Subject: Living With AIDS:  Thanks to New Drugs
Date: Published: 9/2/88 206 lines
Source:  Wall Street Journal.  Copyright Dow Jones & Co. Inc. 

    Living With AIDS:  
    Thanks to New Drugs,
    Patients Are Surviving
    And Working Longer
    ---
    They Are a Greater Presence
    In the Workplace Today;
    Employers Are Adapting
    ---
    The Costs of Chronic Illness
    ----  
    By Roger Ricklefs
    Staff Reporter of The Wall Street Journal

    Last year, Adrian Kellard lost 30 pounds, spent two weeks
 in a hospital -- and learned he has AIDS. 
    But since then, the 29-year-old sculptor hasn't laid eyes
 on a sickbed.  Relying on the drugs now used to treat AIDS, he
 continues his art work full time.  To supplement his income,
 he spends one day a week making salads in a restaurant.  He
 has enough energy left over to lift weights in a gym.
    "AIDS is very different from what I expected," says the
 husky New Yorker, who has regained the weight he lost.  "I
 don't even feel sick."
    As Mr. Kellard's experience suggests, many people with
 AIDS are living -- and staying active -- longer than once
 seemed possible.  For patients, that can mean hope of
 surviving long enough to see a cure.  For society, the
 improving prospects of AIDS patients mean living more closely
 with AIDS than ever before.  Quite often now, AIDS isn't the
 gaunt young man dying in a hospital.  It is the guy you work
 with sitting next to you at lunch.
    "We find very close to 100% (of employees with AIDS) now
 return to work after diagnosis," says Robert N. Beck, an
 executive vice president of Bank of America in San Francisco,
 a unit of BankAmerica Corp. Four or five years ago, only 20%
 or 30% ever saw their desks again, he says.
    While comprehensive national figures don't exist, it is
 clear that people are living longer with AIDS. 
    In San Francisco, one of the cities hit hardest by the
 disease, the median survival period after diagnosis has
 increased to 15 months from 10 months or so through 1985,
 says George Lemp, who heads the AIDS surveillance branch of
 the San Francisco Public Health Department.  As of last year,
 26% to 28% of the city's AIDS patients were surviving two
 years or more, up from just 14% in 1985.  A study of New York
 patients concluded that more than 15% would survive five
 years, and some already have lived longer than that.
    Many patients still die relatively quickly.  And some
 doctors speculate that earlier diagnosis in certain instances
 can make it seem that patients are living longer.  But
 physicians agree that the drug AZT, introduced as an AIDS
 treatment early last year and currently taken by 20,000
 patients throughout the world, is prolonging lives.  Other
 drugs are improving the treatment and prevention of specific
 ailments associated with AIDS, especially pneumocystis
 carinii pneumonia, or PCP, the biggest killer.  Among PCP
 patients in the New York study, the chances of surviving for
 one year after the onset of AIDS increased from 18.2% for
 those diagnosed in 1981 to 48.5% for those diagnosed in 1985.
    "When people were diagnosed two years ago, they prepared
 themselves for death," says Lewis Katoff, the director of
 client services at the Gay Men's Health Crisis in New York.
 "Now they are preparing to live with AIDS.  "
    At present, longer survival may simply postpone
 debilitation and terminal suffering.  But patients hope that
 medical advances will turn AIDS into a manageable disease
 like diabetes.  Their goal is to become chronically ill.
    Nick Pippin is one of the AIDS patients who are staying
 active years after diagnosis, and who feel that this is the
 most constructive time of their lives.  As a freckle-faced
 all-American-boy type, Mr. Pippin once earned as much as
 $60,000 a year acting in commercials for Stove Top Stuffing
 and Nathan's Famous hot dogs.  But three years ago, he fell
 ill.  And he says he was told he would die within 18 months.
    "I was frantically living with issues of death.  Then came
 anger and depression," he says.  "And after all this Sturm und
 Drang, you are left watching reruns of 'I Love Lucy.' You
 wonder, what do I do now?  "
    Mr. Pippin's answer was to start an acting group, the
 People With AIDS Theater Workshop, whose members all have
 AIDS. When Mr. Pippin was hospitalized at New York University
 Medical Center, he found space in the hospital to continue
 rehearsals.  With a blend of serious and sardonic skits, the
 group aims to show audiences what AIDS is like in daily life.
 The company has performed in schools, churches and a New York
 cabaret.
    The 33-year-old Mr. Pippin must struggle with his
 company's financial needs and his own AIDS-related
 conditions:  chronic bronchitis, anemia, arthritis so severe
 that he needs a wheelchair, and a loss of peripheral vision
 that may lead to blindness.  But, he says, "This project has
 kept me going.  My life is worthwhile because of it."
    The treatments that have made it possible for Mr. Pippin
 to live and work and look forward to the future are having
 their effects on U. S. employers, too.  Besides keeping
 patients in the work force longer, they are lowering the
 medical costs of AIDS -- at least for the time being.  Three
 years ago, studies of early patients estimated the medical
 cost of an AIDS case (from diagnosis to death) could run as
 high as $147,000.  But in a new government study, costs have
 declined to about $57,000.
    Shorter hospital stays, better medicines and the
