What the AIDS MOBILE has taught us – includes related article on Dr. William F. Andrews participation in the AIDS MOBILE project
WHAT THE AIDS MOBILE HAS TAUGHT US
It’s a sneaky virus that causes AIDS, but there was nothing sneaky about the people who lined up in Memphis this August to be tested for sings of the deadly infection. Little did we know that three of the persons who came through the line for counseling and testing would come back positive on the first screening (ELISA) test.
If we had known, perhaps there wouldn’t have been such a light-hearted, party atmosphere surrounding the AIDS MOBILE crowd.
We didn’t take pictures of the crowd, although TV-network cameras were everywhere. We had thought the appearance of our photographer might disperse the crowd, but the crowd didn’t care. The networks interviewed and no one ducked the cameras. In near 100|F. heat and in the hot afternoon sun, the line had formed as soon as the AIDS MOBILE arrived on the scene.
Young and old, black and white, gay and straight, they stood there defying all the propaganda and misinformation we had heard about the need for secret names and hiddenaway testing sites. They laughed and visited openly as though they were waiting in a reception line.
They also asked a lot of questions. Serious questions. Important questions such as “Should my six-year-old be tested? He had a blood transfusion last year.’ Dr. William “Chubby’ Andrews said yes, and the lad was tested.
Teen-agers looking too young to be sexually active or planning a pregnancy stood in line. Grandparents came with their adult children.
Dr. Andrews took to the AIDS MOBILE like a fish takes to water. We didn’t know he had been a medical missionary in Kenya at the African Inland Mission before becoming a prominent Memphis surgeon. Now the father of a noted Memphis surgeon and semiretired, Dr. Andrews had generously offered to supervise our testing unit’s medical team as staff phlebotomists and counselors administered free, confidential AIDS tests.
When it became crowded inside the air-conditioned AIDS MOBILE, it was Dr. Andrews who said, “No, we won’t set up screens to draw blood outside. Some oldster might pass out in the heat.’
We had been invited to Memphis by Ed McAteer, the president of The Religious Roundtable and the host of the “God and Country Rally,’ and we were met by Kemmons Wilson of Holiday Inn fame. Ed had already volunteered to be No. 1 in the blood-drawing line, and Kemmons, who had blood transfusions during openheart surgery several years ago, became No. 2 in the celebrity draw.
We had announced that the AIDS MOBILE would test all those who were planning a pregnancy and all those who had blood transfusions and their spouses. The Children’s Better Health Institute and The Saturday Evening Post Society, which support the AIDS MOBILE, targeted these two groups because the young parents subscribing to the children’s health magazines support us, and because we have many senior citizens in The Saturday Evening Post Society who have had blood transfusions during surgery.
Several young people were there because they had had transfusions. More than one young lady was there because she’d had a blood transfusion during a Caesarean section. “If I’m AIDS positive, should I be nursing my baby?’ one asked. “No,’ we told her.
The long line provided an excellent opportunity for those waiting to view our videotape of Dr. Jim Curran, the director of the AIDS program at the Centers for Disease Control. In a sincere, straightforward manner, he counsels the audience about why they should know if they are AIDS-antibody positive and what to do if they are.
With Dr. Curran’s expert advice on the screen, many questions were answered before the viewers reached the testing booths. Viewers pay attention because they sense he is an authority on AIDS.
The blood samples were centrifuged on board the AIDS MOBILE. The red cells are spun down to be autoclaved and incinerated; the serum is poured off the top of the tubes and refrigerated in labeled vials. The AIDS antibodies are remarkably stable in the serum, and the serum can be stored for several weeks if necessary before running the tests. Fortunately for us, the laboratory we use runs the ELISA tests every Tuesday and Thursday and may soon begin doing them daily.
The lab is approved for interstate commerce, and it uses the Mayo Clinic in Rochester, Minnesota, as its reference lab. All positive ELISA tests are sent to Mayo Clinic for the confirmatory Western blot tests.
When the 267 tests from Memphis came back, one of the three positive ELISA tests was that of a young mother who had blood transfusions during a recent C-section. Naturally, we can’t divulge her race, age, or any identifying information, and until her confirmatory Western blot results come back from Mayo Clinic, we can only hope that the initial ELISA screening test was a false positive.
We wondered if she was the one who asked about nursing her baby, and I thought to myself, Why doesn’t someone go to every state legislature to get an emergency law enacted to make AIDS tests standard operational procedure for all persons who have had blood transfusions? No matter how small the odds, the test should be done–not once, but twice during the time the antibodies might be coming up, perhaps three months after the patient’s discharge and again three months later. Because the test is relatively inexpensive (the chemicals in the kit cost us approximately $1.50), it would seem prudent to run the test twice after a blood transfusion, just to be on the safe side.
It’s been my observation that good doctors are so busy caring for the sick and hurting that they don’t have the luxury of time to plan cost-effective ways of going after the low-risk people. Nor should they be expected to shoulder the burden alone.
Industrialists I have known, such as Rich DeVos, Kemmons Wilson, Lee Iacocca, or my husband, would make quick work of getting the cost down on testing all the low-risk blood transfusion recipients once or twice and the high-risk people much more often, if necessary. So far, the crisis has been with the high-risk persons. Massive screening of the low-risk persons to find the estimated 12,000 people among us who have been infected from blood transfusions has been a lesser priority.
Pre- and post-test screening guidelines have been set up for the high-risk individuals–homosexuals and drug abusers–who must be counseled at great length to help them break entrenched habits that may cause them to be infected even after several years of negative tests.
