Sometimes drug companies set up more formal arrangements to permit access to experimental drugs before they are licensed. Such schemes must be approved by the Medicines Control Agency, and technically speaking, are a form of trial, because the company uses the scheme to collect information about the safety of the drug. Compassionate release schemes are a means of providing experimental drugs to individuals who have exhausted other treatment options, either because they cannot tolerate other licensed drugs, or because they have ceased to benefit from those drugs.

If you aware that a drug is being made available through a compassionate release scheme, it may require a bit of pressure to obtain it through your clinic if it is not one of the major treatment centres. This is because there are a number of procedures that must be gone through before you can get drugs in this way. If you decide that a drug being made available in this way is worth trying, you may have to raise the topic with your doctor. Not all doctors will know about the compassionate release scheme, and you may have to draw it to their attention. AIDS Treatment Update carries up to date information about the availability of drugs through such schemes, and it may be useful to show the newsletter to your doctor if she or he is hesitant about prescribing the drug in this way.

The next stage is for your doctor to approach the company. If your hospital has not already approved the scheme, the local hospital ethics committee will have to approve it, which may take weeks or even months. Only when this has happened is it possible for your doctor to apply for the drug. Once the drug company has received the application it may take some weeks for the company to supply the drug to the pharmacy at your clinic.

Drugs supplied through compassionate release schemes do not cost your clinic anything, since such schemes are defined as clinical trials and it is illegal to charge hospitals for trial drugs. Thus you will not be denied access to new and promising drugs on the the grounds of cost. However, you may find that the drugs are in short supply and that you have to wait along time to reach the head of the queue. Obviously this is very unsatisfactory for people who are already very ill, and if such delays happen to you, you may wish to seek the help of people who can advocate on your behalf either with your clinic or with the drug company. Contact the THT Lighthouse AIDS Treatment Phoneline on 0845 9470047 or the UK Coalition of People Living with HIV and AIDS Advocacy Project on 020 7564 2180.