NEW YORK, April 27 (AScribe Newswire) -- Narcolepsy Network Inc., announced to its members today that Abbott Laboratories will cease production of Cylert, a medication used by an estimated 10,000 Americans afflicted with the sleep disorders of narcolepsy and idiopathic hypersomnia. In an untreated state, both of these disorders are characterized by excessive sleepiness and sleep attacks during the day. At the same time, Public Citizen's Health Research Group, on behalf of individuals with ADHD, has petitioned the FDA to ban Cylert and its generic equivalent, Pemoline, due to risks associated with this medication.
In 1975, Cylert was approved by the FDA for the treatment of one medical condition: attention deficit hyperactive disorder (ADHD). But it has also been legitimately prescribed off label since that time to many adult patients with narcolepsy/idiopathic hypersomnia who cannot tolerate any other stimulant medications due to coexisting conditions such as hypertension and/or cardiovascular/cerebrovascular disease. In addition, a separate subset of patients has found that Cylert/Pemoline works better for them than any of the alternatives.
In a statement today, Sharon Smith, President of Narcolepsy Network, said, "Even with treatment, narcolepsy limits patients in every aspect of their lives. A ban on Pemoline will have a tremendously negative impact on those narcolepsy patients who cannot tolerate other agents. Tolerance levels for risk associated with a medication are tied to the existence of alternatives and the consequences foregoing treatment. Without a medication to relieve excessive daytime sleepiness, these patients will no longer be able to function well enough to continue their present daily activities. No life event is as devastating and far-reaching as the loss of one's ability to function. A ban on Pemoline will force individuals to resort to disability. They and their family members will suffer the economic consequences of a significantly reduced income and loss of medical and retirement benefits. Others will no longer be able to achieve sufficient wakefulness to accomplish the ordinary tasks essential to independent living and will become burdens to their families, the Social Security, Medicare and Medicaid Systems and to society in general. The ADHD population has many alternative medications from which to choose."
Smith urges those with disorders of excessive sleepiness, especially those who take brand or generic Pemoline, to call the Network toll-free at 1-888-292-6522 to obtain the names and addresses where they can send letters about their experience with Pemoline in order to preserve this medication option.
"We should all write letters," she says, "to let them know that there are usages for Pemoline other than ADHD, and to insist they not leave individuals with narcolepsy and idiopathic hypersomnia in the intolerable situation of having no treatment at all. Everyone needs to write. If we don't, we have only ourselves to blame."
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CONTACT: Eveline Honig, 914-741-5680; evelinevvh@optonline.net
Narcolepsy Network is a non-profit organization which
represents over 200,000 Americans with narcolepsy and
idiopathic hypersomnia. Narcolepsy is a life-long disorder,
with symptoms usually presenting in adolescence, and
diagnosis usually delayed until the second or third
decade. Even with treatment, narcolepsy limits patients in
every aspect of their lives.
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