Keeping an HIV Treatment History

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Recording Your HIV Treatment Choices

This is an adapted selection from Introduction to ART, a booklet published by HIV i-Base, a British treatment activist group, which is also available in a pocket version.

Check out the booklet for handy forms you can print and use for keeping your own treatment history!

Why Keep a Treatment History?

Keeping a record of your treatment history can:

  • Help you understand your health and treatment.
  • Help if your doctor changes at your clinic.
  • Help if you speak to other health care workers or to a treatment advocate for advice.
  • Help if you ever change hospitals or clinics, if you want a second opinion, when on holiday or abroad or if you move to another country.

History Matters

Any treatment choice for your future care is closely linked to your previous treatment history. This includes results from blood tests like the CD4 count, viral load and resistance tests, as well as the history of drugs you have used and your reasons for changing them. As treatment improves you could need this record for 20 years or more. This history will inform whether you can use new drugs in the future. This record is important.

Changing Clinics?

If you change clinics you should ask for your medical records to be forwarded. Because this does not always happen or is delayed, make sure that you have a record of your hospital or clinic number. Your own notes will help provide a useful record in all these situations.

You Have the Right to Your Own Records

Your doctor can help you to fill in these pages but it does not replace your medical notes. All patients have the right to see their medical records. You can also make photocopies but you need to let the clinic know beforehand. If you are changing clinics, it is sometimes easier to take a summary copy of your notes with you.

CD4 and Viral Load Results

These blood tests are used to monitor your health and your response to treatment.

Even rough figures from your previous history are useful and your doctorcan provide you with these.

The lowest CD4 count and highest viral load results when you were first diagnosed and before you started treatment are the most important.

  • The CD4 count checks your immune system.
  • The CD4 percentage (CD4%) is similar to the CD4 count but is more stable, so helps interpret changes in the CD4 count.
  • Viral load measures the amount of HIV in a sample of blood. It shows how well ART is working.

Antiretroviral (ARV) Treatment History

Your choice of new and future drugs will depend on the drugs you have used in the past and the reason you stopped using them.

It is important to know whether you stopped earlier drugs because of drug resistance or side effects.

If you can't remember exact details, even rough dates are useful (i.e. taking efavirenz for a month in 2014, etc.)

Pictures of the most common drugs with their different names are inthe ARV Chart in the HIV i-Base Introduction to ART guide.