State gains ground on epidemic

AIDS: 25 years later

By CZERNE M. REID

czreid@thestate.com

HIV/AIDS FACTS

All Jim wanted was to get into heaven. He’d been a faithful choir boy at his Charleston Catholic church. But he also was gay, which was forbidden. Still, he turned to his church in the mid-1980s when he found out he had AIDS.

His church turned him away.

Dr. Robert Ball pronounced Jim dead just hours before attending a Christmas concert at the young man’s church. As the choir started to sing “O Holy Night,” a rushing feeling came over the doctor.

Overwhelmed, he called the young man’s family to tell them what had happened. Jim’ mother burst into tears. “O Holy Night” was the one solo her son used to sing with the choir.

“Jim got into heaven that night,” Ball said, his voice cracking as he told the story more than 20 years later.

Twenty-five years ago, on June 5, 1981, the Centers for Disease Control and Prevention published the first report of the mysterious disease that came to be known as AIDS/HIV.

Ball is the S.C. physician credited with diagnosing the state’s first AIDS case, in June 1982, a year after the report.

Ball has been working with HIV/AIDS patients ever since. During that time, he said he has seen attitudes toward AIDS patients and services improve. But challenges linger.

“Behind every number is an infected person and an affected family,” Ball said. “Part of doing something about AIDS is knowing what AIDS is doing to us.”

Forging a decades-long partnership, Ball, epidemiologist Dr. Eric Brenner, then with DHEC’s Bureau of Disease Control, and Lynda Kettinger, director of the department’s STD/HIV division, have driven the state’s HIV/AIDS prevention and treatment efforts, starting with the establishment of a surveillance system, when little was known about the disease.

More than 13,000 in the state are living with AIDS, and 800 new cases are diagnosed each year.

Ball’s first AIDS patient, a young man about 20 years old, was suffering from a “fever of unknown origin,” weight loss, swollen lymph nodes and herpes simplex virus in his bloodstream. Mysteriously, he did not have signs of cancer or other illnesses that might be responsible for his symptoms.

“This was brand new,” Ball said.

But Ball had been keeping up with the medical literature, and surmised the young man had AIDS.

He consulted with the CDC and with Brenner about what to do. Tests at MUSC showed the patient had severe immunodeficiency and what was later identified as the HIV virus. Ball treated the patient intravenously with an antiviral agent known as acyclovir — still used today to treat herpes infections in patients with HIV.

The young man lived for 12 more years with full-blown AIDS. Before he died, he assisted in local health education and AIDS detection efforts. For an early HIV-testing system used nationally, the patient’s blood was the only positive laboratory control against which other people’s blood was compared.

After that first patient, Ball started a list of AIDS cases in South Carolina. The list grew to more than a dozen the first year.

“The more we looked for it, the more cases we found,” said Ball, now an infectious diseases consultant and epidemiologist with DHEC. “AIDS became a very challenging and demanding specialty requiring almost an all or none devotion.”

In 1983, the state’s public health leaders responded, adding AIDS to the list of diseases that doctors must report cases of to DHEC. In early 1985, after it became known people were getting AIDS from blood transfusions, recommendations were made that blood donation centers test blood for HIV.

That set Brenner’s mind to work.

“Our concern was that if that was the only way to be tested, some people might go to give blood just to know their status,” Brenner said.

So he led the effort to set up free, confidential testing in all 46 counties. That helped keep the blood supply safe while allowing people to know their HIV status.

In the intervening decades, the medical community has learned how to better serve patients with HIV/AIDS.

“The good news now is that when we test people in health departments, we now have a way to refer them to appropriate care,” Brenner said.

One of the great success stories in the state, said Ball, is the federally funded Ryan White CARE networks that provide health services and life-saving medicines to low-income people with HIV who have little or no insurance. The partnership between DHEC and private entities, including hospitals, clinics and community-based organizations, launched networks in four counties in 1992. Today, 11 networks serve the state.

Aggressive prevention efforts also have reduced the number of babies born with HIV in the state — there were only 2 reported cases in 2005. Under Kettinger, DHEC also has expanded testing services to include mobile units serving rural areas. A current push involves using community- and faith-based efforts to reach disproportionately affected groups such as African-Americans — who represent three of every four cases in South Carolina.

Although public understanding of HIV/AIDS has improved, stigmatization and discrimination remains. Some people are still shunned by their families and, like Ball’s patient Jim, by their churches. For these reasons, many people who live in rural or small communities often refuse to seek care because they fear that someone will recognize them.

Brenner is worried the public has tuned out the AIDS epidemic as other issues grab news headlines. Reduced attention can lead to less money for services. For example, fewer resources now are forcing cutbacks in the state’s CARE networks. For the first time since 2002, those networks have started putting patients on a waiting list this month, Kettinger said.

Reach Reid at (803) 771-8378.