By Kimberly Moore
For Weekly Surge

"No war on the face of the Earth is more destructive than the AIDS pandemic."
-Former Secretary of State and retired General Colin Powell

In the early part of 1981, IBM was putting the finishing touches on the world's first personal computer, Pac Man and Space Invaders led the way for a new generation of video games and MTV was introducing a new 24 hour video music network. Conservative Republican Ronald Reagan had, the previous November, defeated Democrat Jimmy Carter in the presidential election and on Jan. 20, 1981, Reagan took oath as the 40th President of the United States. Saddled with rising inflation and record high unemployment, the United States was only months away from the most serious recession since the Great Depression, and unbeknownst to most people at the time, a killer was in their midst.

It started slowly, claiming several hundred people that first year, affecting mostly young homosexual men and intravenous drug users. What started out being called a "gay cancer" was, by the mid-1980s, a pandemic that threatened men, women and children, inciting mass hysteria among doctors and health care workers and eliciting a frank and strongly worded "facts of life" letter from the Surgeon General of the United States. Though the number of new HIV cases has stabilized in this country during the last decade, recent reports from the Centers for Disease Control (CDC) in Atlanta asserts that the number of HIV/AIDS infections has been seriously underestimated. New technology allowing for more precise estimates reveal the number of new HIV cases is actually 40 percent higher than had been previously thought, translating to more than 56,000 new HIV infections. On Saturday, friends and families of those in our area affected by HIV/AIDS will take to the trails of Grand Park on the former Myrtle Beach Air Force Base for AIDS Walk 2008. The event serves as a primary fundraiser for Careteam, a local non-profit group working toward the goal of stopping the spread of HIV/AIDS through prevention, education, treatment and support.

The Beginning of a Pandemic

It was the spring of 1981 that doctors in New York City first reported seeing a small group of young, gay men who had acquired Karposis Sarcoma (KS) a rare form of cancer that tends to appear mostly in older people. That June, the CDC published a report detailing the occurrence of Pneumocystis carini pneumonia (PCP), a rare and terminal lung infection, in five gay men from Los Angeles. The CDC could give the public no identifiable cause or contagion for the spread of the infection among the men. The 1981 CDC report is sometimes referred to as the beginning of AIDS - more accurately; it was the beginning of the public's knowledge of the virus. "I remember when safe sex meant don't do it with someone from San Francisco or New York," says Patrick Evans, a long time gay rights activist and resident of the Grand Strand who clearly remembers those first days of a disease that would eventually claim many of his friends. "This was the first period in American history when gay men could be out in the open. It was such a liberating thing, that we could be open about whom we were and seek relationships with other men - so we did." There was a false sense of security that Myrtle Beach was immune, that the deadly virus was only found in big cities, not here at the beach. "We thought maybe it was from the bathhouses, or the clubs - we never thought it was from sex," says Evans.

By the beginning of 1982 there were a total of 452 reported cases of the mystery ailment in 23 different states. News of infection among hemophiliacs and recent Haitian immigrants began to come in and the CDC coined a new acronym: Acquired Immune Deficiency Syndrome, or AIDS.

By late 1982, the infection rate continued to climb as women and children with no risk factors began contracting the disease. As specialists scurried to keep up with developments in identifying the cause of the infections, the numbers of those affected doubled at an alarming rate. Myrtle Beach was not immune. "Around 1985, as soon as the testing came out here, I went to get tested. That was when I discovered I was HIV positive," says Evans. "I was told to get my affairs in order. It was basically a death sentence."

IN THE PUBLIC EYE

The general public reacted to the spreading virus with paranoia, as police began outfitting themselves with gloves and breathing masks, landlords began evicting people who were known to have the diagnosis and the Social Security Administration began interviewing by phone for public appointments rather than risk shaking hands with someone who was infected. "I remember a friend, on what would be his last trip to the hospital," says Evans. "He was very ill, and we had called an ambulance. When the ambulance came to his house, the paramedics stood outside, on his front lawn, in the pouring rain, while they suited up before coming in to get him - full head covering, protective suit, the whole nine yards. They looked like Martians or something. I don't know if he knew what was going on at that point, but it so disturbed me to see him carried out that way."

