Program helps patients reconstruct their lives
Launched in 10 cities, with 10 more planned
Whether figuring out how to take a dozen pills each day or deciding whether to buy a house, the positive side effects of new HIV treatments have turned the lives of patients upside down. The phenomenon, known as the "Lazarus Syndrome," is so profound and emotionally complex that one of the nation's largest AIDS service organizations has developed a coping program that has been copied in at least 10 cities.
The program, known as "Reconstruction," is a joint effort of AID Atlanta, the drug manufacturer Hoffman-La Roche Inc., and the National AIDS Fund. Working primarily with patients referred from medical providers, the program provides a series of seminars on a broad range of topics, including medical overview of new treatments, the mental health aspects of moving from sickness to health, and financial planning.
"None of us were prepared to deal with the decisions that come from having renewed health," says Anthony Braswell, MBA, MHA, director of AID Atlanta. "Everything was set in a routine: As you got sicker, we did certain things for you, and you died. Now we are looking at people who have new opportunities, but the opportunities present a whole new slate of challenges. For example, a patient takes combination therapy and sees his T cells rise and viral load fall to levels not seen in years. Should he buy a house? Should he go off disability and look for a job? What kind of job should he get?"
AID Atlanta began the program last year as a town hall meeting to find out what topics were most important to people living with AIDS in the new era of highly effective antiretroviral therapy. They expected a few dozen people, and nearly 200 showed up. The agency developed a curriculum for the program based on the concerns and needs they expressed.
"There has been a lot of attention focused on AIDS patients who have been brought back to life as a result of protease inhibitor therapy," says Mark King, director of education at AID Atlanta. "This is wonderful news, of course, but people with AIDS want to know, 'What do I do now? Can I trust this recovery? Should I got back to work? If I have a longer life ahead of me, what does this mean to my relationships?' The Reconstruction project was designed to help them sort through these issues and carefully weigh their options."
Attempting to overcome the perception that the battle against AIDS has been won, the program emphasizes the importance of continued prevention practices and adherence to drug regimens. It also allows clients to talk about the psychological struggles of shifting from a mindset that was framed by the specter of death and pain to one that promises health and a future.
"We are encouraging people to operate under the assumption that they are going to be here for awhile," Braswell says. "We talk about therapies, how much is too much in the way of pills. We talked about side effects, the nausea, diarrhea, juggling diets - those are real issues clients are having to face that before weren't as big a deal."
That may sound simple, but many AIDS patients' lives were built on assumptions about a disease that seemed to doom them to a short, unhappy life. Shifting from that paradigm to a realization that one might now live 20 more years can be as traumatic as accepting that one might live for two months, King says.
The program is made up of six forums, each of which lasts about two hours and is lead by experts who provide guidance on subjects including a medical overview of new combination therapies and career re-adjustment.
Many Reconstruction participants hear about the program through their health care providers, and are not representative of AID Atlanta clientele, Braswell says.
"We have gotten referrals from people who wouldn't be coming to AID Atlanta for any other reasons," he explains. "The typical program client is someone who has insurance, who either quit his or her job or has gone on disability, and who all of a sudden is having to deal with having to go back to work again."
So far, several hundred clients in Atlanta have gone through the program. With funding from Hoffmann-La Roche, Reconstruction was launched in 10 cities early this year (Austin, TX; Birmingham, AL; Ft. Lauderdale, FL; Jersey City, NJ; Kansas City, MO; Milwaukee; Nashville, TN; Portland, ME; Sacramento, CA; and Tacoma, WA). Ten more cities are targeted for launching the program next year. AID Atlanta also has disseminated Reconstruction kits across the country, providing agencies with resources culled from community and government experts, as well as with lists of suggested speakers and handout materials, King says.
[Editor's note: For more information about Reconstruction, contact Mark King, director of education for AID Atlanta, at (404) 872-0600 or via e-mail at firstname.lastname@example.org.]