Contacting Your Elected Officials

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.




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
Catherine Young S 2711 and Assemblyman Matthew Titone A 5214.  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.

http://assembly.state.ny.us/leg/?default_fld=&bn=A05214&term=2013&Summary=Y&Actions=Y&Votes=Y&Memo=Y&Text=Y


Patient Advocates Travel to Capitol Hill

Lupus Foundation of Mid and Northern New York
President/CEO Kathleen Arntsen and Program Director
 
Sandi Frear attended the
LRI National Coalition Training & 
 Senate Briefing in Washington, DC on March 18 & 19, 2013



Lupus Foundation of Mid & NNY Advocates Kathleen Arntsen
and Sandi
Frear with Devon Siebert (center) from Congressman
David McKinley's office. (R-WV) 

(Congressman McKinley is the sponsor of HR 460
Patients' Access to Treatments Act of 2013)

http://thomas.loc.gov/cgi-bin/query/z?c113:H.R.460.IH:



LFMNNY Advocates with Congressman Richard Hanna (R-NY)  

Make Your Voices Heard!

The 1.5 million Americans with lupus were heard loud and clear
on Capitol Hill on March 20th
Lupus Foundation of Mid and
Northern NY volunteers were among the dozens of advocates
from the Lupus Research Institute’s (LRI) National Coalition that
converged on Capitol Hill for appointments with more than 50 federal
legislative offices in Washington, DC.  We effectively conveyed
the most critical lupus-related issues to our legislators.

You may not have been with us in person, but everyone touched
by lupus was there in spirit. We were proud to give voice to
people with lupus on the Hill, and gratified that we were heard.
But now we need your help to ensure that Congress keeps listening.

Click here to learn how to reach your local representatives
with our united message.  Here’s what we’re calling for:

All Representatives to Join New Congressional Lupus Caucus

We strongly urge you, our Representatives on the Hill, to join
the new Congressional Lupus Caucus
as an important step
in raising awareness of lupus among patients, healthcare
professionals and researchers.

Strengthened Biomedical Research at the NIH

The Lupus Research Institute National Coalition urges
Congress to strengthen the nation’s biomedical research
enterprise
by
increasing funding level to at least
$31.3 billion in fiscal year 2014.

Reduced Health Disparities in Lupus


The Lupus Research Institute National Coalition requests
that Congress provide the HHS Office of Minority Health
budget
with $2 million in the Fiscal Year 2014
Labor/HHS
Appropriations Bill to continue a new nationwide
lupus education program for healthcare professionals
called The Lupus Initiative.


URGENT ADVOCACY ISSUES

PLEASE TAKE ACTION TO ENSURE COVERAGE OF BENLYSTA® FOR NEW YORKERS

Empire BCBS in NYS is now requiring a SLEDAI (Systemic Lupus Erythematosus Disease Activity Index) disease measurement that is not considered standard of care as part of pre- authorization, and is also requiring patients to fail first on 10 mg of prednisone for at least 30 days before Benlysta® can be approved for treatment.  This is a form of step therapy and if we do not stop this now all future treatments could be subjected to the same requirements and this could expand to all NYS Insurance Companies if Empire succeeds with this policy.  Max Hamburger, MD, President of the NYS Rheumatology Society and I are asking everyone in the NYS Lupus community to write e-mails and letters to the Medical Director of Empire BCBS voicing your concerns over this "step therapy" practice.  Here is the e-mail address for the Empire Medical Director, Scott Breidbart.

scott.breidbart@empireblue.com

First briefly state how lupus has impacted your life or that of someone you know. 

Here are some bullet point examples for you to use in your messages.  

  • It is ridiculous that the lupus community waited over 5 decades for a new lupus treatment and now that Benlysta® is finally approved for SLE we must overcome another barrier before lupus patients can receive the drug.
  • Only health care professionals familiar with a patient's personal medical history should be making treating decisions in the best interest of their patient; not insurance companies basing treatment decisions on cost only.
  • Lupus is heterogeneous; no two patients are alike.  Health providers know best what treatments to use to balance therapeutic & safety concerns in complex lupus patients.
  • Forcing patients to take 10 mg of prednisone first and fail as a step before their physician can prescribe Benlysta® is absurd.  Anyone who has ever taken prednisone knows the side effects and complications that can arise.  Most of us struggle for years to get off prednisone; tapering down even 1 mg at a time requires extreme diligence.
  • Not everyone can take prednisone and in some individuals it can do more harm than good.
  • The determination of the most appropriate medical treatment is best accomplished by open and transparent communication between health care provider and patient.  If a physician prescribes Benlysta® for a patient they should receive it without further delay.   