By the middle of the 1980s, the CDC identified the virus that caused AIDS, naming it Human Immunodeficiency Virus, or HIV. The death toll skyrocketed - more than 15,000 people had died of AIDS in the U.S. since 1981. "So many of us had been HIV positive for a long time without knowing it, that period of not being sick from it had passed," Evans explains.

1985 marked a pivotal year as public attitudes towards AIDS began changing with the media frenzy over a 13-year-old boy named Ryan White, a hemophiliac who had contracted the disease through tainted blood transfusions. Despite the assurances of doctors that White posed no risk to his fellow classmates or teachers, parents and teachers in the White family's small town of Kokomo, Indiana rallied against his attendance at school while the cameras of news stations caught the angry confrontations and broadcast them to the nation. White was expelled from school and became an unlikely poster child for the disease, leading the fight against discrimination of people with AIDS.

The arts and entertainment industry had been hit hard by the epidemic, and Rock Hudson became the first major public figure to announce that he was a homosexual with AIDS. Hudson was a rakishly good-looking matinee idol who had received an Oscar nomination for his work in the 1964 movie "Giant," and was doing guest appearances on the popular 1980s drama "Dynasty," when reports began circulating that he was ill, had lost tremendous amounts of weight and was becoming weak, forgetful and disoriented at times Hudson, by that point, was afflicted with AIDS in the advanced stages. He went public with the infection, and sought an experimental treatment at the Pasteur Institute in France, but by October of 1985, he had succumbed to the disease. After his death, Elizabeth Taylor, his long time friend and co-star of "Giant," became an outspoken advocate as well as the Founding International Chairman of the newly formed American Foundation for AIDS Research, donating considerable sums of time and money to the cause. By 1987, celebrities such as Madonna and Elton John began holding benefit concerts to raise money for research and medicines, and in San Francisco, a group called The Names Project had begun work on an AIDS quilt, in which family and friends could make a quilted square paying tribute to a loved ones lost to AIDS. Princess Diana was photographed shaking hands with AIDs patients in a hospital in England and her tremendous popularity shed light on the misconception that AIDS sufferers were untouchable. By the end of the decade, the first treatment for the virus, the drug Azidothymidine (ATZ) was approved by the FDA and was shown to be able to slow down the progression of HIV to AIDS. By the time the drug was introduced there were more than 47,000 AIDS cases in the U.S., and 71, 751 cases throughout the world.

Sex and Consequences

AIDS obliges people to think of sex as having, possibly, the direst consequences: suicide. Or murder.
- Susan Sontag-Writer, filmmaker and political activist

 

Throughout the '90s, the HIV infection rate in America began to stabilize somewhat with greater awareness of risk factors and safer sex practices. Each year brought more deaths, but more drugs were being introduced that both helped to boost the immune systems of sufferers as well as combat the virus. By the year 2000, the infection rates among homosexuals and drug users were in decline. At the same time, the rates among African-Americans and heterosexuals began to rise alarmingly. According to Johanna Haynes, Executive Director of Careteam, a growing sense of complacency in the general public and ignorance about the virus and the population affected has resulted in increased incidence and a changing demographic. "It breaks my heart that after 25 years, the AIDS infection rate is the same, it's who is infected that's changing," says Haynes. "Over half of our newly diagnosed infections are among heterosexuals." The latest estimate from the South Carolina Department of Health and Environmental Control, from December of 2006, lists 14,120 people living with HIV/AIDS in our state. Of that number, close to 2,000 reside within Horry, Georgetown, and Williamsburg Counties, known as Region 6. "These are not bad people doing bad things," warns Haynes. "If you are sexually active, you are at risk for AIDS, no matter who you are."

