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Rare Disease Awareness
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Would be great to have access to a non-stimulant. Some of us with IH cannot take stimulants for excessive daytime sleepiness, and Wakix (pitolisant) is too expensive for insurance to approve off-label for IH. Xywav is the only FDA approved medication for IH, but it mainly treats sleep inertia, not excessive daytime sleepiness. We rely on off-label stimulants that have generics to treat excessive daytime sleepiness such as Modafinil, Armodafinil, Adderall, Ritalin. There is no generic Pitolisant, so insurance won't approve it off-label for IH because it costs them too much money and they use any excuse they can to get out of paying $700 a month for a medication even if it works for IH's excessive daytime sleepiness. Many people cannot take stimulants due to heart conditions or substance abuse issues, or side effects. Would be nice to have an FDA approved non stimulant medication for IH to help us stay awake. We are also going on year 3 of schedule II stimulant shortage for Adderall and Ritalin, so many people with IH have trouble getting these medications each month anyway. There's no shortage of Wakix.
Michele supported: Improve Quality of Life: Urge the FDA to File and Priority Review the sNDA for PitolisantI suffer from IH and have had such a hard time with stimulant based medications. I’ve been trying to get WAKIX approved by my insurance for months and I’m desperate to try this medication. Another medication that worked for me was an off label use of Flumazonil. I had to stop taking it because I could not afford the $500+ month cost for the medication. It was $500 due to the use being off label. We need these medications. We demand to have a right to these medications and for them being affordable.
Kimberly supported: Improve Quality of Life: Urge the FDA to File and Priority Review the sNDA for PitolisantPlease help me and other people with idiopathic hypersomnia access pitolisant! We desperately need FDA approval so our insurance companies will help pay for this life-changing medicine. We have only one FDA-approved medicine, and it's often difficult or impossible for us to access pitolisant and other off-label medicines. Please watch my video at https://www.youtube.com/watch?v=Ww_6LfS4dFc&t=1s.
Michelle supported: Improve Quality of Life: Urge the FDA to File and Priority Review the sNDA for PitolisantDear people with the power to make this happen, You hold quality of life in your hands, and a decision to improve that quality of life is one that myself and others like me — People with Idiopathic Hypersomnia, a most unfortunately named, complex, chronic, invisible, often misunderstood neurological disorder that affects every daily life activity, are desperately relying on you for. The lack of access to this doctor supported treatment because of no FDA approval for a legitimate and life altering disorder is appalling and cruel. The lack of access to treatment is truly inhumane and beyond discouraging. Without access, people with Idiopathic Hypersomnia are suffering needlessly and at daily deficits. Please, please, please, give us a fighting chance…By the “power of the pen” and through treatment already FDA approved for others, you have the ability to improve our quality of life. People living with Idiopathic Hypersomnia deserve access to Pitolisant! …and you have the power to make it happen! Please, make it happen!
Kathryn supported: Improve Quality of Life: Urge the FDA to File and Priority Review the sNDA for PitolisantI’ve been in the position where my job was on the line because of this condition. Medication that works and is safe is essential for me to be able to function and keep a job. There are not a lot of options for medication for those of us with IH and we need ones that don’t require jumping through hoops to get a prescription, that are constantly running out, or that require drug testing.
Catherine supported: Improve Quality of Life: Urge the FDA to File and Priority Review the sNDA for PitolisantI only have one medicine approved for IH. We need more choices and your help. IH impacts and affects me every single day. Thank you for your service and support!
Anita supported: Improve Quality of Life: Urge the FDA to File and Priority Review the sNDA for PitolisantYou’re not alone — a community of supporters is ready to back you.
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