The second decade of this epidemic finds increasing numbers of people alive and doing well many years after learning that they are HIV sero-positive or have been diagnosed with full blown AIDS. There are a variety of categories of long term survivors. One is the individual who has a confirmed exposure to HIV for many years and is completely asymptomatic. Many people, myself included, know that they have been exposed to HIV for years and have mild symptoms of being immune-compromised. Blood samples I gave as part of the New York Blood Center's Hepatitis B study in 1977 were frozen and after the development of the HIV test, were tested for the HIV antibodies.
Dr. David Ho of the Aaron Diamond Research Center at New York University Medical Center published a study in which he reported that 5% (1 in 20), gay men who had a confirmed exposure to HIV for at least ten years were not showing any indications of HIV disease progression. He labelled these individuals "nonprogressors." People like myself, who have a documented exposure to HIV for at least ten years, who remain perfectly healthy, but do show some indications of immune suppression, are now being referred to as "slow progressors." Long term survivors refers to individuals who have been diagnosed with an AIDS defining opportunistic infection for at least three years and are doing well with "a reasonably good quality of life." (Whatever that imprecise term means!!)
Since I have been exposed to HIV for at least nineteen years, I get really angry when the media discusses infection with HIV as "invariably leading to death," as it often did following Magic Johnson's announcement about being HIV infected. This kind of repeated media message can have a devastating effect on people living with HIV or AIDS who are not dying of the illness. With more people getting tested, learning that they are infected and taking agresssive measures for early intervention and prophylaxis to prevent the onset of various opportunistic infections, the numbers of people infected with HIV who are alive and well for many years is steadily increasing. With the new class of anti-retroviral drugs Protease Inhibitors available and bringing individuals' viral loads to undetectable levels, there is every reason to assume that increasing numbers of people will be living longer, and living well with HIV, and outliving the prognosis.
Research conducted by the late Lew Katoff of GMHC, Bob Remien and Judy Rabkin of Columbia University have identified certain characteristics of long term survivors. These three researchers found that the long term survivors they studied were good consumers of medical care who were active participants in their medical care, and reported having excellent relationships with their doctors. Many had changed doctors early on to find the right relationship. These survivors had created a relationship with their doctors that was one of balance. People who knew themselves to tend toward denial had chosen more treatment-agressive doctors. Treatment activists relied on the cautions of more conservative doctors.
The research also discovered low rates of current clinical depression in these long term survivors. These survivors also scored high on hopefulness. There was a lack of denial as a coping strategy. They were pragmatic and interested in the quality of their life as opposed to the quantity. They also did not necessarily consider AIDS to be a death sentence. They live with the ambiguity of having a life threatening condition day by day. They continue to set goals for themselves, although not necessarily long term goals. They also report experiencing the phenomenon called "desire to live," and take an active role in staying alive. In summary, these long term survivors are very self-empowered individuals.
The concept of hope is one of the most useful to individuals who are successfully living with HIV or AIDS. While most people maintain some hope for a cure, hope often becomes focused on preventing the debilitating infections that so often are a hall mark of HIV infection. Hope is also about being able to maintain a meaningful quality of life. For people with HIV or AIDS who have taken care of a lover or numerous friends who also had AIDS, their hope is to be adequately and lovingly cared for in the event of serious illness or debilitation. Hope may also focus in on not suffering or experiencing pain. In addiition, hope often beomes directed towards achieving a specific goal, that once reached becomes the impetus for setting additional goals.
Many long term survivors know all too well from having been care-takers to loved ones with AIDS what the advanced stages of this illness can bring. It is not uncommon for some long term survivors to have outlived their entire friendship network. If they themselves were ill while they cared for a loved one or loved ones who were dying of the same illness that they were struggling with, this can contribute to depression or hopelessness regarding their own chances for survival or being lovingly cared for. This is one situation where support groups and concrete assistance from AIDS service organizations becomes invaluable to maintaing hope and a good quality of life.
As diagnosis of, and treatments for opportunistic infections become increasingly more sophisticated, people with AIDS live longer. There are increasing numbers of people who have survived numerous life-threatening illnesses. These people have had repeated hospitalizations, during some of which they may have come very close to death. Surviving one near death experience can have a profound effect on the way a person lives his or her life. Though some people do spring back to their former energy level, and to the mental and emotional state they were in prior to the near death experience, most people emerge feeling scathed and more fragile as a result of surviving a near death situation. At the same time that the awareness of life's fragility increases, so too does the value of each moment and day.
It has been my experience that each time a person with AIDS emerges from the ICU or hospital when there was the distinct possibility that they might not have survived, they have less energy in general, and reevaluate their committment to fighting for their life. Some people emerge from a near death experience with a renewed exuberance for life and a rededication to doing everything necessary for their condition. The people who can honestly acknowledge their decreased energy levels or progressive debilitation, and make the appropriate accomodations to these changes in their health status, and then prioritize what they still wish to do within these diminished parameters, are the individuals who continue to feel that they are living as fully, richly and serenely as possible.
At the same time realistic doubts about one's ability to deal with the concrete necessities begin to crop up. In addition an indiviudal's psychic energy is often depleted after such an experience. The meaning of continuing the struggle is often questioned and reevaluated. This is not necessarily defeatism on the PWA's part, but may signal acceptance of the final phase of his or her life in a realistic way. This is where a loving support system is important to reassure the person that indeed he or she is still valued and loved, even if they are more in need or dependeant upon others due to his or her illness. At the same time this is the time when a PWA needs to discuss his or her feelings about what defines a meaningful quality of life for them.
From the onset of this health crisis people living with AIDS and HIV and those who cared for them personally and professionally, embarked upon a journey that brought us into new and uncharted territories. This continues to be the reality for thousands of individuals who are outliving all the projections of their life spans. We need to grow comfortable looking around to see who are the role models. Then we need to continue to engage one another in discussions that acknowledge each other as pioneers and explorers of living meaningfully and with dignity with HIV/AIDS.
Published in PWA Newsline in 1992, and revised in May, 1996.
© 1996 Michael Shernoff