Why Treatment Access is Important

In the last few years, CLL treatments have benefited from many advances in science and drug development. The work is continuing and drug therapies are increasingly tailored to patients’ genetic profiles (17p, 11q, 13q etc.) mutational status, and ability to tolerate treatment .

But the number of new drugs and their high cost has put a lot of pressure on public and private drug plans. Not all drugs are available in all provinces or territories. Some drugs are only available through special access programs.

Staying informed about the availability of the latest treatments allows you to have a knowledgeable discussion with your doctor and gives you confidence that you are making the best choices possible.

NameAlso Known AsPatient StatusAll Provinces Except QuebecQuebec
ArzerraOfatumumabpreviously untreatedViewView
GayzvaObinituzumabvariousViewView
ImbruvicaIbrutinibpreviously treatedViewView
ImbruvicaIbrutinibpreviously untreatedViewView
TreandaBendamustinepreviously treatedViewView
Bendamustinepreviously untreatedView
ZydeligIdelaisibpreviously treatedViewView
VenclextaVenetoclaxpreviously treatedwithdrawn by manufacturer

Patient Support Programs

Janssen BioAdvance® is a comprehensive program of personalized services and support for physicians, and patients undergoing treatment with IMBRUVICA® with a goal of facilitating the treatment process.  Janssen BioAdvance® provides IMBRUVICA® patients with personalized care, made available at no cost, throughout their treatment journey, which includes:  the one-on-one support of a BioAdvance® Coordinator who can answer questions regarding IMBRUVICA®, educational materials and tools, and, assistance navigating reimbursement options.  This program will continue to be available once provincial funding is in place.

For more information on Janssen BioAdvance® please reach out to your IMBRUVICA® Health Care Provider or to Janssen BioAdvance® at imbruvica@bioadvancemail.ca

Roche Patient Assistance Programs help patients access Health Canada approved Roche medications.

Services include call centre support; case management; reimbursement navigation; infusion and pharmacy services.

For more information, call: 1-888-748-8926

The Gilead Oncology Patient Support Program (GO-PSP)™ is a patient support program specifically designed to assist patients prescribed ZYDELIG® for the treatment of relapsed chronic lymphocytic leukemia (CLL) in combination with rituximab, or as a monotherapy for the treatment of follicular lymphoma (FL), who have received at least two prior systemic regimens and are refractory to both rituximab and an alkylating agent.

Patients successfully enrolled into GO-PSP are eligible for financial assistance, adherence and nursing support.

To contact GO-PSP:  1-844-GLD-OPSP (453-6777)

Overview of CLLPAG’s Advocacy for New Drugs

Cancer drug approval in Canada is a multi-step process. Health Canada assesses a new drug for quality, safety and efficacy. Once a drug has Health Canada approval, it is available for sale in Canada but that does not mean the drug is available free-of-charge through your provincial or territorial drug plan.

The drug’s cost/benefit is assessed by pCODR (pan-Canadian Oncology Drug Review) and INESSS (Institut national d’excellence en santé et en services sociaux) who are solely Quebec-focused.

As part of their consideration, both pCODR and INESSS assess patients’ experience of living with cancer and the impact that the drug may have on those taking it and their caregivers. pCODR then recommends to the provinces (except Quebec) if they should fund the drug. The provinces and territories still make the final decision on whether or not to fund the drug.

CLLPAG has surveyed CLL patients and their caregivers and submitted patient evidence for nine drugs since 2012. View the chart.

Our Advocacy Partners

cancertainty

CanCertainty

The CanCertainty Coalition is a united voice of more than 30 Canadian patient groups, cancer health charities, and caregiver organizations, joining together to significantly improve the affordability and accessibility of oral take-home cancer medications in Ontario and Atlantic Canada. Other provinces fund both injectable and oral drugs.

