New York Lupus Advocates Celebrate Legislative Victory for Education and Outreach Law

Ines Martins, PhD avatar

by Ines Martins, PhD |

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The Lupus Agencies of New York State (LANYS) recently announced another victory after Gov. Andrew Cuomo signed into the law the Lupus Education and Outreach Bill.

The new legislation will bring essential lupus education to the public and to health professionals. The bill was passed unanimously in June by the New York State Senate and the state Assembly.

Advocates have visited the State Capital in Albany each May (New York State Lupus Awareness Month) for the past eight years to increase public awareness of lupus and to gather support for improving education programs, diagnostic tests and making treatments more effective, with the ultimate goal of finding a cure for the disease.

The Lupus Education Outreach Bill creates a statewide program within the Department of Health (DOH) to increase public understanding of the causes and consequences of lupus. The bill provides for an education program with a special emphasis on minority populations and at-risk communities.

“An education and outreach program created by the NYS DOH will help to put lupus on the radar of patients, family members and healthcare providers, which will ultimately lessen the physical, emotional and economic impact for those affected,” state Sen. Diane Savino said in a press release. “I commend the governor for signing it into law and applaud Kathleen Arntsen and the many passionate lupus advocates for their tireless efforts in getting this bill passed, and thank Assemblywoman Crystal Peoples-Stokes for sponsoring this important legislation with me.”

The bill also establishes an advisory council of individuals with lupus, advocates, and clinicians who will collaborate with the Department of Health on the program.

“As a rheumatologist it is difficult to diagnose and frustrating to treat an individual with a heterogeneous and unpredictable disease such as lupus,” said Max Hamburger, MD, president of the New York State Rheumatology Society.

“Having a statewide education program that promotes public and health provider awareness will result in earlier diagnosis and treatment which are vital components in diminishing the physical impact of lupus,” he said, thanking Cuomo for making the bill a law “to improve the health of New Yorkers.”

LANYS is a group of organizations dedicated to improving the lives of people living with lupus and their loved ones by providing education, support and outreach services, and also promoting collaborative awareness, advocacy and research programs.

The group includes the Lupus and Allied Diseases Association, Lupus Alliance of Long Island/Queens, Lupus Alliance of Upstate New York, Lupus Foundation of America, Lupus Research Alliance, and Lupus Friends and Family Foundation.