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Emerging Trends for Managing AIDS in the Workplace

June 1, 1995
Is AIDS your business? You bet it is. If you have a work force of 300 people, chances are you have at least one employee who's HIV positive or who has AIDS. Counting those employees' dependents, spouses and significant others, AIDS is probably affecting two or three of your workers' lives, based on estimates by the Centers for Disease Control and Prevention (CDC) that put the number of people living with HIV infection and AIDS at one in every 250 Americans.

Given these statistics, American business people no longer can regard AIDS as a political and moral issue that's someone else's business, as we did during the 1980s. The past decade has taught us that AIDS is a workplace issue. It's a productivity issue, a management issue and a training issue.

Indeed, the CDC estimates that 90% of HIV-infected Americans are in the workplace. And, to the surprise of many business owners, a 1993 survey conducted by the National Leadership Coalition on AIDS found that "fifty percent of all working Americans consider AIDS their chief health concern."

With changes in the scope of the epidemic, in medical knowledge and in the legal environment, managing AIDS has become a critical business skill in the 1990s. Astute business leaders and HR professionals who understand these changes can better educate their work force, forestall legal challenges and costly management errors—and manage HIV-infected employees compassionately.

Training dispels fear and teaches managers proper treatment of AIDS cases.
As of 1995, the fifteenth year of the AIDS epidemic, there have been roughly half a million cases of AIDS in the United States. Although researchers have known for a decade that HIV is a bloodborne virus with very limited avenues of transmission, most Americans still haven't had formal, reliable AIDS education, and thus are likely to respond to HIV-infected co-workers with fear and misunderstanding of the workplace risk. Employers must know how to manage the fear and rumors about AIDS because they can have a devastating effect on productivity.

Productivity suffers when employees lose confidence that their work environment is safe. If they don't understand how HIV is transmitted, co-workers may refuse to use the same car pool, bathrooms, lunchroom, tools, drinking fountain or cubicle used by an HIV-infected co-worker. Fear erodes the carefully-nurtured teams managers work so hard to build. Anger erupts when misinformed co-workers learn that they don't have the right to know anyone else's medical diagnosis—they feel compromised by a law they don't understand. Co-workers are less willing to perform first aid on an injured employee when they don't know how to manage a bleeding injury safely.

It's up to employers to dispel workers' fears. In fact, the New York Business Group on Health conducted a study that yielded this surprising statistic: 75% of American adults view their employer as the most reliable source for unbiased, trustworthy HIV education. Yet the vast majority of employers haven't provided workplace AIDS education for their employees. Two employers—First Union National Bank and Teradyne Inc.—have put training programs in place and have been startled by the scope of the benefits.

"Until a year ago, I didn't think AIDS was a business problem," admits Ches Gwinn, senior vice president for compensation and benefits at Charlotte, North Carolina-based First Union National Bank, the nation's ninth-largest bank. "Then I looked at the numbers. After a few phone calls and a few minutes at the calculator, I knew we needed to respond with as many resources as we could."

Gwinn simply took the national estimate of infections—one in every 250 Americans—and applied that estimate to First Union National Bank's population of approximately 34,000 employees and their dependents. He also took into account that rates of HIV infection are rising most quickly among women and teenagers. According to CDC, from 1993 to 1994, new cases among women in the United States jumped 17%, and 75% of the bank's employees are women with an average age of 35.

"I figured we have 300-350 cases of HIV infection, most of which we don't know about, so we're sitting on a time bomb that's increasing exponentially," Gwinn says. Using the $120,000 estimate of the average medical cost of an AIDS case from infection to death calculated by the American Medical Association, and adding in employee replacement costs, Gwinn determined that the company would be spending $30 to $40 million over the next 10 years.

"This is why we're training our managers and supervisors across the country about transmission, prevention and handling AIDS cases," says Gwinn. "In terms of direct costs, the training program across twenty-plus subsidiaries in thirty states will cost less than one AIDS case," which Gwinn hopes the training on prevention will help prevent. He emphasizes, "I should have been fired if I hadn't done this." His advice to other employers who are wondering whether there's a management issue here? "Look at your demographics."

