Getting the same anti-epileptic drugs every time

Introduction

Epilepsy Action believes it is important for people with epilepsy to have exactly the same version of their anti-epileptic drug (AED) every time they pick up a prescription. We explain why.

• Why do some drugs have more than one name?
• Generics and generic prescribing
• Parallel importing and other imported drugs
• Why is it important to get the same version of my anti-epileptic drug (AED) every time?
• How do I get the same version of my anti-epileptic drug (AED)?
• What if I can’t get the same version of my anti-epileptic drug (AED)?
• How can I officially report problems with my anti-epileptic drug (AED)?
• Changes to the law

Why do some drugs have more than one name?

Most drugs have a generic name and a brand name. The generic is the same as the name of the main ingredient of the drug. The brand name is given by the drug company. For example, carbamazepine is the generic name and Tegretol is the main UK brand name, given by the drug company.

You may also come across drugs with other names because they have been brought in from abroad. These drugs are known as parallel imports.

Generics and generic prescribing

The drug company that first makes the drug owns the ‘patent’ (exclusive right) to make it. They also give the drug its main brand name. After a number of years (usually 10-12), the patent runs out. Once this happens, other companies can make their own version of the drug. These other versions are known as generics. Generics might be a different shape or colour to the main branded drug. The other drug companies may also give the generics different brand names. For example, there is a generic version of carbamazepine called Epimax.

Generic prescribing is when your doctor writes only the generic name of your AED(s) on your prescription. This means the pharmacist can give you any version of your AED(s) made by different drug companies. They may therefore choose a cheaper version, to keep costs down.

Parallel importing

Some drug companies make the same drug at factories in the UK and abroad. For example, the anti-epileptic drug (AED) Tegretol is made in a number of countries as well as the UK. Parallel importing is when a drug wholesaler buys from a drug company’s overseas factories to supply to UK pharmacies. So, if you are prescribed Tegretol, it could have been made in a number of countries, including the UK, Netherlands and Italy. 

There are a number of things that could indicate that your AEDs are parallel imports. For example, the packaging may look different or have wording in another language. The drug might also have a different name. For example, a slow release version of the generic drug carbamazepine, called Tegretol Retard in the UK, is called Tegretol Divitabs in a number of European countries.

You might be given a parallel import if the wholesaler that supplies your pharmacy can buy a particular drug from abroad more cheaply than they can buy it in the UK.

Does it matter if I get a parallel import?

In theory, a drug with the same brand name, such as Tegretol, should be the same, whether it is made in the UK or another country. However, a number of people have reported problems with their epilepsy when they have been given parallel imports. This may be because there are very small differences in the overall make-up of the drugs from the ones that they have been used to. Or it may be that the worry of being given a different version leads to stress and anxiety, which in turn could trigger a seizure. Quality is also a concern with parallel imports as they may not always be stored in perfect conditions during the import/export process. 

Other imported drugs

Some drugs, available on prescription in the UK, have to be imported because they are not made in the UK. An example is the AED topiramate (UK brand name Topamax). 

Why is it important to get the same version of my anti-epileptic drug (AED) every time?

A number of people, who have switched between different versions of AEDs, have reported an increase in side-effects. They have also reported having more, or different, or breakthrough seizures.

In Epilepsy Action’s 2005 Anti-epileptic Medication Packaging Survey, 30 per cent (a third) of people were given different versions of their AEDs. Of these, 23 per cent (nearly a quarter) said their epilepsy was worse as a result. This means that out of every 100 people, an average of seven are likely to have problems.

Having a breakthrough seizure can have a major impact on someone’s life. It can mean the loss of driving licence for a year and, for some people, it may mean loss of employment. The seizures themselves may be unpleasant or cause injury. And, rarely, seizures can be fatal.

An increase in side-effects can also bring major problems. Unwanted side-effects can affect learning, work and social life.

Not all healthcare providers believe that taking a different version of AEDs can affect someone’s epilepsy. However, the National Institute of Health and Clinical Excellence (NICE) supports Epilepsy Action’s concerns. NICE recommends that people with epilepsy continue to get the same make of AED wherever possible. NICE is an organisation that provides guidance on treatments and care for people using the NHS in England and Wales.

How do I get the same version of my anti-epileptic drug (AED)?

The most reliable way to get the same version of your drug is to ask your doctor to prescribe by brand name. The current law says that if the brand is written on your prescription, the pharmacist must give you that specific brand. If you are already taking an AED without a brand name, and are happy with it, you could ask your doctor to write the name of the drug company, as well as the drug name, on your prescription. Although you can ask your doctor to write ‘no parallel imports’ on your prescription, your pharmacist doesn’t have to take any notice of this. However, many pharmacies will do their best to help their customers, so it may still be worth asking your doctor to do this. 

What if I can’t get the same version of my AED?

There are some circumstances where it can be difficult, or impossible, to get the same version of an AED. For example, your pharmacy may decide to buy in their drugs from a different wholesaler. If you have to change to a different version of your AED, you could keep a chart or seizure diary to record any changes to your seizure control or side-effects. You may then want to show this to your doctor so they can review your treatment and advise you on the best course of action.

How can I officially report problems with my anti-epileptic drug (AED)?

You, or your doctor, can report any problems with your AED(s) to the Medicines and Healthcare Products Regulatory Agency (MHRA), using the Yellow Card Scheme. Yellow Cards are available from your GP, pharmacist, NHS Direct or the Yellow Card hotline. You can also download or complete a Yellow Card online.
Yellow Card: hotline: 0808 100 3352; www.yellowcard.gov.uk

Changes to the law

In 2010 the law may be changing. As part of the Pharmaceutical Price Regulation scheme, pharmacists will be required to give their patients the cheapest version of a drug, even if a specific brand name is given on the prescription. Epilepsy Action is campaigning to persuade the government to make anti-epileptic drugs an exception to this rule.

We understand that the Department of Health will be consulting with patients and patient groups on this issue, early in the new year. This will mean these proposals will not come into effect in January 2010 as planned, but may be delayed until later in the year.