Support Programs Designed to Assist Patients and Their Families

If you or a family member has had the misfortune of being diagnosed with a rare disorder, you likely have benefited from the types of services or support pharmaceutical manufacturers offer to patients and physicians who require the use of their medications.  

Being diagnosed with a serious illness is an overwhelming event in anyone’s life, but it really is only the beginning of the journey for the patient, as well as their families.  It is also a time when a patient can begin to feel lost and uncertain of what their next steps are.

The services offered by Patient Support Programs focus on easing this burden and can include several options.

• Reimbursement navigation: Assistance with identifying public and private drug coverage options for the patient, as well as offering assistance to ease the burden of paperwork.
• Clinic and nursing services: Medications for rare disorders often require a nurse to administer the product, either at a private clinic or at the patient’s home, when the services aren’t covered under the public system.
• Education, training, and adherence: Many patients require additional support on how best to manage their disease.  This can include ongoing education of the diagnosis itself, self-infusion/self-injection training, lifestyle or diet counseling, reminder calls, and many other services to assist the patient in taking their medication appropriately.
• Health outcomes and safety monitoring: Given the significant costs of treatment and small patient populations associated with rare disorders, many programs maintain ongoing contact with patients in order to monitor and track the efficacy of their treatment.
• Financial support: Some programs may offer some additional support to families and caregivers who have limited insurance coverage and may not be able to afford their out-of-pocket expenses.
• Special access programs: Support for physicians and patients in securing access to medications that are currently only available outside of Canada.

The specific combination of services offered will vary by each program; however, the focus is always on easing the burden on the patient and their families as they attempt to access the critical lifesaving medications they need.  Programs also allow patients and their families to develop a relationship with their dedicated Case Manager who can work with patients and their families throughout the entire process to ensure the coordination of all services is as seamless as possible.

While not well known to many Canadians, these programs play a critical role for patients with rare disorders each and every day.  

Source:  Rare Diseases. National Post. March 29, 2014. Available here.