IBD Patient Support Programs When Starting Biologic Medication

Perhaps you’ve been struggling for several years to treat your Crohn’s disease or ulcerative colitis, trying numerous medications without much success. Then your physician decides it’s time for you to start a biologic medication designed to treat one of these inflammatory bowel diseases (IBD).

Biologics are very specific, highly effective medicines made in living cells. They improve health and quality of life in many complex conditions, including Crohn’s disease, ulcerative colitis, diabetes, rheumatoid arthritis, cancer, osteoporosis, psoriasis, HIV, multiple sclerosis, growth deficiencies, and many more. They are structurally complex proteins several hundred times larger than traditional chemically-made small molecule drugs, requiring expensive biotechnology methods to produce.

Once you are prescribed a biologic, you might be concerned about how you will pay for it. Under the Canada Health Act, medications administered to an in-patient while at the hospital are covered under government-funded hospital services (medicare). However, when your physician prescribes a medication for you to take when you are not staying at the hospital, it falls under the varied rules of our numerous publically funded pharmacare plans (provincial/territorial/federal), private insurance coverage (if available), or paying out-of-pocket. Some programs only cover biologics when you meet certain criteria, such as having a moderate to severe case of IBD and having tried and failed less costly medications first.

The process of managing drug insurance coverage and scheduling medication, especially when you are not well, may seem overwhelming. Some patients are reluctant to use biologics due to their potential side effects, cost, and the fact they are delivered into the body by intravenous infusion under medical supervision in a clinic or hospital, or by injection at home, where you will also have to adhere to a strict product storage and administration schedule. Some pharmacies are set up to help you with an injection.

Canada is the only country in the world to have comprehensive patient support programs that are paid for by the pharmaceutical companies. This means that you are eligible to participate in the patient support program offered by the manufacturer of the medication prescribed by your doctor. If you change your biologic medication to one made by a different company, then you will need to change to a different patient support program.

These programs do differ from each other, although all offer services that have a positive impact on adherence (taking medication as directed) and persistence (continuing to take medication for a prescribed length of time). However, there is a wide range in coordination and support for financial assistance and reimbursement, including under company compassionate programs. They also provide services such as patient education and counselling, home delivery of the medication for injection, and nursing support.

How it Works

The process generally begins when your doctor prescribes a biologic medication and refers you to the corresponding program, for which you need to sign an ‘informed consent’ document. This document explains what participation in the patient support program looks like, including the services you may choose to accept. A nurse will call you within a few days to further explain the program and its services and to collect relevant information pertaining to your financial, insurance, and health matters. Providing this information to the program will ensure that their staff have all of the material necessary to customize the services you need and help you navigate through what can often be an extremely challenging and time-consuming process. All of this is designed to get you started on the medication as soon as possible. Participation in a patient support program, including which services you might choose to accept, is at your discretion and not a requirement of being on a biologic medication.

The program staff will help you to identify your insurance coverage availability and eligibility (public, private, a combination of the two, or paying for it yourself) and handle the paperwork for you. An important benefit of some patient support programs is that they will help you follow the treatment goals you set with your physician and identify any personal goals, reviewing them with you regularly.

As with all medications, some individuals experience side effects, even though the product is working to keep the underlying disease under control. This might cause you to want to stop taking the drug. It is important that you discuss this with your program coordinator and your physician before stopping your medication, as they might be able to help you manage side effects.

Do I need a Patient Support Program?

One study of 10,857 Canadians participating in a patient support program found that those receiving ongoing interventions through nurse-initiated phone calls have a large and statistically significant association to greater patient persistence and adherence.1 It found that patients were 72% less likely to cease therapy when compared to those who did not receive the nurse-initiated interventions and were more likely to adhere to the treatment regime. Failure to initiate treatment was more than 80% more frequent among patients who did not receive a phone-call intervention from a nurse.

While the support program is a very important part of your care, the specific services they offer will not be the pivotal factors regarding which medication you and your physician decide is right for you. Understanding your disease and how to effectively manage it is an important goal for a long-term, positive outcome. The best medication for you is the one that will manage your disease – the one that you will take as directed and for the appropriate length of time as prescribed. Be sure to have a candid discussion with your doctor about your own concerns, preferences, and expectations.

Program Benefits

  • patients have efficient and effective support to gain access to drug coverage and medication as soon as possible
  • identifies options for health insurance coverage, whether private, public, or both
  • efficiently interfaces with insurer(s), as patients/office staff are not necessarily familiar with the constant changes to policies or procedures and provincial drug approvals
  • frees physicians and/or their office nurse(s) from time taken to complete some of the government and insurance request forms, and medication specific-education
  • provides education about specific drug and disease symptoms
  • is available more regularly than a physician/nurse practitioner’s office staff
  • reports side effects and adverse events (pharmacovigilance)
  • provides you with helpful information to allow you to access your treatments while travelling
  • provides treatment updates to your physician and/or nurse

First published in the Inside Tract® newsletter issue 207 – 2018
By Gwen Ellert, RN, BScN, MEd
Photo: © Katarzyna Białasiewicz | 123RF.com
1. Gerega S et al. Canadian Study of Outcomes in Adalimumab (HUMIRA®) Patients with Support for Adherence – Results from the Companion Study [abstract]. Arthritis Rheumatol. 2016; 68 (suppl 10). Available at: https://acrabstracts.org/abstract/canadian-study-of-outcomes-in-adalimumab-humira-patients-with-support-for-adherence-results-from-the-companion-study/. Accessed 2018-08-17.