Managing your health: a guide for people living with HIV
19. Access to treatment
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Fortunately for people with HIV in Canada today, there are a number of effective anti-HIV drugs available. Sometimes access to these treatments is as easy as seeing your doctor, getting a prescription and having it filled at your local drugstore. But sometimes it is not. This chapter will help you navigate the systems and processes that make prescription drugs and other treatments available to Canadians.
How drugs are approved for sale in Canada
All drugs in Canada, whether prescribed by a healthcare provider or bought over the counter, must first be approved for sale by the federal government. The federal health ministry, known as Health Canada, is responsible for ensuring all drugs sold are safe, effective and of good quality. Health Canada also ensures all “biologics” (drugs and vaccines derived from living sources, such as interferon for hepatitis C), natural health products (such as vitamins, supplements and herbal therapies), cosmetics and medical devices are safe and effective.
Before being approved for sale, prescription drugs must undergo thorough clinical trials in Canada and/or abroad to ensure they work (that is, they are effective), are safe and to find out if they interact with other drugs. These trials are reviewed by Health Canada as part of its decision-making process. It is very important to recognize that clinical trials do not mean that a specific drug or other treatment will be safe for everyone all the time. Clinical trials test a drug over a limited time and usually in limited populations, so it is only possible to get a better picture of how safe and effective a drug is when it has been in use for a longer time in the general population.
How to access approved prescription drugs
A prescription drug can only be obtained by a prescription from a doctor or other licensed healthcare provider. Prescription drugs can only be bought through a licensed pharmacist in a drugstore or in a hospital. Internet pharmacies also sell some drugs, but you need to be careful to ensure that the Internet pharmacy is legal. Not all of them are. If you are uncertain, check with your provincial pharmacists’ association, doctor, healthcare provider or local AIDS service organization.
Anti-HIV drugs are expensive and the issue, as with all drugs, is who will pay for them. Some Canadian people with HIV have private insurance plans that pay for all or part of their prescription drugs. A few people may be able to pay cash for their drugs, but most people cannot afford to do so. As a result, all provinces and territories have created public drug coverage plans to assist with the payment of certain drugs and treatments.
Provincial and territorial drug coverage programs
Each province and territory in Canada has a different program for subsidizing drug costs for their residents. These programs have different criteria for who is eligible for coverage, how much the province or territory will pay and what drugs are covered. The programs may be complicated to understand without the help of your local AIDS service organization. Generally, the publicly funded provincial and territorial drug programs offer coverage for people on social assistance (“welfare”) and for seniors over the age of 65. Some provinces issue cards to show to your pharmacist that prove you are entitled to this type of coverage.
Some provinces and territories offer assistance to cover costs for other citizens who have high drug costs but little or no private insurance. This is often referred to as a catastrophic drug program. The availability of such programs varies among provinces and territories, so check with your local health authority or your local AIDS service organization to learn about whether you are eligible for coverage.
Each province and territory has found different ways to contain the cost of drugs. There are a number of ways to do this:
- limit the list of drugs that the province or territory will pay for;
- require the consumer to pay a deductible (usually income based) as part of public catastrophic drug coverage;
- pay for only the cheapest drug in a class of drugs and require the person wanting a more expensive drug of the same class to pay for all or some of it.
For people who meet the criteria for partial or full coverage, the provincial and territorial governments each create a list of drugs and treatments they are willing to subsidize (often called a drug formulary). Generally, governments make the decisions on which drugs to include in the formulary with the help of information provided by independent medical and economics advisors.
Recently, in order to try to get more consistent coverage for people across the country and to save time in decision making, nine of the 10 provinces (Quebec does not participate) and the federal government agreed to set up a common drug review process. This process is managed by the federal government but paid for jointly by the provinces and federal government. This process makes recommendations to the provinces and territories about what to cover. These decisions about what to recommend are based on the advice of an expert drug advisory committee; committee members weigh whether it is cost effective for the government to pay for the residents of a province or territory to receive a particular drug.
The provincial, territorial and federal governments do not, however, have to accept the recommendation of the expert drug advisory committee and sometimes do not. The creation of the common drug review has not yet achieved consistent access across the country.