 aggressive use of home care all have reduced the bill for
 some employers even more, especially in the West.  Bank of
 America says its lifetime medical costs per AIDS case plunged
 to $17,000 in 1986 from twice that figure the previous year.
    But improved treatments are also dealing a financial wild
 card.  Given the widespread use of AZT since early last year,
 Bank of America's per-case figure rose for 1987 to $25,000.
 (The drug currently costs a patient about $8,000 a year.)  
 With new drugs and treatments available to stave off death,
 patients eventually may live for many years -- at what dollar
 cost nobody can estimate.  "We expect costs to continue to
 rise," says Bank of America's Mr. Beck.  "This is one of those
 uncontrollable things."
    As AIDS patients live longer, they are more in evidence in
 the workplace.  Nathaniel H. Pier, a New York physician, says
 60% to 70% of his AIDS patients are still at work a year
 after diagnosis, compared with 20% two years ago.
    Even more AIDS patients are on the job than their
 co-workers imagine.  Unsure of how his colleagues would react,
 a broker at a large New York securities firm says he has kept
 his illness a secret from colleagues for a year and a half.  A
 New York marketing consultant says he sometimes discloses his
 illness to clients he knows well -- but only after he sounds
 them out.
    Some patients, such as a New York salesman, are driven to
 keep working.  "In the examination room, he was one big
 Kaposi's Sarcoma lesion," says the salesman's doctor, Peter
 A. Seitzman, referring to the purple skin lesions formed by
 the AIDS-related skin cancer.  "He had his whole face covered
 with makeup (to cover the lesions), and he had lost a lot of
 his hair."  Yet the salesman continued working until three
 days before he died, Dr. Seitzman says.
    Leon Washington, a New York chef, adds:  "If I hadn't gone
 back to work, I wouldn't be (alive) today."  Diagnosed two
 years ago, Mr. Washington says he spent three months in a
 hospital and stayed off the job a year.  "I felt I had become
 a burden to my friends.  I would go a whole week without
 talking to anybody," he says.  "I thought about death
 constantly.  A lot of times, I was afraid to go to sleep for
 fear I wouldn't wake up."
    But with AZT and other drugs, Mr. Washington says he
 gained strength and "got bored staying at home."  Besides his
 full-time job supervising a meal program for AIDS patients,
 he now does volunteer work for the AIDS programs of two
 churches; he swims and rides horses.  "The harder you fight,
 the better your chances," he contends.
    Many who have to quit full-time jobs still try to keep
 their hand in.  A year after he contracted AIDS in 1985,
 physician Barry Gingell gave up his medical practice for lack
 of energy.  But now Dr. Gingell works as part-time director of
 medical information for the Gay Men's Health Crisis, editing
 a medical-treatment newsletter.  (The association has several
 AIDS patients on its staff of nearly 100.)  So as not to
 dissipate his energy commuting, Dr. Gingell often works at
 home on his computer.  "Those who keep working seem to do
 better," he says.
    Having observed the therapeutic value of work in treating
 AIDS, two New York University Medical Center physicians
 recently founded an organization, Multitasking Systems Inc.,
 which plans to employ AIDS patients to perform office copying
 and desktop publishing services.
    Workers with AIDS still must deal with widespread
 discrimination and fearful colleagues.  At a wholesale flower
 business in New York, a florist who had contracted AIDS
 suddenly found his workbench moved to the end of the room,
 away from his coworkers.  After enduring that indignity for
 several days, the florist lost his temper and smashed a
 flowerpot against the wall, says Leon J. Warshaw, the
 executive director of the New York Business Group on Health,
 the company's health services director.  Like Bank of America
 and many other companies, Morgan Guaranty, a unit of J. P. 
 Morgan & Co., also restructures jobs and working hours to
 help employees with AIDS continue to work as long as they
 feel able to.
    Levi Strauss & Co., in San Francisco, often provides
 individual and group counseling to help employees deal with
 coworkers returning from the hospital with AIDS.  "People
 wonder what to say and what to do," says Yvonne
 Ellison-Sandler, the clothing maker's director of employee
 assistance.  "AIDS raises all kinds of issues about one's own
 death," she adds.
    Employers say anxiety about working with AIDS patients has
 diminished, particularly where workers have had direct
 experience with the disease.  Jacqueline Taeschler is an
 associate manager of the department of the Metropolitan
 Museum of Art that reproduces artworks for sale.  She says
 that none of her staff members "expressed any anxiety about
 contagion" when David A. Baughman, a highly regarded master
 craftsman who has AIDS, wanted to stay on the job.
    "We are in New York, and practically everyone knows
 someone with AIDS now," Ms. Taeschler says.  Mr. Baughman says
 the museum's eagerness to keep him on the job sharply
 improved his morale -- and probably his health.  In a year he
 has missed less than two weeks' work.

[This article is made available here by Dow Jones Co. for the 
personal and non-commercial use of callers to this bbs, in the 
hope that it will be of some help to those who are suffering 
from the disease and others who are seeking to help them.]