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Numbers don't tell the whole story, activists say One hundred thirty-two. That's how many people in the Rogue Valley have had AIDS over the past 20 years. More than 120 men and 10 women. Sixty-seven of those people have died. Those are official statistics based on the number of cases reported to the Jackson County Health Department. But ask those close to the AIDS front locally, and they'll tell you the numbers do not add up. "I can probably name 132 people who have AIDS," says Lannie Thompson Kali, until recently director of the Abdill-Ellis Community Center, an Ashland community outreach center for gays and lesbians. That's 132 people who are alive today and whom she knows personally. She won't speculate on the number of actual cases, but longtime AIDS activist Lee Berry of Rogue River will. It's more like 1,500, he says. And going up every day. There are several reasons why Southern Oregon cannot get an accurate count. Al Solochier, HIV/AIDS program coordinator for the county Health Department, says the count of 132 is accurate. But it reflects only the number of people who were diagnosed or treated here. The number does not include people who move to the area, are already infected and never seek treatment, Solochier says. Kali agrees. "A lot of people move into the area and still get treatment in the San Francisco Bay area," she says. "People who are partnered and retired come here." But Southern Oregon has only one specialist in infectious diseases and lost its only doctor who specialized in HIV and AIDS when Providence Medical Center closed its Southern Oregon HIV Center in 1998 after just six months. The number also doesn't include people who travel to other counties to be tested and treated because they fear what might happen if their friends and neighbors in Jackson County find out they have AIDS. "Telling someone you are HIV positive is like telling someone you're gay," Kali says. "There are not many people who are 'out' here, and there are even fewer people who are 'out' and have AIDS." Another reason it's so hard to estimate the number of AIDS cases here has to do with Oregon's anonymous testing. Since people who test positive are identified only by numbers - not names - it's impossible to tell who has been tested and how many times. That will change in October when a new law goes into effect that will link people who receive state and federal aid for HIV and AIDS with a name identification system. If Oregon had not passed the law, it may have risked losing federal funds. Most of the state's HIV/AIDS patients receive money from the Ryan White Bill, named after the 13-year-old who was infected in a blood transfusion and became an activist for those with AIDS. The amount each state receives is based on the number of cases, and without some kind of tracking by name, Oregon had no way of preventing people from registering for aid more than once. The names will not be made public, but there is some fear that people will avoid being tested - and labeled - if they know their name and AIDS status is in a file somewhere. Dr. Deborah Topham, a nursing professor at Southern Oregon University and a provider of independent AIDS outreach, says she believes people will adjust. She points out that there have been similar fears when the laws changed for tracking such socially unpopular diseases as syphilis and gonorrhea. Even tuberculosis now has a name-identification system in many states, where social workers keep tabs on people with the disease to make sure they are taking their medication. "It will take some getting used to, but people eventually will accept it," Topham says. It may scare some people away, but she believes those who have the highest risks will continue to be tested. "There's a great need for a name-identification system so we can start getting accurate numbers of those with HIV," Topham says. She won't estimate what she believes the actual number is, but says when she first moved to Ashland from Wisconsin, she thought the AIDS count was too high. "After being here a short while, I thought it was too low." Even if Jackson County had a better tracking system, and even if every person with HIV or AIDS stood up to be counted, the number of cases in the Rogue Valley would still be inaccurate. There are friends and neighbors and business associates who have been infected, possibly for years, and have no idea they are carrying the virus. Every day, one may pass that virus on to someone new. And the number will change. SOU student John Parman gathered information for this story. Questions and answers about HIV and AIDS June marked the 20th anniversary of the discovery of AIDS. In those 20 years, more than 47 million people have been infected. More than 21 million have died. Despite the numbers, AIDS continues to be a misunderstood illness. Here are answers to some common questions about this illness. Where did AIDS come from? AIDS - acquired immune deficiency syndrome - was first diagnosed in the United States in June 1981. HIV - the human