HIV/AIDS is spread by the transfer of blood, semen and vaginal secretions. It can also pass through a mother's milk to her nursing child. The blood or body fluid of an infected person must get into the bloodstream of another person for the virus to spread, as it cannot live for long outside the body, such as in the air or on surfaces. Chris Long, a Medical Case Manager for Careteam, says, "HIV is extremely preventable, and there are very specific things you have to do to contract the disease. "It can be spread through the contaminated needles of IV drug users, or through a tainted blood transfusion. By far the most common form of transmission is through sexual encounters, especially anal sex. The thin membrane of the anus is susceptible to tiny tears during the course of anal sex, speeding the transfer of blood and bodily fluids from one partner to the other. Vaginal sex puts a couple at risk, if there are cuts, tears or sores (which may be undetectable) on either person that would allow the virus to get into the bloodstream. Oral sex with an infected partner carries a risk as the virus can be spread through bleeding gums or sores in the mouth. Simply kissing an infected person does not put you at risk, unless both parties had excessive, running sores or wounds in the area. "There has to be an entry point for the virus to enter the bloodstream," says Long, noting that he and the other caseworkers at Careteam have considerable contact with people who are both HIV-positive as well as those suffering from full-blown AIDS. He says, "We have about 90 clients each, and are an obvious example that you cannot get it from casual contact." In fact, a person with HIV, due to their lowered immunity, has more to fear from casual contact with the public than the public has to fear from them.

Longs' advice to the general public in terms of protecting themselves from the virus? "Assume that everyone is HIV positive and act accordingly," he says. You can lower your risk of coming into contact with the virus by practicing safe sex - not engaging in promiscuous sex, assessing the risk factors in your partners and protecting yourself by using condoms. "Condoms need to be latex or polyurethane in order to protect against HIV, and any lubricant must be water based. Oil based lubricants can cause latex condoms to break," says Long. "Wearing two condoms at once doesn't work either, as the friction between the two can cause breakage." While oral sex is a lower risk activity, it is not 100 percent safe, and Careteam urges clients to use condoms during oral sex to help prevent transmission (Condoms come in a variety of flavors to offset that latex taste). In South Carolina as well as other states, state law requires that an HIV-infected person notify a potential partner of their status before engaging in sexual activity. Careteam advises that you ask to see the actual test results before taking someone at their word regarding HIV status. "Don't just trust anybody with your health," says Long. "Just because someone says they are HIV negative doesn't mean that they are."

Suzette Curry, Program Services Director for Careteam, says education about the virus is the first defense in fighting the spread of HIV. South Carolina ranks as the ninth leading state in the nation in terms of new cases per capita. "People are just not aware of the problem in South Carolina," says Curry. The South Carolina Council on HIV has already funded a number of churches to begin AIDS ministries and AIDS awareness, especially in rural and impoverished areas where ignorance of the virus is causing it to spread like wildfire. "There is still a huge, uneducated population out there," says Curry. "A lot of work needs to be done within the African American community to raise awareness of prevention and treatment." Haynes agrees. "Where are all the old, gay men? Many of them are dead," she laments. "The African American community is in the same position as the gay community was 20 years ago. " Haynes points out that just as the original epidemic of the 1980s spread beyond the gay community, this new rise in incidence among African Americans is unlikely to stay confined to one particular group. "We have to wake up and address the problem. This affects us all."

A Global Challenge

Can we watch one-quarter of some countries' people die? Can 27 million orphans be left to fend for themselves? We may not be able to solve the entire problem today, but let us not be discouraged from taking the steps necessary to begin the journey.
-118 Bishops of the Episcopal Church to President Bush and U.S. Congress, June 2001.

