The overall financial cost of managing a rare disease diagnosis can be hard for patients and families, even with the best health insurance coverage.
For example, managing a rare disease diagnosis often includes buying prescription drugs, which may include expensive orphan drugs. Rare disease patients and families might also have to pay for specialized medical equipment, travel to multiple specialists, and full-time or part-time caregiving.
While the financial challenges for people living with a rare disease can be difficult, state and federal resources are available to help manage the costs for those who qualify.
Alabama Resources
Alabama Department of Rehabilitation Services (ADRS)
Alabama Department of Rehabilitation Services (ADRS) is the primary state agency that serves Alabamians with disabilities from birth throughout their lives through four main programs:
- Early Intervention (EI) – Serves children from birth to age three by coordinating services statewide for infants and toddlers with developmental delays.
- Children’s Rehabilitation Service (CRS) – Serves children and teens from birth to 21 with special healthcare needs and their families.
- Independent Living – Assists individuals with the most significant disabilities by providing a wide range of education, assistive technology, training, and home-based services to allow them to gain more independence.
- Vocational Rehabilitation (VR) Services – ADRS’ largest program; serves teens and adults to provide specialized employment and education-related services and training. Programs within VR include:
- VRS-Blind/Deaf Program – Provides Blind services, Deaf services, and OASIS (Older Alabamians System of Information and Services) programs.
- Business Enterprise Program – Enables qualified blind individuals to achieve independence through self-employment; partners with businesses to connect them with reliable and cost-efficient vendors.
- Business Relations Program – Works with thousands of Alabama businesses on disability-related issues. This include providing recruitment assistance, disability management, training, and employee retention services.
- Lakeshore Rehabilitation Clinic – Accredited program in Birmingham that helps people with significant disabilities achieve their educational goals through vocational training, college, or direct employment.
Alabama Home and Community-Based Services (HCBS) Medicaid Waivers
Alabama Home and Community-Based Services (HCBS) Medicaid Waivers provide services to support people with intellectual or significant physical and medical disabilities. These services provide support that helps people live at home or in other community-based settings like group homes.
The services provided can include the following:
- Personal care
- Skilled nursing
- Behavioral supports
- Respite services
- Assistive technology
- Homemaker services
Alabama’s seven waiver programs are administered by the Alabama Medicaid Agency and its state partners:
- The Alabama Department of Mental Health (ADMH)
- The Alabama Department of Senior Services (ADSS)
- The Alabama Department of Rehabilitation Services (ADRS).
Other Alabama Resources
The Alabama Health Insurance Premium Payment (HIPP) Program is designed to save money for Medicaid families with high healthcare costs. The program pays most out-of-pocket medical expenses for qualifying Medicaid recipients and reimburses policyholders for the cost of health insurance provided by an employer or COBRA. Some recipients may also qualify to receive reimbursement for the cost of a family health insurance policy premium. LEARN MORE.
ALL Kids is an Alabama Children’s Health Insurance Program (CHIP) administered by the Alabama Department of Public Health. This low-cost, comprehensive healthcare coverage program for children under age 19 includes benefits such as regular checkups and immunizations, sick child doctor visits, prescriptions, vision and dental care, hospitalization, mental health and substance abuse services, and other services. ALL Kids uses Blue Cross Blue Shield of Alabama to provide medical and mental health services through their preferred provider network (PPO). LEARN MORE.
UAB Hospital’s Charity Care Program is designed for uninsured or underinsured patients of the Kirklin Clinic of UAB Hospital or affiliated clinics. Applicants may qualify for financial assistance, which is based on household size and household income. To receive an application, ask your UAB healthcare provider.
Federal & Non-Profit Resources
Federal Resources
Consolidated Omnibus Budget Reconciliation Act (COBRA) is government legislation that gives workers and their families who lose their health benefits through job loss and other circumstances the right to choose to continue group health benefits provided by their employer for limited periods of time. LEARN MORE.
The Medicare Insurance Program is designed for people who are 65 years or older, certain younger people with disabilities and people with end-stage renal disease (ESRD). LEARN MORE.
The Medicaid Insurance Program is a federally sponsored, state-administered health insurance program for families and individuals with low incomes. LEARN MORE.
The Affordable Care Act/Obamacare provides access to the federal government’s insurance marketplace for health insurance policies. These policies are provided by private insurance companies for individuals, families, and small businesses. Health Insurance Marketplace call center: 1-800-318-2596. LEARN MORE.
USA.gov – Provides links to federal resources that can help with the cost of medical care and prescription drugs. You can also contact them directly at: 844-872-4681. LEARN MORE.
Non-Profit Patient Assistance Programs
NORD RareCare® offers assistance programs that provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists. LEARN MORE.
Patient Advocate Foundation (PAF) provides professional case management services to people with chronic, life-threatening, and debilitating illnesses. LEARN MORE.
Patient Services, Inc. provides financial support and guidance for qualified patients with specific, rare chronic diseases. LEARN MORE.
