Diagnosis of a rare disease causes both financial and emotional hardship for families. According to the National Organization for Rare Disorders (NORD), diseases that affect less than 200,000 people nationwide are categorized as rare diseases. Many of these diseases affect even fewer people, making it challenging to find medical professionals and support systems. Many do not have the financial resources to care for themselves or a loved one after diagnosis; however, assistance is available.
Financial Help for Medical Procedures and Care
Obtaining financial assistance with medical care and procedures is one of the first steps. Many rare diseases can result in death if they are not properly treated. Quality medical care and access to the proper medical procedures is crucial to living life to its fullest despite the challenges of your medical condition. A variety of government assistance programs such as the Bureau for Children with Medical Handicaps and Medicaid are available for those with rare illnesses. Since many rare diseases are genetic or are detected at birth, many options are available specifically for children. Programs vary from state to state. Federal programs for assistance with rare diseases include the Prevention of Complications of Hemophilia. Children who have rare diseases that result in serious physical limitations or challenges may also be eligible for Social Security income (SSI) and Medicaid coverage. Contact your state's Department of Human Services for assistance with applying for financial help. NORD also has a networking program that can help with applying for aid.
Financial Help with Prescription Costs
Treatment for rare diseases often means an ongoing need for prescription medication. Even with health insurance, prescription co-pays can often add up. If you or your loved one requires additional medical supplies, such a ostomy bags or catheters, health insurance companies often place restrictions on how many of these supplies they will pay for in a given time period. If additional supplies are needed before your insurance company allows you to reorder, you may have no other choice but to pay for them out of pocket. There are, however, prescription assistance programs available that can help with prescription costs.
The Partnership for Prescription Assistance (PPA) is one option for people who have no insurance coverage for prescriptions. The PPA can help you find a program that will cover prescription drugs at little or no cost to you.
The National Organization for Rare Disorders (NORD) provides another option for financial help with prescription costs. NORD is available for individuals with rare disorders who have no prescription coverage, as well as individuals with rare disorders who do not have enough insurance coverage for prescription drugs.