NYS ADVOCACY

Dear Lupus Warriors-

Make your Voices' Heard on Lupus legislation in New York State
and help to get these critical lupus bills passed this year!

The following bills are being reviewed by the Ways & Means
Committee in the NYS Assembly and the Finance Committee
of the NYS Senate. Please reach out to as many as you
can by phone or email.

Two Key Lupus Bills

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 is in the Assembly Ways & Means Committee

· Senate Bill S05216 is in the Senate Finance Committee

2. Taxpayer Gifts Bill - Provides for taxpayer gifts for lupus
education and prevention, and establishes the lupus
education and prevention fund and outreach program.

· Senate Bill S00553 is in the Senate Finance Committee

· Assembly Bill A02581 has passed in the Assembly,
this Bill 
provides for a taxpayer check-off to establish
voluntary donations to help fund lupus education,
prevention, and outreach programs.

What you can do –

For Bills in the Assembly

E-mail or phone your Assembly Member – find them here.

Tell them why this bill is important to you as a person
with lupus or friend or family member.

Ask them to please support A03072, the Lupus Education
and Outreach Bill
, and help move it forward. Thank you.

Also E-mail or phone members of the
Assembly Ways & Means Committee and ask them
to please support
A03072, the Lupus Education
and Outreach Bill.
Thank you.

For Bills in the Senate

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

Tell them why these bills are important to you as a person
with lupus or friend or family member.

Ask them to support S05216, the Lupus Education and
 Outreach Bill,
and S00553, the Taxpayer Gifts Bill
 
and help move them forward. Thank you.

Contact members of the Senate Finance Committee and
 ask them to support
S05216 the Lupus Education and
 Outreach Bill and
S00553 the Taxpayer Gifts Bill
and help move them forward. Thank you.

Please contact as many members of the Assembly
Ways & Means Committee and the Senate Finance
 Committee as you have time for and thank you for
making a difference in the NYS Lupus Community.

Please share with your networks and on Twitter and Facebook.

Use hashtags: #LupusAwarenessNY2016 and #PassLupusBills

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

Biologic medications are critical for treating many chronic,
disabling, 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.