AIDS Drug Extends Lives but Poses Challenges
A miraculous drug treatment that greatly reduces the effects of the AIDS virus is allowing patients to live longer, but the support network for Ventura County’s AIDS community may be unprepared for the expanded caseload.
The widely heralded new treatment known as protease inhibitor cocktails, which can suppress the AIDS virus to the point of being undetectable, significantly alters the demand for health care, fund-raising efforts and support groups.
“What we’re seeing is a new phase in this disease,” said Martina Melero, a public health nurse with the HIV/AIDS Center who coordinates the Ventura County AIDS Surveillance Program. “It’s becoming more of a chronic illness, such as diabetes or arthritis, where you take medications and monitor your health for a long period of time.”
With AIDS patients living longer, Melero said they will require more follow-up visits, lab work and treatment over a longer period of time.
According to a surveillance report Melero compiled Friday, there have been 644 cases of acquired immune deficiency syndrome reported in Ventura County since statistics were first compiled in 1982. Of that number, there have been 409 AIDS-related deaths. As of Dec. 31, 1996, there were more than 97,000 AIDS cases reported in California.
The Ventura-based HIV/AIDS Center, which helps patients manage their health care and provides benefits counseling, early intervention and partner notification services, is beginning to see a decrease in patients suffering some of the late-stage complications of AIDS.
“The same number of people are still infected,” Melero said, “but they are just not progressing to full-blown AIDS cases.”
The expectation is that late-stage complications--such as blindness or Kaposi’s sarcoma, a type of cancer particular to AIDS patients--would not set in as quickly, said John A. Zaia, director of virology and infectious diseases at the City of Hope, a medical and scientific research institute in Los Angeles.
“The total pool of HIV-infected people may end up increasing over time, because we will no longer be losing patients,” Zaia said. “But from a humanitarian standpoint, this is an improvement. We would then try to develop better ways to manage these chronically infected people who require medicine.”
But protease inhibitor treatments, a combination of three drugs taken in pill form, are not without problems. In addition to about $15,000 per year for the medication, Zaia said there is also a problem with people ending treatment after the virus has been reduced. However, if treatment is stopped, viral counts immediately increase and treatment may not be as effective once resumed.
Another drawback of the drugs’ phenomenal success is that a growing number of people think it’s an AIDS cure and therefore no longer feel compelled to donate to AIDS agencies, said Art McDermott, program manager for the Ventura County AIDS Partnership program.
“The public has heard about them and how good they are and in some people’s minds AIDS is now taken care of, which is very, very wrong,” McDermott said. “What’s really happening is that providers are not only seeing more new clients, but because of these drugs their old clients aren’t dying as quickly--so caseloads are going up.”
McDermott said he takes every opportunity to educate donors that protease inhibitors do not cure AIDS and that the demand for donations is even greater than before.
The AIDS Partnership program, which began a year ago under the direction of the United Way, raises money for local AIDS agencies.
One of its recent projects was to apply for a $150,000 federal grant for the Public Health Department and the Ventura County Community Foundation, which would enable them to open an AIDS clinic in Thousand Oaks, Moorpark or Simi Valley.
Many AIDS experts say the use of these drugs has spurred another interesting dilemma for those with AIDS.
“For so long, patients have been preparing for their demise, for their death, that turning around and dealing with their lives has created problems for them,” Melero said.
As more people using the inhibitors begin getting healthier, the shift in client needs will be tremendous, said Diane Seyl, AIDS coordinator for public health nursing in Ventura County.
“The issue is that people are feeling better and can go back to work, so there is a whole restructure of thinking and planning that needs to occur,” Seyl said. “In the past, people went on disability and it was permanent.”
Seyl said AIDS service organizations are just now starting to see people get healthier, now that the treatment has been in general use since last summer, and that this has prompted discussion about the need for more back-to-work programs.
“AIDS organizations will be looking more at job finding and getting people working rather than getting them on Social Security,” Seyl said.
With a longer life expectancy, AIDS patients must now reevaluate their future.
“It’s a struggle for a lot of people to deal with this all at once,” said Doug Green, director of AIDS Care Inc. “I heard someone recently on the radio describe it by saying, ‘The thing I miss most is the serenity of hopelessness.’ People had gotten into this thing of living for the moment and not having a whole lot of hope for the future.
“Now with the possibility of living much longer with new drug treatments, it becomes important to not just think about the moment, but how things are going to be next year, five years from now, maybe 10.”
Green said that some clients who had only expected to live a few years had sold their life insurance policies and cashed in all their assets. “And now they’re faced with the possibility of having to think about their retirement,” he said.
Marggie Valentine, a marriage and family counselor with the HIV/AIDS Center’s Early Intervention Program, said it is an emotional roller coaster for clients.
“They go through grief and denial when they’re first diagnosed as being terminally ill and then there is doubt about whether the medications will work,” Valentine said. “But it could take weeks or months for them to adjust.”
To determine their clients’ new counseling needs, AIDS Care has been conducting focus groups, interviews and surveys.
AIDS Care, which began in 1986, provides free educational and practical support such as case management, counseling, a food bank, legal services and financial assistance.
Carol Strauch, an AIDS Care client, has been using protease inhibitors for two months. The single mother of two, who was diagnosed six months ago as HIV positive, said she is confident she can stay alive long enough for scientists to find a cure for AIDS.
“As long as I continue to eat right and take care of myself and have a positive attitude, [the doctors] don’t see me becoming an AIDS patient for at least 15 years,” she said.
Strauch, 35, said she first knew something was wrong when she became extremely ill last summer and had a 105-degree temperature for 10 days.
“Since I had tested negative in the past for HIV, I didn’t even consider it,” she said. “Then after talking with another lady who is HIV positive and about her symptoms, I figured out that’s what it was.”
Strauch contracted the virus about three years ago while having unprotected intercourse with a man who told her he was HIV negative.
As her 8- and 10-year-old children have met people at AIDS Care who have lived with the disease for more than a decade, they, too, have also become more optimistic.
“They realize I’m not going to fall apart next week and be in the hospital,” she said.
Strauch said her children, Christopher and Camille, remind her daily to take her pills--a total of 17. “I’m on a strict regime, three times day, for the rest of my life,” she said.
The HIV/AIDS Center’s Early Intervention Program assists Strauch with the $1,200 it costs for medication each month.
Strauch, who volunteers for AIDS Care’s food bank, said that she has had minor problems with dehydration, but hasn’t suffered the nausea, cramping and migraine headaches other patients have complained about.
“It seems like the women I’ve talked to aren’t experiencing the side effects as much as men,” Strauch said. “My health has improved a great deal and I’ve taken steps to improve my diet, [the] amount of sleep and work on stress reduction.”
Through a group called Positively Speaking, Strauch speaks to high school groups about the possibility of contracting AIDS.
“I didn’t necessarily fit into a risk category,” she said, “but here I am.”
(BEGIN TEXT OF INFOBOX / INFOGRAPHIC)
AIDS Cases in County, 1982-97
Newbury Park: 23
Port Hueneme: 31
Santa Paula: 18
Simi Valley: 76
Thousand Oaks: 73
Source: Ventura County AIDS Surveillance Program