You can not get a regular prescription for unapproved or experimental treatments. But there are several ways to get these treatments, including the Emergency Drug Release Program, friends, buyers’ clubs, and compassionate arms of clinical trials.
The Emergency Drug Release Program (EDRP)
This program allows your doctor to try to get experimental treatments that have not yet been approved in Canada. According to government regulations, you can get these treatments when there’s a medical emergency or when standard therapy is not working.
Currently, your doctor applies, on your behalf, to Health Canada’s Health Protection Branch (HPB) to get a particular treatment. Staff at the EDRP negotiate with the drug company directly. They authorize the drug company to release, on an emergency basis, new treatments that are not yet approved, including treatments that are being tested. Apparently, the HPB is prepared to release most treatments for HIV as long as:
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There is information available on what dose is safe
- Your doctor has tried all the standard treatments and they’re not working
- The people at the EDRP feel that your doctor knows what he or she is doing
The EDRP is making some changes. It’s possible that in the future your doctor may be able to negotiate on your behalf directly with the drug company, with the government playing a monitoring role.
The EDRP gives a drug company permission to provide you with a specific amount of a treatment. But the drug company does not have to agree. And there’s no rule about who’s supposed to pay for the treatment if it is released, so it may be up to you to pay for it. This means that you may not be able to afford some treatments.
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Friends and buyers’ clubs
Many people who have HIV or AIDS feel they do not have time to wait for officials to figure out what’s best for them. Some have found their own ways to get experimental treatments, such as sharing with friends. AIDS activists have worked hard to make it easier to get treatments. Many groups have networks to get certain treatments to people who have HIV or AIDS as cheaply as possible. In the USA, some private companies have been formed which sell treatments; these are called buyers’ clubs.
Buyers’ clubs do not all have the same source for treatments, so if you’re looking for a specific treatment, you may have to search for the right one. You have to pay for these treatments. Sometimes, in addition to getting drug treatments, you can buy vitamins and supplements at very good prices.
Compassionate Access
In order to find out how well a new treatment works and what it may have bad effects, researchers study the treatment in a clinical trial. Each clinical trial has rules that say who can and who can not join it. Sometimes, a trial will have an extra section or “arm,” called a compassionate arm (or open), to allow people who can not take part in the study to get the treatment being tested. Usually the treatment is provided free until it’s approved. Very few clinical trials have compassionate arms, and most of those that do are restricted. For example, you may only be able to get the treatment if your T4 cell count is below a specified amount, or if you can not take the standard treatment.