S.L.E. Lupus Foundation Goes to Albany for Lupus Awareness Day

Lupus Agencies of NYS Loop in State Officials on Lupus:

S.L.E. Lupus Foundation Joins in for Lupus Advocacy

The S.L.E. Lupus Foundation was in good company last week advocating for lupus legislation in Albany among other members of the national Lupus Research Institute that comprise the Lupus Agencies of New York State (LANYS).  The six members of the LANYS gathered for the 4th Annual Lupus Awareness Day in the NYS Capital sponsored by Assemblywoman Vanessa L. Gibson and Senator Joseph Griffo.  The Lupus Awareness Day aims to help promote awareness and educate New York State’s elected policymakers, state agency officials, health care professionals, and the general public about the disease lupus and the need for greater program support including research to develop better diagnostic tests and safer, more effective treatments; and ultimately, discover the cure to eradicate this devastating disease.

Assembly and Senate Call for Lupus Awareness Month in NYS
Both the New York State Assembly and Senate passed resolutions memorializing Governor Andrew Cuomo to proclaim May 2012 as Lupus Awareness Month in New York State.  The Legislative sponsors, numerous other legislators, and speakers spoke during a public presentation in the Legislative Office Building Well followed by an official presentation in both the Senate and Assembly Chambers and an afternoon press conference.   As advocates, we are continuing to petition the Governor for a proclamation.

Pending Legislation for Advocacy Support
If passed, additional current legislation supported by the LANYS should significantly impact the lives of people with lupus. New York State Assembly Speaker Sheldon Silver and Assemblywoman Gibson announced the passage of legislation in the Assembly that is now before the Senate that provides funding to support efforts in lupus education, prevention, and outreach.  The measure A 7896 would create a taxpayer check-off in support of lupus education and prevention, and establish the lupus education and prevention fund and outreach program to increase public awareness of this serious condition.  Senator Kemp Hannon is sponsoring the Bill S 5721-A in the Senate. Read more: http://www.assembly.state.ny.us/Press/20120510/

In addition, Assemblywoman Gibson described another priority, currently passed in the Assembly and pending in the Senate for Bill A 459 to create an advisory council in NYS Health Department on lupus.  The Advisory Council would be comprised of representatives of people with lupus, their families and health care providers who specialize in treating lupus.  The Bill S 5114 was introduced in the Senate by Senator Diane J. Savino.

Gerard Conway, Esq., Sr. Vice President of the Medical Society of the State of NY (MSSNY) called for support in passing the Step Therapy/First Fail Bill A 9397 / S 6464 introduced by Senator Catharine Young and by Assemblyman Matthew Titone that would amend current insurance law to put patient care back in the purview of the healthcare provider.  The Bill would regulate first fail accident/or health insurance policies that require a patient to exhaust the least expensive drug options before insurers will cover more expensive treatment options and provides a clear and concise override process for health care providers to follow.

Our colleague, Kathleen Arntsen, President and CEO of the Lupus Foundation of Mid and Northern New York gave an eloquent address to legislators and their staff, advocates, and the public supporting these important pieces of legislation. The audience was visibly moved when she described lupus as “swimming in shark-infested waters.”  Arntsen noted the critical need for greater public and medical professional awareness of lupus to promote early diagnosis, which is vital in reducing the physical and economic impact.  She said, “The establishment of an advisory council will allow patients, family members and health professionals to work with state agencies to achieve better outcomes for those most affected.  Lupus is complex and treatment is highly personalized.  An individual’s treatment should be decided in partnership with one’s healthcare professional, not by insurance companies looking to save money.”

The LANYS was formed by six agencies banding together to advocate for lupus patients throughout New York. Members are:
Lupus Foundation of Mid and Northern New York, Inc.
Lupus Foundation of Genesee Valley NY, Inc.
S.L.E. Lupus Foundation
Lupus Alliance of America, Long Island/Queens Affiliate
Lupus Alliance of America, New York Southern Tier Affiliate
Lupus Alliance of America, Upstate NY Affiliate


Assemblywoman Ellen Jaffee, Assemblywoman Annette Robinson, Honi Kurzeja, LAA, UNY, Yasmin Santiago SLE, Assemblywoman Vanessa Gibson, Kathleen Arntsen LFMNNY, Julie Mersereau G Valley, Diane Gross SLE, Senator Betty Little
Back 2 rows are my LFMNNY Board Members except Joann Quinn LI/Queens (why are you back there JoAnn) and Jackie Barry from G Valley (very center pink top)

Kara Moran, LAA, NYST Affiliate; Honi Kurzeja, LAA, UNY Affiliate; Julie Mersereau, LFGVNY; Senator Joseph Griffo; Kathleen Arntsen, LFMNNY; Assemblywoman Vanessa Gibson; Senator Catharine Young; Assemblywoman Ellen Jaffee; JoAnn Quinn, LAA, LI/Queens Affiliate; David Arntsen, LFMNNY; Diane Gross, SLE Fdn; Assemblyman Matthew Titone

Front Row-Senator Diane Savino; Assemblyman Matthew Titone; Assemblywoman Vanessa Gibson;
Back Row-Pauline Ziatts, LAA, NYST; JoAnn Quinn, LI/Queens; Yasmin Santiago, SLE; Dale Bullock, LFMNNY; Honi Kurzeja, UNY; David & Kathleen Arntsen, LFMNNY; Kathy & Phil Teague, LFMNNY; Julie Mersereau, GV; Gerard Conway, Esq. Medical Society of the State of NY