First Union National bank piloted its AIDS training program for managers in ten randomly-selected sites. Gwinn sat in on the seminars. "After every pilot session, at least one person approached me and thanked me, saying how grateful they were to the company, how much better prepared they felt. Others described losing a family member or co-worker. They felt guilty for not supporting the person as much as they could have. They said, 'Had I only been through this program before, look at the pain we could have avoided.' Having gone in from the perspective of the bottom-line person, I came away almost in tears, realizing the human impact of this."

Then the feedback forms came in. Ninety-six percent of all respondents said the training should be mandatory for all managers and supervisors. Well over 50% said the training should be mandatory for all employees. During 1995, all of the bank's approximately 3,000 managers and supervisors will be trained. "This is a wonderful culture, and this bank does things when they make sense for people. I haven't had a single roadblock anywhere," says Gwinn.

Teradyne, Inc., a Boston-based Fortune 500 company serving the computer industry, is providing to all 3,500 U.S.-based employees three-hour seminars that cover virus transmission, how HIV infection develops, universal precautions in first aid and supervisors' legal responsibilities. The company plans to take the training worldwide. Like the bank, this manufacturer of high-speed test equipment has multiple training demands. But when registered nurse Elizabeth Hentz joined the Boston location's Health Services in 1992 and proposed companywide training based on her concerns about employee-relations issues that could arise without it, senior management gave her the go-ahead. "Since then," Hentz reports, "we've had a couple of deaths and a couple of employee-relations issues, all handled much more gracefully than they would have been otherwise."

Jerry Cellner, personnel manager for a division of Teradyne based in Agoura Hills, California, reports that in 1992, when the division began workplace AIDS training, senior managers saw this as a managerial and a personal-development issue. Often, the first HIV-infected person a businessperson meets is an employee who discloses for business reasons. They knew there would be a case (they have since had a case), and they knew two things about their managers: Managers needed to know how to deal with an actual or suspected case of AIDS, and managers would be like anyone else in that they would act based on what they knew—but that knowledge could be "anywhere from 'right on' to the opposite end of the story." Cellner stresses that "when managers do what is right and don't really believe it, it comes across as hollow. The greatest benefit we saw was that they had a much better understanding; their managing wasn't going to be hollow.

"Managers were more confident, they had their personal questions answered," Cellner reports. "So we developed a pyramid scheme in the positive sense, knowing that by training employees we could affect so many people." Cellner believes that one of the most effective components of the training program is employees' contact with one of the co-instructors, a person who lives with HIV infection. "People were deeply affected. For many, this was the first time they had met a person they knew had HIV."

Emerging medical trends offer good news and challenges for workers with HIV and their employers.
What are the medical implications? First, the non-news: For a decade there has been no change in the information about HIV's routes of transmission. Humans acquire HIV infection by having unprotected sex with an infected partner; by sharing contaminated needles; by being born to an infected mother; or by receiving a contaminated blood product—activities that don't appear on anyone's job description.

Now the news: Several medical findings have a bearing on managing AIDS at work. First, researchers have determined that there are long-term non-progressors, people infected with HIV who may never develop AIDS. (Infectious disease specialists believe that such individuals emerge in every epidemic.) Approximately 6% to 9% of people infected with HIV for more than ten years are symptom-free, have normal cell counts and haven't taken anti-viral therapy, according to Dr. Mark Katz, Regional HIV/AIDS physician coordinator for Kaiser Permanente of Southern California, a program with more than 4,000 identified HIV-infected people in treatment. Long-term non-progressors show no signs of progressing to symptomatic infection and have a normal anticipated life span in the workplace. Their promising presence underscores a key point: learning that an employee is HIV-infected does not necessarily tell us anything about that person's longevity in the workplace.