Each province or territory makes its own decision about which drugs and other treatments it will cover. The decision is based mainly on economic factors, including its drug budget, population base, number of eligible residents with each disease or condition, as well as the cost of treatments and choice of treatments available. Thus, we have a patchwork quilt of public drug coverage across the country. You need to check the coverage in your province or territory and any conditions for coverage.
You can contact CATIE for more information on drug coverage plans across Canada.
Federal government drug coverage programs
Some people are covered under plans set up by the federal government. These people include refugees, members of the military, federal government employees and retirees, federal prisoners and designated Aboriginal people who are living on reserves.
Because of the legal relationship between Aboriginal people and the federal government, access to treatments for First Nations, Métis and Inuit peoples may involve a different process than described above, particularly for Aboriginal people living on reserves. The Non-Insured Health Benefits Program is a national health program administered specifically for eligible members of the First Nations and Inuit. It is a supplemental program designed to meet medical, vision and dental needs not covered by provincial or territorial insurance plans or private insurance companies. For more information see Non-insured health benefits program, Chapter 20, Money matters.
Prisoners in federal and provincial prisons should receive the same standard of care for HIV treatment as everyone else. In practice, however, it is common for problems to occur in ensuring an uninterrupted supply of anti-HIV drugs to people with HIV in the prison system. There are many causes for this. Prisons may run out of HIV drugs; prisoners may be transferred from one institution where drugs are available to another where they are not; and discharge planning for prisoners being released is often not well organized. The Prisoners AIDS Support Action Network assists prisoners with HIV treatment access issues.
Specific rules regarding access to treatments for immigrants, refugees and undocumented people are set out by the federal government. If you have filed a refugee claim and received an acknowledgement of the claim from Canadian Immigration, you can get medical care through the Interim Federal Health program. For more information, see Chapter 17, Immigrants, refugees and non-status people with HIV, and Chapter 20, Money matters.
Private healthcare insurance coverage
Some people have a private drug plan, which may be either a group or individual plan. Each plan decides what drugs and treatments to cover, often guided by the list of treatments covered by the provincial or federal drug formulary. Check the contents of your plan to be sure. If you have an employer plan, the human resources person where you work can provide this information. You are entitled to it. You can also obtain it from the insurance company providing the coverage.
Generally, only prescription drugs are covered, but some plans cover some over-the-counter medications if you have a prescription from your doctor. However, this means you must obtain the drug from a pharmacist and pay a dispensing fee.
Private plans may also cover additional health-related costs, such as dental work, massage and chiropractic services. If you have short- and/or long-term sickness and disability coverage, medical coverage may also continue in whole or part during the time of your absence from work. Check your plan to see if it covers such costs.
Hospitals and clinics
You do not have to pay for drugs given to you while in hospital. However, the hospital may use generic drugs and if you want the brand name drug, you may have to pay for it out of pocket.
There are some clinics where some treatments may be obtained at no cost. Your local AIDS service organization can generally assist you in locating these clinics.
Ensuring continuous coverage when you move
If you are moving from one province or territory to another, or from federal to provincial/ territorial coverage, you need to check the rules for coverage in the new location as these may be quite different. The drugs you use may not be covered or there may be different financial arrangements for coverage. Some provinces will only pay for drugs if a healthcare provider in that province has written a prescription. There may be other restrictions you will need to be aware of.
It may take several months to meet the residency requirements for coverage in your new location. If you are moving from one province or territory to another, it is a good idea to make sure you have enough drugs for at least three months to ensure you do not run out before you are able to access the services in the new area. Check to see whether your former location will provide any coverage after your move until you are covered in the new area.
Contact CATIE for more information on the differences between the various provincial and territorial drug plans.
If you have no drug coverage
If you are not covered by a drug plan, you can pay for drugs yourself, but few people can afford this. If you have no health coverage, check with your local AIDS service organization and healthcare provider to determine what options are available for you to enable you to access treatment.
How to access unapproved drugs
Unapproved drugs are those which have not been reviewed and approved by Health Canada for sale. Depending on the circumstances, it may be possible to obtain access to these drugs on a temporary or permanent basis.
