Living with a rare disease can be hard: mentally, physically, and even financially draining. A 2013 survey called the Rare Disease Impact Report (conducted in the US and UK) asked patients, healthcare professionals and payers (who finance healthcare within a country’s health system) for their perspectives on the impact of rare disease. Almost all the 20 payers included in the survey reported that treatment for a rare disease is relatively more expensive, and that costs are rising more quickly, compared with more common conditions. This report also states that 55% of US respondents incurred direct medical expenses not covered by insurance, and 18% in the UK not covered by the National Health Service. 

Costs of living with a rare disease

The costs of living with any health condition generally include:  

• Direct healthcare costs – medications, health equipment, medical tests, specialist visits, hospitalizations, health transport 
• Direct non-healthcare costs – professional caregivers, non-health transport, social services 
• Indirect costs – not being able to work, early retirement of the person or caregiver 

Below, you will find some of the most challenging financial implications seen with rare disease. Also included are patient group and pharmaceutical industry initiatives designed to help address these challenges.  

Financial Burden from Lifestyle Change 

With rare diseases such as Erdheim-Chester Disease, depending on various disease complexities, the patient and/or the caregiver may have to leave paid employment, reduce weekly hours, or even retire earlier than expected.  

Health Insurance Burden 

Since expertise in Erdheim-Chester Disease is limited, it can be difficult for patients to receive standard of care from doctors within their insurance network. For some, coverage is only within state lines. Beyond coverage of the care, many patients may face a financial burden for prescriptions.  

Travel Cost Burden

Another hidden cost of rare disease is travel: attending doctor visits, outpatient appointments, clinical research visits and hospital stays all cost money. Almost every person with a rare disease could incur travel costs; for example, when they visit dedicated centers away from home or because disease symptoms limit their everyday mobility. 

 Organizations that provide assistance to those with rare disease: 

• Patient Services, Inc: Provides financial support and guidance for patients with specific, rare, chronic diseases in the US. A variety of legal services are also available free of charge. (http://www.patientservicesinc.org/)
•  EveryLife Foundation’s Rare Giving Program: Rare Giving is a program of the EveryLife Foundation for Rare Diseases to support individual rare disease patients as well as organizations that promote collaboration across rare diseases and engage patients, researchers and others in the community in public policy. (https://everylifefoundation.org)  
• NORD Patient Assistance Program (RareCare): Since 1987, NORD has provided assistance programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford. These programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists. (https://rarediseases.org/for-patients-and-families/help-access-medications/patient-assistance-programs-2/)  
• Air Charity Network (Angel Flight): Air Charity Network is a charitable organization that provides access for people in need who are seeking free air transportation to specialized health care facilities or distant destinations due to family, community, or national crisis. Angel Flight will also coordinate for those traveling for clinical trials. (http://aircharitynetwork.org/)
• Partnership for Prescription Assistance (PPA): America’s biopharmaceutical research companies are on a mission to improve patient health, advance medical innovation and fuel economic growth. The medicines they create provide hope that a cure can be found, treatment will be effective, and patients’ lives can be improved upon. https://medicineassistancetool.org/  
• National Institute of Health Family Lodge: A home-like place of respite for families and loved ones of adult patients who are receiving care at the NIH Clinical Center (located in Bethesda, Maryland).  (https://clinicalcenter.nih.gov/familylodge/)  

 

The cost of a rare disease to families can be high, but there are many supportive programs available, especially in the US, where costs are particularly high. Have you had success with these services that are available? 

The following link is a great resource with many of the above referenced programs in one location. https://everylifefoundation.org/financial-support/.