immunodeficiency virus - is the virus that causes AIDS. It's not clear how long HIV has been present in the human population. HIV has been found in tissue samples taken as early as 1959 from a man in Zaire, now known as the Congo. Similar viruses have been found in primates, although it hasn't been proven that's where the sickness came from. The origin of HIV and AIDS remains a mystery. How is AIDS transmitted? HIV can be transmitted from one person to another in many ways. Two of the most common are through sexual contact and by sharing needles used to inject drugs. It can also be transmitted from a pregnant mother to her unborn child, as well as through breast-feeding. What is HIV? HIV is a virus that encodes itself into human DNA. It uses the body's own cells to reproduce itself. The virus replicates until the immune system is weakened to the point that the body can no longer fight off infection. How does HIV lead to AIDS? There are four stages of HIV. The first is the primary infection stage, in which the virus is transmitted from one person to another. Infection is often accompanied by a short flu-like illness, but the vast majority of people don't know they've been infected. The second stage is the clinically asymptomatic stage, in which a person is infected with the virus but has almost no symptoms. The person might have swollen glands during this stage. This stage can last as long as 10 years. The third stage is called the symptomatic HIV infection stage, in which the body's immune system begins to fail and physical signs of the disease are present. Besides fatigue and chronic pain, someone in this stage may suffer from such conditions as pneumonia, tuberculosis and non-Hodgkin's lymphoma. The fourth stage is the progression from HIV to AIDS. A diagnosis of AIDS is made when the body's immune system is so weakened that it develops one of a specified group of AIDS-related diseases such as cancer. What are the symptoms of HIV? Symptoms range from rapid weight loss to recurring fever, unexplained fatigue, pneumonia, swollen lymph glands, memory loss and depression. The only way to know for sure if you've been infected is to have an HIV test. What does an HIV test do? An HIV test detects antibodies to HIV in the bloodstream. If the antibodies are there, the test is positive, and a diagnosis of HIV can be made. According to Al Solochier of the Jackson County Health Department, about 80 percent of people form HIV antibodies within three months from the time they are infected. But it may take up to six months, so an early test may not be accurate. The disease is more infectious before the antibodies are formed. How is HIV/AIDS treated? The treatment of HIV and AIDS has improved greatly since the 1980s. When AIDS was first diagnosed, the average life span was from seven to 10 years after diagnosis. Today, the average life span has increased to 15 to 20 years. Medications, although expensive, can greatly improve a patient's quality of life. The first - and still most common - is the anti-viral medication Zidovudine Retrovir, commonly known as AZT. It can prolong a person's life but has such side effects as anemia, nausea, fatigue and headaches. Drugs can are also prescribed together in combinations called "cocktails." The combinations are more potent and effective in slowing the disease; they can also increase the risk of developing a resistance to the drugs. Dr. David Gilmour, who treats HIV and AIDS patients in the Rogue Valley, says treatment should go beyond medication. He recommends people who are HIV positive keep themselves as healthy as possible by taking vitamins, eating natural foods and exercising. Gilmour says if patients lead a healthy lifestyle, they'll boost their immune systems and be able to better fight the virus. Another alternative treatment is the use of marijuana, which can relieve the discomfort and pain associated with AIDS. It also gives patients an appetite, helping prevent starvation in the illness's late stages. The use and cultivation of marijuana is legal in Oregon if prescribed by a doctor as part of a medical marijuana law approved by voters in 1998. Isn't there a cure for AIDS? No. Although medications are more effective today, doctors warn that there is a misconception - especially among young people - that AIDS can be cured. The new drugs can delay death and improve the quality of life. They can suppress the virus, but it will never leave the body and can still be transmitted to other people. How can you protect yourself from being infected with HIV? Doctors say that, 20 years later, there is still no substitute for safe sex - sex in which no bodily fluids that could transmit AIDS are exchanged between partners. - Sarah Hanson and Jennifer Harper Sources: local interviews and resources provided by the Centers for Disease Control and Prevention and the Avert Organization. For more information, visit their Web sites at: www.cdc.gov and www.avert.org. Mail Tribune Home | Ottaway Newspapers, Inc. | Dow Jones & Co., Inc. | Privacy | Contact Us Copyright � 2001 Mail Tribune, Inc.