/First Fail Bill introduced by Senator
Catharine Young S 3419-B and Assemblyman Matthew Titone A 2834-C.  We are
hopeful that we can all help NYS Legislators to see the benefits of this
legislation and lend their support to move it forward to become law.  It
will be our job to get the word out to as many patient and professional
societies to provide support for this important legislation.

This bill regulates Step Therapy protocol and provides a 
clear and concise override process for health care
providers to follow; basically giving the prescribing 
physician back their power.  The Assembly Bill link is below.  
Please share this with other groups.  
Let's get this bill passed and signed into law this session!  
As always we appreciate your support.


NYS ADVOCACY ON STEP THERAPY PROTOCOLS


Kathleen Arntsen speaking at the step therapy press
conference in May about her personal experience 
with 
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.

http://www.twcnews.com/nys/capital-region/capital-tonight-interviews/2015/05/28/step-therapy-panel-052815.html

http://www.timesunion.com/news/article/Lawmakers-patients-call-for-curbs-to-step-6292617.php#photo-8061942


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 


ADVOCACY EVENTS


SWHR Autoimmune Briefing


LUPUS AWARENESS MONTH AND
ADVOCACY IN NEW YORK STATE

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.