A New Program for Narcolepsy Patients
Caring Voice Coalition, Inc. (CVC), a non-profit organization that provides financial assistance and insurance advocacy for persons with specific chronic illnesses, is pleased to announce a new program to assist patients diagnosed with Narcolepsy.
Narcolepsy is a chronic sleep disorder characterized by excessive daytime sleepiness (EDS) in which a person experiences extreme fatigue and possibly falls asleep at inappropriate times, such as work or at school. Narcoleptics usually experience disturbed nocturnal sleep and an abnormal daytime sleep pattern, which is often confused with insomnia. Narcolepsy is often associated with cataplexy, a sudden loss of muscle tone often triggered by intense emotions, sleep paralysis and hypnogogic hallucinations. While medications often help to manage the signs and symptoms of Narcolepsy, there is currently no cure.
This announcement represents an expansion of CVC’s current programs which include Pulmonary Hypertension; Alpha-1 Antitrypsin Deficiency; Idiopathic Pulmonary Fibrosis; Chronic Granulomatous Disease; Complex Partial Seizures; Infantile Spasms and Huntington’s disease.
“CVC is very excited to offer this new program,” said Samantha Harris, Vice President of CVC. “We strive to improve the lives of our patients every day and look forward to expanding our assistance to the Narcolepsy Community.”
Tim Robertson, Senior Director of Patient Services, adds, “The rising costs of healthcare prevents many patients diagnosed with chronic illnesses from beginning or remaining on therapy. CVC’s new program will provide financial support to help qualified patients afford the out of pocket costs related to their prescribed therapy for Narcolepsy.”
About the Caring Voice Coalition:
Caring Voice Coalition, Inc. (CVC)is a national 501(c)(3) non-profit, charitable organization established in 2003 to provide financial, insurance education and patient support to individuals diagnosed with specific chronic or life-threatening diseases. CVC seeks to empower these patients by providing comprehensive programs delivered through a holistic approach by a staff of knowledgeable, dedicated and caring individuals.
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12 Responses to A New Program for Narcolepsy Patients
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Is there any documented study done in which narcolepsy and alpha 1 antitrypsin deficiency are connected? ie: Is one related in any way to the other?
Janie,
Thank you very much for your question! I am unsure as to whether Narcolepsy and Alpha-1 Antitrypsin Defiency are interrelated.
But if I may, I would like to recommend a couple of resources that may be of help:
The Narcolepsy Network can provide additional information and can be reached through their website (www.narcolepsynetwork.org) or by telephone (888-292-6522).
In addition, the Alpha-1 Association may also be able to provide additional details. They can be reached at 800-521-3025 or http://www.alpha1.org.
Please let us know if CVC can be of service with additional questions that you may have! We can be reached at 888-267-1440 or via e-mail at info@caringvoice.org.
Have a wonderful day,
Jean
I have Narcolepsy and struggle paying for my prescriptions on a month to month basis,I also have no health insurance, live on my own and solely support my self, but am barely just getting by.I was curious as to what type of assistance do you provide for Narcoleptic patients…???
Hello Cassie,
Thank you very much for contacting CVC! We are happy to explore your needs and review possible options for assistance.
To more easily facilitate the process, you may either fill out a financial application through our website or call us, toll-free, at 888-267-1440. A Case Manager will be happy to walk you through the process and answer any questions that you may have.
Our website also has a “live chat” feature that you are welcome to use. The button can be found at the top of any of our web pages.
We look forward to speaking to you soon!
Warmest regards,
Jean
I was recently diagnosed with Narcolepsy w/ Cataplexy. I work full time and have health benefits, but my insurance co-pay is still $250 for each medication I take (Xyrem and Provigil) that’s half my monthly income just on medicine! I’ve yet to find a program that can assist the insured who are struggling? Can this program do that? I want to be able to drive to work without feeling like I’ll wreck, or to go through the day like a normal person without needed to sleep every hour. I’m frustrated and tired and stressed about how I can barely afford to survive. Please help.
Victoria,
We are glad that you have contacted CVC and are happy to review your situation in more depth. You are welcome to apply online via our application process or reach out to us by e-mail at info@caringvoice.org or by phone, toll-free at 888-267-1440.
We look forward to speaking to you very soon!
Sincerely,
Jean
could you please let me know if there are many children who have been diagnosed with narcolepsy/cataplexy under the age of 5,and if so is there a outreach program for these children?
CVC does not have specific data regarding the number of children who have been diagnosed with narcolepsy/cataplexy under the age of 5. However, according to the Narcolepsy Network, a person can develop Narcolepsy at any age–with the typical onset being between 10-30 years of age.
I would direct them to the Narcolepsy Network, which is a national patient support organization. There are some great resources on their website such as message boards, educational materials and support groups that might be helpful to the individual who is asking this question. Their contact information is below:
Narcolepsy Network
888-292-6522
http://www.narcolepsynetwork.org
Please let us know if you need any additional information.
I am in school full time. Because of this I needed to quit my job and this resulted in a loss of my health insurance. I am paying out of pocket for narcolepsy meds but can’t afford the correct dose. I am having a more and more difficult time making it through daily activities and need help getting the correct meds …know of anyone who can help?
Kelly,
We encourage you to check out our website to read more about how we help individuals. Please go here: http://www.caringvoice.org/2011/09/financial-assistance/
Then, you may apply for help here: http://www.caringvoice.org/2011/09/apply-for-help/
If you feel like talking to someone, please call us at (888) 267-1440 Toll-Free.
hello i just came across this trying to find more out about narcalepsy. i have had to deal with this sleeping disorder since i was 16 and im interested in getting a real diagnoses. i have had 3 different sleep studies since 1999. i wanna talk more to a professsional that knows more about narcalepsy. thanks for your time…
Hi Donna and thank you for the message. We strongly recommend visiting Narcolepsy Network ( http://www.narcolepsynetwork.org/resources/find-a-sleep-center ) where you can find specialists and facilities close to you and to check for or evaluate the qualifications and certifications of these providers and their staff. You can also visit Wake Up Narcolepsy, Inc ( https://www.wakeupnarcolepsy.org/ ) for more information on Narcolepsy.
We wish you nothing but the best. Please let us know if we can do anything else to help.
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