For these patients, brief explanations about what the doctor is looking for will suffice, followed with a more in-depth discussion of treatment options once a diagnosis has been made. Determining which role you want to play does not mean that you need to be bound to that role irreversibly. Most people, no matter how large a part they want to play in managing their health care, will at times find this role, and the information that comes with it, very scary and threatening. The emotional impact of such information should never be minimized, no matter how active you are in your health care. In addition to determining how active you want to be in your health care relationship, you need to decide the general philosophical approach you think you will want to take in terms of treatments.
Some people feel most comfortable following the standard of care in the medical community.
At this time, that would include such suggestions as starting AZT when your T-helper cell count has fallen below 500, and prophylaxis for pneumocystis pneumonia if the count falls below 200. Most often, the standard of care includes FDA approved drugs or treatments for which there is much data supporting safety and effectiveness. Other people want to try new treatment approaches which have not yet been proven to be effective. Some recent examples of drugs which fall into this category include compound Q and oral alpha interferon. Finding a doctor who is already participating in clinical trials or who is willing to refer you to local trials will be important for patients who want to access potentially effective new treatments in this way.