Lupus Advocates in New York Cheer Passage of Bills Advancing Disease Education and Access to Treatment

Ines Martins, PhD avatar

by Ines Martins, PhD |

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legislation and lupus

The Lupus Agencies of New York State (LANYS) announced two advocacy triumphs this legislative session — passage of the Lupus Education and Outreach Bill and a bill revising Step Therapy protocols — in both the state Senate and Assembly. If signed by Gov. Andrew Cuomo, the bills will become law in New York.

Advocates with the agencies have been working with state lawmakers for the past eight years on key issues of concern to lupus patients, especially educational and public awareness programs and access to care as determined by step therapy, an insurance company-issued protocol requiring patients to try cheaper medications before coverage is granted to ‘step up’ to prescribed drugs. According to a Lupus New York news release, drug sequences in these protocols can be determined by the insurer based on cost and  on treatment expectations using a generalized patient population, rather than a specific patient’s medical profile or a physician’s assessment of best treatment options.

Lupus Awareness Day 2015 in NY state

New York State Sen. Diane Savino, in pink blouse, and Sen. Joseph Griffo with advocates on Lupus Awareness Day in 2015. (Credit: Lupus and Allied Disease Association)

“Americans know less about Lupus than almost every other disease. Not only is there public misconception, but there is no identifiable cause or cure, and it can take years to diagnose,” Sen. Diane Savino said in the release. “An Education and Outreach program created by the NYS DOH [state Department of Health] 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. I … look forward to the Governor signing it into law.”

The Lupus Education and Outreach Bill will launch a Department of Health (DOH) program across the New York State to promote knowledge of lupus’ causes and consequences, and to provide for an education program focused on minority populations and vulnerable communities. The program will also feature an advisory council, including lupus patients, advocates and clinicians, to work with DOH. Its ultimate aim  is to improve the lupus patients’ quality of life.

The bill limiting step therapy protocols is described as “practical, pro-consumer” legislation that includes guidelines to improve the safety and efficacy of these protocols while allowing their use.  It would ensure that protocols cannot be driven solely by cost and are grounded on documented, evidence-based and peer-reviewed clinical criteria that also takes into consideration the needs of atypical patients and diagnoses. In addition, the bill requires a clear and quick process  allowing prescribers to request an override of a step protocolto better ensure that people with life-threatening illnesses can access needed medications in time.

Lupus advocates at the New York State capital

Assemblyman Matthew Titone and Sen. Catharine Young, center, with advocates in the Senate chamber. (Credit: Lupus and Allied Disease Association)

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

“I am also ecstatic that parameters have been placed on step therapy protocol that will allow me, as a physician who is educated and ethically bound to treat to the uniqueness of a patient, to do just that and prescribe the most appropriate therapies,” he said.

“We applaud and thank Senator Diane Savino and Assemblywoman Crystal Peoples-Stokes for sponsoring the Lupus Education Bill and Senator Catharine Young and Assemblyman Matthew Titone for sponsoring the Step Therapy Bill, as well as the many legislative champions who helped to get them passed,” Kathleen A. Arntsen, LANYS’ spokesperson, said in the release. “If this legislation can prevent another person like me from being harmed, then it is a triumph. We certainly hope that Governor Cuomo will sign both of these bills into law.”