The federal government’s Special Access Program
Health Canada’s Special Access Program provides access to drugs and medical devices not available for sale in Canada. Your doctor must apply to the Special Access Program on your behalf and the drug company must agree to provide the drug to you. The Special Access Program must also agree to supply it to you. The drug company can agree to provide it for free or to charge you for the drug. If you are required to pay, neither the provincial, territorial, federal, nor private health plans will generally reimburse you for the drug. You should check with your drug coverage plan to see if they will reimburse you.
If you need a drug that has not been approved for sale here but is available elsewhere, speak to your doctor.
Clinical trial participation
Pharmaceutical (drug) companies often have clinical trials of their drugs that give eligible participants access to drugs that are not yet approved or widely available. Clinical trials test the drug in humans for safety, effectiveness, quality and other aspects. Clinical trials have eligibility criteria and usually restrict the number of people who can participate. If you are interested in taking part in a clinical trial, you should discuss this possibility with your doctor.
If you do join a clinical trial, be sure to understand and sign the informed consent form before entering the trial. This form outlines the conditions of the trial and, in particular, the risks to you of participation. Also be sure to discuss how, if the drug works for you, you can continue to have access to it after the trial has finished until you are able to get it through your drug plan. If there is agreement by the drug company to continue to provide the drug after the trial ends, a statement to this effect must be in the informed consent that you sign.
Many drug companies now provide an expanded access arm to their clinical trials. An expanded access arm is a group of people who are part of the trial but for whom the eligibility criteria for the trial do not apply. Usually, eligibility for the expanded access arm is based on the recommendation of your doctor.
Read the informed consent form for this arm of the trial carefully to ensure that you understand the conditions for continued eligibility. Ensure that if you benefit from the treatment you will be able to obtain it after the expanded access arm of the trial ends until you are able to get it through your drug plan.
There are a number of sources of information about drug access and clinical trials, including CATIE, the Canadian HIV Trials Network and your doctor.
Compassionate access generally refers to a situation where an experimental drug is provided to someone who is very ill and the experimental drug is a last chance to try to improve the person’s health. While drug companies generally do not have formal compassionate access programs, they may be willing to provide a drug to a doctor who has a patient in this situation. Should you be in this situation, discuss compassionate access with your doctor.
How to access non-prescription medications and other kinds of treatment
Non-prescription treatments—including non-prescription medications (also called over-the-counter drugs), complementary and alternative therapies, and vitamins and supplements—are not usually covered by provincial, territorial or federal plans, except in the most unusual of situations. See Chapter 5, Complementary and alternative therapies, for more information on available treatments. However, some provinces and territories may cover some non-prescription treatments specifically for people with HIV. Check with your local AIDS service organization to see if you can access this coverage. Some private drug plans will provide limited coverage for non-prescription treatments if they are “prescribed” by a licensed healthcare provider and dispensed by a pharmacist. In that case a dispensing fee must be paid, increasing the cost of the drug or treatment.
Some tax relief may be available for the purchase of non-prescription treatments so keep your receipts and check with an accountant or other tax expert. Some AIDS service organizations have tax clinics where you can get help with this (see Chapter 20, Money matters).
Some AIDS service organizations provide limited funds to cover purchases of over-the-counter drugs or vitamins and supplements. Check with your local AIDS service organization to see if such funds exist.
Federal, Provincial and Territorial Drug Access Programs – Information about drug benefit programs across Canada
Canadian Treatment Action Council (CTAC) – National non-governmental organization with a mandate to support access to treatment issues
Clinical Trials: What You Need to Know – Plain language information about clinical trials, including their aims, procedures, risks and benefits from the Canadian HIV Clinical Trials Network. This web site also includes a listing of clinical trials currently enrolling in Canada.
Prisoners AIDS Support Network (PASAN) – Assists prisoners with HIV treatment access issues. PASAN accepts collect calls from prisoners across Canada at 1-416-920-9567.
Most of these and many other relevant resources can be accessed through the CATIE Ordering Centre or by calling CATIE at 1-800-263-1638.