  On October 25,
2003, Loredana Nasta, president of the Italian Interstitial Cystitis Association (AICI),
gave a presentation about IC and MICA to the 13th National Urogynecology meeting held in
Paestum, Italy. She told the 300 urologists and gynecologists who attended the meeting
about interstitial cystitis, its epidemiology, potential causes, and current treatments.
Loredana also spoke about the difficulty patients have in getting the diagnosis of IC,
proper treatment, and the need for more research. She described the formation of IC
patients’ associations, including the Interstitial Cystitis Association (ICA),
associations in Europe and Asia, and MICA, to increase awareness, support patients, and
fund scientific research.In 1999, Loredana helped
found AICI and Uniamo, the Italian Rare Diseases Federation. AICI and Uniamo have helped
defend the rights of those with rare diseases by helping stimulate research and
encouraging production of orphan drugs. Their activism helped establish European Rule
141/2000 art.9, which allows 10-year market franchises and tax relief for European
pharmaceutical companies that make orphan drugs. AICI and Uniamo’s activism also
spurred Italy’s Ministry of Health to approve Ministerial Decree 279, which
officially establishes a national system that will help develop strategies for increasing
awareness, prevention, diagnosis, and therapy, and reduce costs for patients with rare
diseases. It also established the |
Rare Diseases
Registry in the Higher Institute of Health, to gather statistics on the prevalence,
incidence, and risk factors for several rare diseases. The decree defines 47 groups of
diseases, including 284 pathologies, with the aim of no-cost medical examinations for
patients, promoting common diagnostic and therapeutic protocols, and improving knowledge
through research. IC is recognized in the decree in the list of "free-cost
diseases." Growing activism, interest, and
research in Italy have been echoed in other countries and are bringing about collaboration
of IC patients and healthcare professionals throughout the world. The need for worldwide
collaboration helped bring about the formation of MICA in 2003 and stimulated worldwide
research. A pan-European epidemiologic study has been planned, and efforts to develop
worldwide diagnostic standards are under way.
MICA hopes to achieve increased awareness and education
about IC for both the public and healthcare professionals. It is also working with
governments to recognize IC as a disability. Loredana expressed her hopes that all these
activities will give stronger incentives for research to cure this disease that is so
difficult for both physicians and patients to manage.
A summary of Loredana’s presentation,
"Interstitial Cystitis and the Urogynecological Rare Diseases: Topicality and
Prospects," was published in the conference proceedings. |
MICA Founding Member and
AICI President Tells Italian Specialists about IC Research, Activism