Second, there's now at least one preventive medication for each of the "opportunistic infections," so named because they take the opportunity of a suppressed immune system to become life-threatening in people living with HIV infection. Among the AIDS-defining illnesses, only dementia, wasting syndrome and the AIDS-related cancers can't be prevented with these medications. An HIV-infected employee under competent medical management now can avoid for years the dangerous infections that shortened the lives of so many people with AIDS in the 1980s, and at far less cost than the person would incur for hospitalization for even one of those infections. This is a key reason for the increasing longevity of HIV-infected employees in the workplace. Such employees are likely to be solid contributors for years.

Increases in longevity of HIV-infected employees mean that even if somehow a cheap and universally available HIV-preventive vaccine appeared on the market tomorrow, we would still have ahead of us at least two decades more of working beside Americans who are already infected.

Co-workers' greatest fears, even when they understand HIV transmission, are of the other infections or conditions that affect people with HIV or AIDS. Yet with the exception of tuberculosis, none of the opportunistic infections are diseases that co-workers can catch from a colleague with AIDS. Most of us have already been exposed to the opportunistic infections; a healthy immune system keeps them under control. "And tuberculosis is rare as a concomitant of HIV," Katz explains. When there's anyone with TB in the workplace, the disease is much more threatening to the HIV-infected person than to anyone else. Therefore, because tuberculosis is increasing in the United States, "companies should step up their TB screening programs," he advises. Katz recommends consulting with the local health department about an appropriate schedule of screenings.

Third, the medical challenges that employees are likely to face are shifting. Liberated from the life-threatening opportunistic infections, employees with HIV do run a greater risk of developing AIDS Dementia Complex, the result of the direct assault of the virus on the brain. Typically, it affects job performance because the person no longer can remember important data for fulfilling the essential functions of the job (see "When AIDS Dementia Complex Strikes Your Employee").

Another medical challenge is the sheer complexity of medicating AIDS. In a study reported at the 1992 international AIDS conference, Dr. Paul Volberding of San Francisco General Hospital reported that people with AIDS take an average of 7.1 medications, all with unique administration schedules and side effects. Scheduling and coping with side effects can have an impact on the employee's ability to work on a task for sustained periods.

Finally, the focus of HIV/AIDS care is increasingly on outpatient services. Conditions that would have required hospitalization a few years ago may now require only daily infusions or more frequent doctor's appointments. The benefit to the employer is that there are minor interruptions in the employee's productivity rather than two-week hospitalizations. "An employee in this condition can be maintained for an extended period," Katz explains. "If Laura has AIDS and is going to the doctor three times a week, that doesn't mean Laura is about to succumb. More likely, it means she's getting good medical care."

Improvements in medical care postpone disability leave.
As increasing longevity in the workplace offers HIV-infected people more choices, the issue of disability leave has become more complex. With such improved quality of life even at low immune cell (T-cell) levels, employees with AIDS, working with their doctors and their human resources people, make individual decisions about the timing of their departure from the workplace. Based on their strength and the stress level of the job, some people with AIDS elect disability leave at 200 T-cells, the point where the CDC defines a person as having AIDS. Others, to whom their work-related identity is central to their lives, may want to continue working with as few as 30 T-cells.

Many researchers believe that before a vaccine or a cure is discovered, we will see HIV infection as a chronic, manageable condition. That vision has implications for the longevity of HIV-infected employees—and the importance of facing AIDS in the workplace.

"The "perplexing manifestations" of AIDS mean that every hour, every day, we have to be alert to doing things we were never trained to do."

Now that the Americans with Disabilities Act (ADA) covers employers of 15 people or more, most employers have some understanding of its application. Much of the media and for-profit workshop attention given to the ADA focuses on its more problematic applications, but the ADA is a precious tool in managing AIDS at work, according to B.J. Stiles, president of the National Leadership Coalition on AIDS, a Washington, D.C.-based not-for-profit organization dedicated to dealing with workplace HIV/AIDS issues.

