Empower the Patient | Advocate For What You Need

As a patient, you are expected to play a significant role in the decisions regarding treatment choices. In order to make informed decisions, you need to ensure you have access to all of the information related to your illness that is important to you. Sometimes, the treatment, care or support you need is not readily available. This section covers Advocacy and Access to Medication.

The Advocacy section will help you to speak up and take action to get the care you need. In the Access to Medication section, you will find out how to determine if any medication you require is available, and, if not, how to take action to make it available to you.

When the responsibility for healthcare decisions is shared, you and your healthcare providers are more likely to choose the options that best meet your needs. Give yourself permission to ask questions and express your wish for more information. Click here for a guide on questions to Ask Your Doctor.

An important part of taking action is to “speak up” so others know what you want and how they can help. When you speak up to express a need or to make a request – either for yourself or someone else – we refer to it as advocacy. There are two levels of advocacy.

Pullquote: Advocacy leads to positive change.

Pullquote: Advocacy leads to positive change.

Self-Advocacy: advocating for yourself to ensure:

you are fully informed about all of the available options;
you have enough input into decision-making;
decisions about your care reflect your needs and wishes.

System-Level Advocacy: advocacy that targets changes in institutional or government policies or practices because a treatment is not available to anyone in your province or the entire country. System change requires many people with different skills, knowledge, and resources working together to get the job done.

The right approach depends on the type of problem or issue you are facing. Advocacy is about being informed and involved, and working with the people in the healthcare system to resolve the problem.

Building Advocacy Skills

To be effective as an advocate, you may need to develop certain skills. Many of these skills are probably familiar to you. They include:

Information Seeking: Finding as much information as possible about your healthcare problem, the possible diagnostic or treatment options, reliable resources for more information, and the benefits and risks of various alternative approaches.
Assertiveness: The ability to express your needs clearly to the other party and to ask for their help in meeting your needs. Assertiveness means communicating without anger or aggression, and without blaming or judging others.
Active Listening: Listening carefully to fully understand others’ concerns or needs. You can demonstrate active listening by reflecting back accurately and respectfully what you have heard.
Negotiation: Effective negotiation is a process of constructive dialogue with the goal of satisfying your needs while also meeting the needs of the other party. An effective negotiation is one in which both parties feel the process is open and honest and their rights have been respected.

In the end what you are looking for is a resolution considered fair by both parties.

Negotiating for Treatment

Sometimes, to get what you need you may have to negotiate with your healthcare team, insurance company or public healthcare provider. To be most effective, you must first figure out what you need and then negotiate a win-win solution for all parties.

Pullquote: Taking ownership of the issue.

Ask for information on all treatment options, including those that may not be immediately available to you. Ask how each is administered, likelihood of success, and side effects. Ask what your healthcare provider would recommend if the patient was a member of his or her own family.
Decide what your goals and values are. What risks are you willing to take? What benefits are most important to you? Which side effects would be most difficult to live with? State what you are willing to give up, and what is “non-negotiable.”
Ask about treatments (medications or other therapies) for the most likely side effects of cancer treatment: pain, fatigue, anemia, and nausea. Ask about the effectiveness and side effects of each management technique.
Work toward “win-win” solution. Maintain respect and openness.

Why is What You Need Not Available?
If what you need is a treatment or care, why is it not available? Has it been approved by Health Canada? If approved, do you qualify for treatment? If you qualify, are your costs covered by: Your insurance plan? Your healthcare institution? Provincial drug plan? If costs are not covered, are there other ways of getting access? If costs are not covered, what would it take to get coverage?
If initial efforts to resolve the issue are unsuccessful, you may want to consider escalating to a higher level. But first step back and evaluate why the issue wasn't resolved. Sometimes you need a new approach or to involve others who might have an interest in the outcome. Discuss options and consequences with an independent advocate to help evaluate your strategy and action plan.
Escalating the issue can be a very powerful way to bring attention to your issue, but escalating too high or too fast may undermine your efforts. Advocacy works best if you start working with the person who made the original decision and then escalate upwards until it is resolved. Most hospitals have a patient advocate who can assist you in obtaining information, access to services (such as social work and home care), and treatment options.
Remember, there are several other people you can talk to before it gets to the final decision-maker.

Making an Effective Advocacy Plan
Effective advocacy means that you and your healthcare team are satisfied with the decision, and both of you felt respected and heard during the process. But, effective advocacy doesn’t just happen by itself. You must prepare, plan, and evaluate your actions. Whether you are taking action as an individual or at the system level, the steps are similar. You must carefully define your issue, plan your activities, and then convince others of the merits of your case. The following are the key elements of effective advocacy.
State the problem. State your goals. Develop a plan that looks at removing barriers and creating opportunities. Determine the most effective way to draw attention to the problem.


Step 1: Private Insurance
If you are like almost 60% of Canadians, you have drug coverage through private insurance. Private insurance plans are meant to supplement the basic coverage you get through your provincial healthcare plan.
There are two types of private insurance drug plans: An open plan is drug plan that covers the cost of all medications prescribed by a licensed physician. You simply use your pay-direct card at the pharmacy, or you pay for the medication yourself and then submit your claim. Sometimes approval in advance from your insurance company is necessary to determine if they will pay for a specific medication. A formulary-based plan is health insurance that covers only the cost of those medications that are included in the company's own formulary (a list of medications that the insurance company will pay for). Some drug plans may have a deductible (usually 10%-20% of drug costs) that you will be asked to pay “out of pocket”. Coverage under each insurance company’s plan varies greatly because provinces offer different basic health insurance and employers or professional associations choose varying kinds and levels of benefits. The first step is to determine if your insurance company covers the medicine prescribed. Call the Benefits Department of your insurance company. Make sure you have the following information: benefits policy number; employer’s name; the drug identification number (DIN) of the medicine you have been prescribed. If the drug in question is covered, find out to what level and whether there will be any cost to you. If the costs to you are high you may want to follow the steps below to advocate for higher coverage. If it is not covered, you have some work to do. Ask the insurance company why they will not cover it, and ask them to put it in writing. Talk to your Human Resources department and let them know what the insurance company said. Find out if it is not covered because of the plan your employer has purchased, or if it is the decision of the insurance company. Explain your situation and why the medication is necessary. Put it in writing. Ask HR to get involved on your behalf. If your employer has purchased a drug plan that does not cover your prescribed medication, ask to have the prescription covered. Your employer has the option of making an exception for this medication in this instance. If the insurance company does not cover the medication, ask your physician to write a letter of appeal to the insurance company, giving the reasons why you need this medication. If the appeal is rejected, you can contact the insurance company's ombudsman to file a complaint and request a review and a reversal of the decision. If you belong to a patient support group, ask for their help. Find out if others have had a similar experience and what they did.

Step 2: Public Insurance
Each province has their own provincial health insurance programs, but not everyone qualifies for medication coverage through these plans. The plans usually cover people over the age of 65, those on social assistance or with low family income, or people with certain medical conditions. There are two types of benefits provided by public insurance. Regular benefits classify most medications on public insurance plans. Special authorization benefits is a mechanism to ensure high-cost medications are used properly. Medications under this benefit category require your physician to confirm that you meet specified criteria; usually they include a code on your prescription.
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Determine if your medication is covered under public insurance. Use the contact numbers for your province to find out if the medication is covered for you. If a medication is not covered, you can advocate for coverage. Research the approval process on your provincial web site or www.drugcoverage.ca. A lot of the required forms are included on these sites. If you get discouraged, remember why you are doing this. The medicine your doctor has prescribed is critical to your health. Stay persistent and enlist help.

To view a printable version of this information, click here.