Saturday, November 27, 1999

treatment improves,
fewer are taking

Death rate slows, but stress,
poverty and depression increase
for people living with AIDS

By Duane Peterson
Special to the Star-Bulletin


ON June 5, 1981, the Centers for Disease Control and Prevention published what would be the first report of the AIDS epidemic based on five cases of Pneumocytis carinii, a rare type of pneumonia reported by two doctors from Los Angeles.

As we recognize World AIDS Day on Wednesday, more than 410,000 Americans have died from this disease, 1,400 in Hawaii. Examining a global perspective, by 1998 it was estimated that 33.4 million adults and children were living with HIV/AIDS worldwide.

It is clear that, in the last three years, great advances have been made in development of new treatments, which have dramatically reduced the number of deaths and specific infections caused by HIV.

However, while the media have heralded these advances, they have underreported the impact this disease continues to have on our local, national and global community. This has resulted in generating public misperception that researchers are on the brink of a cure for AIDS, when in fact it has, at best, become a more manageable chronic disease.

The impact of AIDS on Hawaii residents has differed from the mainland in some ways, yet many of the trends and resources needed to adequately respond to future needs are similar.

Although the exact figure is unknown, the state Department of Health estimated in a 1997 report that there are 2,300-3,200 people in Hawaii living with HIV or AIDS. Many of these people do NOT know that they are carrying the virus.

The majority of Hawaii's AIDS cases are Caucasian. However, over time, each Asian and Pacific Islander group's proportion of cases has been increasing, while the Caucasian proportion has been declining. As on the mainland, women are a small but increasing minority among Hawaii's AIDS cases.

In September, the CDC issued studies demonstrating that treatment for AIDS has slowed the death rate of those infected by HIV, but also seems to be leading some people to rely on the treatments rather than prevention.

The CDC reported that AIDS deaths dropped 42 percent from 1996-97, but just 20 percent from 1997-98. This illustrates that the dramatic success of current treatment appears to be reaching a plateau.

The reasons for this leveling off are difficult to accurately define. However, both researchers and doctors have noted a number of issues that have complicated progress in AIDS treatment.

Whereas four years ago physicians' treatment of HIV/AIDS was focused primarily on "putting out fires" in the form of opportunistic infections and pain management, they are now spending a greater portion of time dealing with other issues, such as depression and the debilitating drug side effects, which include fatigue, nausea, weight loss and anemia.

The stress of coping with these side effects -- as well as the complicated regimen of pills -- has led a growing number of patients to have difficulty adhering to their drug regimen or to completely stop drug treatment.

Not only does this allow the virus to thrive, but drug-resistant strains of the virus are emerging as patients fail to take their medicine correctly.

According to Dr. Drew Kovach, director of HIV Services for Kaiser Permanente Hawaii, "I think the greatest challenges faced by persons living with HIV/AIDS is dealing with the impact of this disease on all aspects of their life. It is a disease that affects relationships, ability or inability to work, and by its chronic nature causes significant depressive symptoms.

"The burden of dealing with manifestations of the disease even with (the virus') suppression is at times difficult, as well as the side effects of the medicines used for this...suppression. Not feeling well much of the time takes a great toll on people's energy reserves.

"The uncertain future is an additional stressor in most patients' lives. About 30 percent of my time is now spent working with anti-viral medications and laboratory studies. The remaining 70 spent treating people living with HIV as whole people and trying to make them whole -- body, mind and spirit. Time and energy are needed for both the patient and the health-care provider."

As people are living longer, treating the emotional issues of this disease is gaining increasing importance. These emotional problems stem from far more issues than coping with long-term medical treatment.

For many people living with AIDS, while the quality of health care has improved, their quality of life has not. Many of the newly diagnosed are able to maintain employment, but a considerable portion of people living with AIDS are unable to work and have incomes that fall below poverty lines.

This is clearly seen among clients of the Life Foundation, Hawaii's largest AIDS service organization. Of the 502 clients accessing services as of April 1999, 299 or 45.6 percent reported incomes of less than $10,000 per year and an additional 48 or 9.6 percent reported no income at all.

While these numbers represent only a portion of people living with HIV/AIDS in Hawaii, they are representative of people seeking HIV-related services. In contrast, the need for basic services such as food and housing continues to outweigh the available resources.

John Manion, founder of the Food Basket, an organization that provides free grocery distribution for people living with HIV on Oahu, states, "One of the greatest challenges for people living with HIV in the '90s is poverty. Most nutritionists concur that people living with HIV need 11/2 to 2 times the amount of protein and calories than others. The Food Basket was founded to address these nutritional needs and continues to grow, serving approximately 150-175 clients per month."

Other than drug treatment and social services, what action can be taken to fight AIDS at this juncture of the epidemic?

Despite the declining mortality rates reported by the CDC, the estimates of reported new infections nationwide are holding steady at roughly 40,000 a year for the last decade; so prevention remains a top priority.

The variety of programs and events taking place on World AIDS Day allows people in communities throughout the world not just to gain awareness about AIDS, but an opportunity to examine their own feelings about the disease.

Much of the stigma associated with HIV and AIDS has originated in the public misperception that contracting HIV is something that only affects certain groups of people and could never happen to them.

To refute this perception, at the beginning of the opening ceremonies of the 1996 International AIDS Conference in Vancouver, British Columbia, an older woman from Vancouver approached the podium and announced to the thousands of delegates from throughout the world that she too was a person living with AIDS.

She said, "I am constantly asked, 'How can a 62-year-old grandmother get AIDS?' My response is always the same. I look them straight in the eye and say, 'It just doesn't matter.' "

Duane R. Peterson is a member of the board of directors
of the Food Basket and the Hawaii Episcopal
Diocese AIDS Task Force.

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