The Rhuematologist features "The Lupus Initiative," a national health care provider education initiative to improve lupus diagnosis, treatment, and management among minorities.
Lupus Organizations Around the Globe Urge NICE to Provide Coverage for Benlysta®
October 31, 2011
National lupus organizations in more than 28 countries, and individuals with lupus and their families around the world, are rallying to protect access to new treatments and the development of future therapies to treat lupus. Recently, the United Kingdom's (UK) National Institute for Health and Clinical Excellence (NICE) released its preliminary recommendation not to cover the cost of Benlysta®, the first drug developed and approved in more than 50 years for use in people with lupus. NICE’s preliminary recommendation would, in essence, deny physicians and patients a new treatment option for this complex and underserved disease.
The advent of Benlysta® represents several significant firsts for lupus, a life threatening and disabling disease with few approved treatments. Benlysta® is the first therapy specifically developed for lupus since the disease was first recognized in the mid 1800’s. It is the first to specifically address an important underlying pathology of this disease - current treatments for lupus only manage the symptoms and mitigate the consequences of the disease. It is the first to successfully complete two international Phase III clinical studies, which are the largest ever conducted for lupus.
Current treatments used in lupus, include chemotherapies, glucocorticoids, and anti-virals. Side effects for these treatments include bone loss and osteoporosis leading to joint replacements, loss of fertility, cardiovascular complications, vision loss, infections, and more. In addition, many of the commonly used lupus treatments were developed for and borrowed from other diseases and conditions, and never properly tested or approved for lupus.
“We urge NICE to consider the unique medical needs of people with lupus, and the impact of existing therapies used to manage lupus, as they prepare their final decision,” stated Sandra C. Raymond, President and CEO of the Lupus Foundation of America. “When evaluating the cost-benefit of Benlysta®, NICE must not ignore the lifetime costs of the disease related to the use of current therapies, including the costs for joint replacements, hospitalizations, rehabilitation, long term home care, physician visits, and additional medications resulting from the consequences of existing treatments.”
Patient advocates from 28 nations have banded together and sent a letter, spearheaded by LUPUS EUROPE, Lupus Foundation of America, and the St. Thomas’ Lupus Trust (UK), urging NICE to reverse its preliminary decision and recommend Benlysta® for coverage when they issue their final recommendation.
To bolster this effort, a worldwide petition has been launched and individuals with lupus, their families, and friends are urged to sign the petition (http://www.thepetitionsite.com/1/cover-Benlysta/). In less than two weeks, nearly 4,000 signatures have been garnered. The petition will remain online until a final NICE decision has been reached.
“We urge everyone touched by this disease to sign the petition and make their voices heard,” said Yvonne Norton, Chair of LUPUS EUROPE. “It is through personal experiences shared by people affected by lupus that we can further demonstrate the need for new, approved lupus treatment options for physicians and their patients.”
The following lupus organizations have signed onto the letter:
Arthritis Victoria (Australia)
Asociación de Lupicos de Asturias (Spain)
Asociación Galega de Lupus (Spain)
Asociacion Leonesa de Lupus y Sindrome Antifosfolipido (Spain)
Asociación Lupus Argentina (Argentina)
Asociación Lupus de Cantabria (Spain)
Associació Catalana de Lupus E.G (Spain)
Association Lupus érythémateux, asbl (Belgium)
Asociacion Lupus Sonora IAP (Mexico)
Federación Española de Lupus (Spain)
Lupus Cyprus (Cyprus)
Lupus Canada (Canada)
Lupus Europe, representing:
- Malta GC
- United Kingdom
Lupus Foreningen i NRF (Norway)
Lupus Foundation of America, Inc. (United States)
Lupus Foundation of Jamaica (Jamaica)
Lupus Foundation of Ontario (Canada)
Lupus Foundation of the Philippines, Inc. (Philippines)
Lupus France (France)
Lupus Inspired Advocacy/Rheumatology Educational Trust Foundation, Inc (Philippines)
Lupus New Brunswick (New Brunswick, Canada)
Lupus Patienten Groep (The Netherlands)
Lupus Society of Alberta (Alberta, Canada)
Lupus SK Society Inc. (Saskatchewan, Canada)
St. Thomas’ Lupus Trust, UK (United Kingdom)
Syamsi Dhuha Foundation (Indonesia)
Lupus is an acute and chronic autoimmune disease in which the immune system is out of balance, causing inflammation and tissue damage to virtually any organ in the body. Lupus can be unpredictable and potentially fatal. An estimated 1.5 million Americans and at least five million people worldwide have a form of lupus. Its health effects include heart attacks, strokes, seizures, miscarriages, and organ failure.
About LUPUS EUROPE
LUPUS EUROPE currently has 21 member countries (23 member Groups). Through a presence at European and International Congresses, LUPUS EUROPE is able to raise the profile of lupus within the medical profession and to provide a platform for the voice of the lupus patient to be heard. National Groups are encouraged to exchange ideas of support for lupus patients in different countries and all unite during World Lupus Day (10th May) to endeavour to make lupus better-known worldwide. For further information please visit: www.lupus-europe.org.
About the LFA
The LFA is the foremost national nonprofit health organization dedicated to finding the causes of and cure for lupus, and providing support, services, and hope to all people affected by lupus. The LFA and its national network of chapters, branches, and support groups conduct programs of research, education, and advocacy.
The New England Journal of Medicine published results from a long-term study for the treatment of lupus nephritis.