Agressive Treatment Participation and Prepardness

Having HIV for over 20 years has allowed me to see the growth of patient knowledge and treatment participation, setting an example for others. Educating yourself about your disease, staying up to date and aggressively participating in your treatment plan is vital. Aggressive participation includes complete pill compliance, showing up for all appointments and labs and keeping copies of important records and results at home.

Being an active participant will serve you well in many situations. Medical emergencies can happen while away from home such as cruises, vacations and work travel. If you find yourself in the unfortunate situation of being incarcerated, knowing your medical information is vital.  When you are being interviewed by jail or prison medical staff, you will need to have exact medical names for meds, dosages, recent lab results, secondary illnesses, your primary care physician and specialists' contact information. Prison and jail staff will not make any effort to track down info for you. You need to make sure all of your chronic issues are listed from the get-go in your file. Jails and prisons avoid new diagnosis' because diagnosis requires treatment and treatment is expensive. They save dollars by avoiding or prolonging diagnoses.

If you have the luxury of knowing in advance you may be heading to a period of incarceration, take advantage of it.  Take care of your eyes by getting any prescription eyewear (transition lenses are a good idea), dental for sure and of course update and chronicle all your chronic issues. If you find yourself surprised by incarceration, hopefully you have been active and up to date with all your medical and dental needs. Providing medical treatment is very expensive for them so supplying them with your medical info from the start will help you a lot. Prisons and jails avoid diagnosing any new issues and are slow with treating chronic ones. Always be polite, humble, thankful and informed. Pick your battles. Understand the term, “community standard of care”. Know your grievance system. Document EVERYTHING. Save your copies of “Health Needs Requests” or whatever health care requests are called in you unit. Have the contact info for a “Med Mal” medical malpractice attorney. 
If needed, family, friends and attorneys can hold on to copies of your medical files at home and mail to facility.  If the mail room at the facility tries to block it from coming in, have your attorney send it in "Legal Mail". Legal mail is protected and cant be read or reviewed by jail or prison staff.  The legal mail system is invaluable. Legal Mail is an envelope addressed to you with your attorney's return address on the outside AND when opened and casually flipped through does not contain contraband (i.e. inappropriate photos). Medical files are legal mail allowable.Keep family and friends involved as outside pressure helps. Remember, HIV/AIDS treatment often involves newest cutting edge treatments but that is NOT community standard of care, which is often 1-2 years behind and sometimes never catches up. Get ready for bare bones medical response. I say “response” because often, prison and jails do little prevention and mostly response…slow response.