CanCertainty works collaboratively to ensure that all Canadians have access to fair and equal access to oral take-home cancer medications – no matter their age, cancer type, treatment type or where they live.

http://www.cancertaintyforall.ca/

CORD Canadian Organization for Rare Disorders

CORD is Canada’s national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada. (CLL is considered a rare disorder.)

www.raredisorders.ca

Patient Power

Patient Power brings you video interviews and transcripts (in French as well as English) about CLL to help you make informed decisions in partnership with your medical team. These are patient-centric programs focused on delivering the most credible, authoritative and up-to-date health information. Founded by CLL patient-advocate, medical journalist, and author Andrew Schorr, in partnership with his wife and care partner, Esther, Patient Power goes far beyond basic health information. View the entire library of unmatched content on CLL and living with cancer at Patient Power.info.

http://www.patientpower.info/chronic-lymphocytic-leukemia

lymphoma_canada

Lymphoma Canada

Dealing with lymphoma can be overwhelming, whether you’re a patient yourself or you know someone who is. But you don’t have to face it alone. Lymphoma Canada connect patients, their family and friends, medical professionals, researchers, volunteers, and donors to build a strong lymphoma community.

www.cllinfo.ca

CCAN (Canadian Cancer Advocacy Network)

CCAN is an umbrella organization dedicated to connecting member cancer organizations from across Canada to work underway in cancer control. Through partnerships and resource sharing, CCAN works collaboratively with stakeholders in order to maintain momentum, avoid duplication and advance shared areas of interest to patients, caregivers and their families.

http://www.ccanceraction.ca/

CLLAN – CLL Advocates Network

CLLAN enhances CLL patient care and improves outcomes by collaboratively:

  • Acting as an international collective representative of CLL patient groups,
  • Developing tools to empower patients to become advocates to influence policy makers and participate in health technology assessments, research and clinical trial development.
  • Sharing best practices and resources between patient groups through annual meetings, education and a network website to improve CLL knowledge and awareness.

http://www.clladvocates.net/

Treatment Access News

Sub-Cutaneous ImmunoGlobulin (SCIG) is now available in BC, MB and ON. Talk to your hematologist if you are receiving IVIG and would and like to try to self-administer at home.

~ September 2016

Feb 2, 2016

Rising drug costs are Forcing Changes in Private Drug Plans

Innovative Medicines, the industry association of the pharmaceutical industry, recently held a seminar for patient groups about changes in private drug plans.

The pharmaceutical industry representatives reported that new high-priced specialty drugs are creating a budget crunch for the private group insurance drug plans (Green Shield, Great West Life and Manulife and other insurers). CLL patients are familiar with Ibrutinib, which has recently been approved in most provinces and can cost over $100,000 a year to patients without drug coverage. To manage the new costs, insurers are setting up new drug plan models. Here are four examples:

  1. Manulife’s Drug Watch – Manulife has set up special program to scrutinize its drug coverage. Under DrugWatch, an additional ‘financial assessment’ determines if a drug will be covered or not. A drug could be covered but with significant price increases in the cost of the drug plan for employers and employees. In addition, coverage could be conditional on patient participation in a drug adherence program to make sure patients take their medication and are responding to the medication.
  2. Prior Authorization – With prior authorization,additional patient information must be provided to the insurer before drug coverage is approved.
  3. Case management – As in disability claims, a case manager will review the proposed treatment, consider alternatives and evaluate results. Patient cooperation is a key criterion in continued coverage.
  4. Maximum limits – The insurer sets a claims limit for certain classes of drugs. Until now, the cost pressures have been from specialty drugs for small groups of patients but many new high cost drugs for larger patient groups are coming to market in the near future. Innovative Medicines hopes that employers and employees will see the value of continuing well-funded and comprehensive private drug plans.

Publicly funded drug plans are undoubtedly facing the same cost pressures, although the private plans seem to be leading the changes.

To ensure that your health needs are met, it is best to check with your employer or trade union to make sure they are aware of your drug needs. Ask to be made aware of any discussions about changes in drug coverage.