As many people within the rare disease community know, a rare disease diagnosis can come with a significant financial burden. Additionally, the costs, treatments, equipment, and other needs are not always covered by insurance. The Assistance Fund (TAF) was formed out of a desire to provide financial support to patients and families in needed. This independent charitable patient assistance organization offers help in covering out-of-pocket costs related to copayments, coinsurance, deductibles, and many of the other costs that appear throughout this process. Currently, TAF manages nearly 90 different disease programs. Now they have added another. In late August 2023, TAF shared via press release that it had opened a new assistance program for individuals with idiopathic hypersomnia (IH).
Understanding Idiopathic Hypersomnia (IH)
Idiopathic means of unknown cause. So people with idiopathic hypersomnia experience excessive daytime sleepiness, but doctors aren’t exactly sure why. This uncommon, chronic neurological and sleep disorder affects an estimated 80,000 people nationally – although an estimated 50% of these individuals remain undiagnosed. People with IH may sleep for ten or more hours at a time, with some individuals sleeping for up to 18 hours each day. But even naps or long periods of sleep do not offer symptom relief. Symptoms often manifest in teenage or young adult years and may worsen during hormonal changes (such as menstruation). People with IH may experience:
- Appetite loss
- Anxiety or irritability
- Impaired cognition
- Low energy
- An immediate or sudden need for sleep
- Restlessness
- Dizziness, grogginess, and/or disorientation
- Cold hands and feet
Within the new IH assistance fund, patients can gain access to financial help for:
- Treatment-related ground travel costs
- Therapy administration costs
- Health insurance premiums
- Prescription drug assistance
- Note: The drugs covered under this program are Midodrine, Droxidopa, Northera, and Xywav.
Learn more about the IH assistance fund. You may also call 855-369-2728 to talk to a Patient Advocate for more information.