Please share with your friends and relatives and post to your Facebook & Twitter pages.  The goal is to get as many e-mails sent to Mr. Breidbart as possible so he understands how upset the NYS lupus community is about the Empire BCBS policy.  Thank you for participating in this important campaign.  Please contact me if you have any questions.


PLEASE TAKE ACTION TO SUPPORT COVERAGE OF BENLYSTA IN THE UK

As a result of a recommendation by the National Institute for Health and Clinical Excellence (NICE), lupus patients in the United Kingdom may be unable to gain coverage for and afford treatment with Benlysta®. The Lupus Foundation of Mid and Northern NY along with other members of the Lupus Research Institute National Coalition have passionately advocated for newer, safer, and more effective lupus therapies for years. Finally in March, Benlysta® was approved by the U.S. Food and Drug Administration as the first new treatment in over 50 years; therefore we are now in support of global campaigns for all lupus patients to have access to the best treatments available. 

With the successful approval of Benlysta® here in the United States came a source of renewed hope for the 1.5 Americans with lupus, and we are extremely proud to have played a role in this effort. Now is the time to bring that same aspiration to the millions affected by lupus throughout the world that may also benefit from this treatment. 

Please take a moment and click here http://www.thepetitionsite.com/1/cover-Benlysta/
to add your voice to the thousands petitioning NICE to recommend that the United Kingdom's National Health Service provide coverage of Benlysta®. Help us extend our lupus loop all the way across the “pond!” Thank you very much for your continued support.

Warmest regards-

Kathleen A. Arntsen
President/CEO
Lupus Foundation of Mid and Northern New York, Inc.
315-829-4272
lupusmidny@aol.com



ADVOCACY EVENTS


Lupus Foundation of Mid and Northern New York
President/CEO Kathleen Arntsen attended the
NIAMS Coalition Meeting in Bethesda, MD on
October 10 & 11, 2011.  While there she traveled to
Capitol Hill to present a Patient Perspective at the Society
for Women's Health Research Congressional Briefing,
The War Within:  Women and Autoimmunity



Patient Advocate Kathleen Arntsen (center) pictured with
fellow presenters Dr. Annette Rothermel, PhD,
Program Officer at the Autoimmunity and Mucosal
Immunology Branch at the National Institutes of
Allergy and Infectious Diseases (NIAID) (left) and
SWHR President & CEO Phyllis Greenberger, MSW (right)
at the Briefing on October 11, 2011.


Lupus Foundation of Mid & NNY led the charge
on a statewide effort to protect patients
regarding the NY State Medicaid Budget Proposals

Advocacy Video




LUPUS AWARENESS MONTH AND
ADVOCACY IN NEW YORK STATE

On Wednesday, April 28, 2010 all 7 Lupus Agencies
of New York State came together in Albany, NY
and sponsored the 2nd Annual Lupus Awareness & 
Advocacy Day in the Legislative Office Building (LOB) 
Ground Floor Well.  Lupus Legislative Champions
Assemblywoman RoAnn Destito, Senator Joe Griffo,
Senator Diane Savino, Senator Betty Little, Assemblywoman
Crystal Peoples-Stokes, and Assemblywoman Vanessa Gibson 
gave remarks. Other exhibitors included Scleroderma Foundation,
National Kidney Foundation, Sjogren's Syndrome
Foundation, AARDA, Arthritis Foundation, Partnership for
Prescription Assistance, Pfizer Helpful Answers, Community
Health Charities of NY, and International Institute of
Human Empowerment.  We thank the legislators and
their staff, organizers, exhibitors, lupus leaders, advocates, 
volunteers, and speakers for their support in this initiative and look
forward to the 3rd Annual Awareness Day on May 4, 2011!



Assemblywoman RoAnn Destito as Prime Assembly
Sponsor of the Resolution declaring May as Lupus
Awareness Month in NY State gives remarks at
the April 28, 2010 Lupus Awareness Day In Albany.


Senator Joseph Griffo as Prime Senate
Sponsor of the Resolution declaring May as Lupus
Awareness Month in NY State gives remarks.


Senator Diane Savino, Co-Prime Senate Sponsor
of the Resolution declaring May as Lupus
Awareness Month in NY State and sponsor of
pending lupus legislation gives remarks at the
awareness event. 


Senator Betty Little, Co-Prime Senate
Sponsor of the Resolution declaring May as Lupus
Awareness Month in NY State gives remarks.


Assemblywoman Crystal People-Stokes, Co-Prime 
Assembly Sponsor of the Resolution declaring May
as Lupus Awareness Month in NY State gives remarks.


Assemblywoman Vanessa Gibson, Co-Prime Assembly
Sponsor of the Resolution declaring May as Lupus
Awareness Month in NY State and sponsor of
pending lupus legislation gives remarks.


ACR/ARHP Annual Advocates for Arthritis Event
Washington, DC February 24-25, 2008



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.