Stiles speaks from the difficult place of managing a case of AIDS on his own staff at this writing. Both he and Patrick, his AIDS-affected employee, have acknowledged that the pervasive temptation in managing a case is the tendency to procrastinate when faced with the disease. Although Patrick's health demands daily judgment calls, Stiles knows that for the sake of the staff, he must make decisions based on whether Patrick is fulfilling the essential functions of the job. Because AIDS is an ADA-covered disability, Stiles has a guide and a context for his decisions; he treats Patrick as he'd treat anyone else with a disabling condition.

"Every case is different because of the unpredictable and perplexing manifestations of the disease," warns Stiles. He explains that in many ways AIDS isn't so different from other long-term diseases, but the "perplexing manifestations" mean that "every hour, every day, we have to be alert to [doing] things we were never trained to do." The information the manager needs is contained in the ADA: Patrick must be evaluated based on his job performance, not based on his disability.

But Stiles' heaviest reliance on the ADA is still ahead. "When the work gets done and only deadlines have to be adjusted, I let myself slip into the presumption that this could go on indefinitely. What Patrick and I should be doing is talking about "what if," creating resources for the inevitable, forging a commitment to hold each other to standards of productivity. The diagnosis itself should put all of us on red alert." Stiles insists that we all need access to people who will help us understand the disease and its clinical manifestations. For most employers, he explains, that means putting backup systems into place.

"Managing HIV requires aggressive monitoring and explicit analysis almost every day," Stiles says. "It requires a partnership among the manager, the employee, the health-care provider [a relationship often established with HR or employee health services] and other support people in the employee's life."

Stiles longs for a kind of buddy system among managers. He now sees the need for someone in his own life to say, "B.J., when are you going to develop the budget and recruit someone to do the work Patrick can't do?" He understands that Patrick needs a comparable buddy who can ask, "Have you thought about cutting back on work to reduce your stress?"

Despite the growing body of knowledge about HIV and AIDS, Stiles believes that emotion still drives more business decisions about AIDS-affected employees than objectivity does. He concludes, "The best employers I know are implementing about 50% of what is known. We are allowing compassion to overwhelm objective analysis."

Handle each AIDS case as it warrants.
What does managing a case of AIDS effectively in 1995 look like? Consider this worst case scenario. The Prudential Insurance Co.'s Western Home Office Personnel Manager Virginia Fleming, recently had an intensive course in objective analysis and balancing the needs of the infected employee with the needs of the department. Last year, Fleming was called in when a department's data-entry person began acting strangely.

During his eight years with the company, "Andy" had maintained perfect attendance, an excellent work performance record and a reputation as the one who could always untangle other employees' computer problems. Outgoing and naturally funny, Andy was well-liked by co-workers. Fleming had known for several years that Andy lived with HIV infection, and was grateful that his health seemed to be holding.

All that changed one day when Andy left his work station to use the restroom and couldn't find his desk on his return. The co-worker whose help he sought thought he was kidding, but later in the day, Andy got lost in the building. Several department employees and members of the security staff spent two hours looking for him. The next day, Andy got lost in the parking lot; half the security staff and most of his department members were out looking for him.

In six weeks, Andy's dementia had taken him from full productivity to inability to find his work station. When Fleming assessed the situation, she knew that Andy must go out on disability leave immediately, despite his protests that, to him, disability leave meant death.

Fleming, who has managed The Prudential's workplace HIV and AIDS education program for the Woodland Hills, California-based office since 1987, called in the company's consultant and scheduled a staff update on HIV, including dementia. She scheduled a small group discussion on the same day with Andy and those closest to him about the need for this transition in his life.

Now that Andy is out on disability leave (with counseling), and the affected department has returned to full productivity, Fleming acknowledges that Andy's case was a "crash course in balancing." No one who has ever managed a workplace case of AIDS will tell you it was easy, but as we move through this tragic epidemic, it has become clear that wise business leaders prepare themselves and their managers to rise to the challenge of managing AIDS compassionately and effectively. American business is learning to work with HIV infection.

Personnel Journal, June 1995, Vol. 74, No. 6, pp. 125-134.