In our global society, HIV is the first truly international epidemic. The World Health Organization, the directing and coordinating authority for health matters with the United Nations, calls AIDS "the greatest health care challenge of our time." HIV/AIDS cases amongst intravenous drug users have been on the increase in Eastern Europe, and in Asia, where the epidemic has been more recent, inaccurate systems make it difficult to monitor the disease as increasing numbers of cases appear. In many countries, prevention activities lag as epidemics move beyond traditional at-risk groups. The UK has seen a recent surge of heterosexual cases, and the Caribbean Islands, in particular the Bahamas, have been among the worst affected lately as unprotected sex among heterosexuals results in more infections. Without a doubt, the most HIV/AIDS-ravaged region in the world is sub-Saharan Africa, where the disease has claimed more than 20 million lives, leaving more than 11 million children orphaned in its wake. More than 2 million children in Africa became infected with the virus themselves, either while their mothers were pregnant with them or through breastfeeding as infants. For low income and middle class countries, the AIDS epidemic has resulted in serious setbacks to national development, setbacks that have been mirrored in lower income communities across this country. Families end up homeless as a result of the loss of the main breadwinners due to infection, children are left to fend for themselves as parents and caretakers are incapacitated with the virus, and governments find themselves in a healthcare crunch as the need for medicine and healthcare services surpasses what is currently available.

Living with HIV

I hope that everyone will join with my doctors and all those worldwide in the fight against this terrible disease.
- Freddie Mercury, lead singer of rock group Queen, in a statement to the press on November 23, 1991, in which he revealed he had AIDS. Mercury died the next day of complication from pneumonia. He was 45.

With advancements in treatment options, people diagnosed with HIV can live long and pro ductive lives, but medical treatment by a primary care physician as well as an AIDS specialist is essential to managing and living with the disease. Without the proper medicines and care, the prognosis isn't good. "People don't die of HIV, they die because their immune systems have been destroyed by HIV," explains Haynes. She stresses the importance of getting tested, and seeking immediate treatment in the event of a positive result. Haynes insists it is vitally important for HIV positive people to take their drugs everyday, without interruption, regardless of side effects such as vomiting, diarrhea, muscle weakness, and loss of appetite, among others. Skipping meds and going for periods of time without taking them can cause the infection to become drug resistant. "The problem with HIV is it's a retrovirus, meaning it mutates and has the ability to become resistant to the medicines used to fight it," explains Haynes. Once you become resistant to certain drugs, if you would happen to pass HIV to someone else, they would be resistant to those drugs also. A patient is usually prescribed a combination of drugs, known as a drug cocktail, and the drugs currently being used to control HIV are expensive, costing $800-$2,000 a month. Careteam helps to provide medicine through the Pharmaceutical Drug Assistance Program/AIDS Drug Assistance Program, and it also provides emergency financial assistance on a limited basis for rent, mortgage and utility costs through Housing Opportunities for People with AIDS (HOPWA) program. Volunteer attorneys provide free legal resources and guidance in dealing with living wills and power of attorney, and support groups meet on an ongoing basis. Fundraisers such as the AIDS Walk and Dining with Friends, an event the group holds in the spring, help Careteam provide services that federal funds do not provide for. One such service is a recent partnership between Careteam and the local Rape Crisis Center. "Rape victims, both men and women, are at risk for HIV," says Haynes. "Many are treated and tested for HIV in the emergency room and walk out with prescriptions for medicines that they will never get filled, due to the high cost and a general lack of insurance." Careteam will work with rape victims to help pay for their HIV meds, as well as support them in those first difficult months when side effects are most severe.

In a statement to the media released July 29, the UNAIDS organization (UNAIDS.org) states, "Substantial increases in HIV prevention efforts are producing results, but not enough to turn back the epidemic." While an actual cure for the disease seems doubtful due to the changing nature of the virus, researchers have been working on an HIV/AIDS vaccine, though most experts agree the chances of it becoming available in our lifetime is slim. "It's a full time job to manage this virus," says Evans, displaying the handful of pills he takes every day without exception. "It takes a lot of work, a lot of energy, and a lot of money. There are the pills for HIV, and the pills to counteract the side effects of the HIV meds I take."

His prognosis for the future? "My doctor has told me that I should look for something else to die from," he says with typical good humor. Unfortunately, if his body builds a resistance to the medicines, he could find himself in a very dangerous situation. For now, he is healthy and symptom free. "Yes, I am a survivor. There are survivors. But it is not an easy life."

Careteam can be reached by calling 236-9000 or online at www.careteamsc.org.

 

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