The AIDS MOBILE has taught us that the little grandmother and widow who had transfusions and hasn’t had a bed partner since grandpa died ten years ago doesn’t need a counseling lecture and doesn’t need to see what to her would be pornographic literature when she gets her negative test results. Now we need to set up separate guidelines for the cost-effective testing with less counseling required for these important senior citizens. In the low-risk group, the odds for being positive aren’t great, but, as one victim said, “The odds may have been only .001 percent, but when it happens to you it’s 100 percent.’
For Paul Gann, from California, it was 100 percent. As we walked down the steps at the Capitol a few days ago, he stumbled on the stairs. Apologizing, he said that lately he couldn’t see off to the side. Doctors call this loss of peripheral vision “tunnel vision.’ His ophthalmologist may tell him whether it’s AIDS-related neurological damage. His self-sacrificing crusade is to use the last days of his life to help prevent others from getting AIDS. There is not an ounce of bitterness in this man. The son of a minister, he long ago learned the blessed art of forgiveness.
He’s an inspiration to all who would help curb the AIDS plague. So when Paul Gann called to ask if we could bring the AIDS MOBILE to Washington, how could we turn him down? Ours would be only a small hassle compared to his sacrifice. Our phlebotomist-counselors drove all night to arrive at the designated hour.
We have more than one reason to thank Paul Gann in his AIDS crusade. I probably would not have been appointed to the Presidential Commission on Human Immunosuppressive Virus Epidemic had it not been for testing Nell Gann in the AIDS MOBILE at CBN.
It all came about like this. When our new “LifeCare Digest’ producer, Christina Andrews Rylko of Seattle, heard that the AIDS MOBILE was going to CBN for an AIDS program, she said, “Why not invite Paul Gann to appear first to tell his story?’ Christina is a genius producer, and Paul’s appearance made the “700 Club’ program an unforgettable real-life drama.
The studio audience was invited to be tested. Nell Gann was in the audience. Pictures were taken for the Post, and the next Monday morning while listening to President Reagan speak in Indianapolis to the convention of the National Association of Counties, I penned a note on the back of the picture of Nell and Paul Gann in the AIDS MOBILE. Not everyone would have a chance to meet and be photographed with the President on his quick trip to Indianapolis, but because my husband, the president of our City/County Council, co-hosted this convention with our mayor, William H. Hudnut III, we were invited to meet with the President after the speech. When I handed the President the picture of his old friends Nell and Paul Gann in the AIDS MOBILE, he smiled. “Put it in your pocket,’ I instructed our Chief Executive. He smiled and did it! I was so excited that I ran off, forgetting to have the picture taken with the President and my husband. My husband just laughed and called me back to be in the picture with them.
Back on Air Force One that afternoon, the President must have taken out the picture with the note about how much I wanted to serve on his AIDS team. He took it to the White House that afternoon. I know, because the next morning a Federal Express letter from the White House arrived that said: “The President has encouraged the private sector’s involvement in providing assistance to those possibly affected by the disease. Your efforts to combat this dreadful disease and with the AIDS MOBILE are commendable.’
Fortunately for our Indianapolis AIDS team, this was the very day choices for the 13-member presidential AIDS commission were being finalized. As I was reading the good news in the letter, a call came from the White House asking for my Social Security number with more good news. The President was going to appoint me to the commission.
I know the President is a practical man who would like to know about the willingness of the public to be tested on a voluntary, free, and confidential basis. I had the Ganns, Christina Rylko, and especially my husband to thank for this chance to show the President the AIDS MOBILE in action.
Indiana has a marvelous opportunity to provide leadership in the AIDS battle because Dr. Woodrow Myers, Jr., the commissioner of the Indiana State Board of Health, who has already won national attention for his outstanding work in AIDS education in the state, was also chosen for the President’s commission. A Hoosier by birth, “Woody,’ as he is known, trained at Stanford University and Harvard Medical School. He spent time in San Francisco General Hospital, where he gained early experience in the care of AIDS victims. He won acclaim from none other than Surgeon General C. Everett Koop, who said in a recent address to the National Conference of State Legislatures, in speaking of the Indiana State Board of Health’s work in AIDS, “Indiana has a model program.’ Woody was creadited with the careful handling of the hemophiliac Ryan White’s case when the State Board of Health advised that Ryan should be permitted to attend public school in Kokomo if he chose.
In the last issue of the Post, we described the AIDS MOBILE testing that had its beginnings at the Dick Lugar Health Fair in Indianapolis. As we went to press, we had no results from the tests. Now we know that the tenth person who came in for testing was positive on the ELISA screening test, and we had his results sent to Mayo Clinic and to our State Board of Health, as well as to Methodist Hospital in Indianapolis, for confirmatory testing. Both came out positive. This test is believed to be more than 99 percent positive that the person has the AIDS virus.
The Rev. Peter Michael, Frank Esparza (the counselor who drew his blood), and I went to the home of this impoverished individual, who had told us he’d been given several transfusions at a local hospital several years ago. He was counseled at length as to what an AIDS-positive test means. He was provided free condoms because he had a girl friend, whom he agreed to let know about his positive test. We stopped at the church where he had been baptized many years earlier, and without divulging his health problem, we solicited the minister and a social worker to help with his drinking problem. His mother, who had recently dressed a bloody wound on her son without rubber gloves, was also tested.
We learned that this first victim to be identified on the AIDS MOBILE needed a great deal of follow-up medical attention. He is much more concerned about getting medical attention than he is about keeping his condition a secret from others.
Since the wheels of the AIDS MOBILE first began turning, the prevention and testing unit has logged hundreds of miles as it received invitations that came from far more cities than we can possibly visit. There should be one AIDS MOBILE in every city in the country.
In return for the testing, visitors to our lab on wheels are asked to complete an anonymous questionnaire (see centerfold) and pledge to donate blood if their doctor and the blood bank agree they are physically able to do so. “By making this patriotic pledge, as an AIDS-antibody negative person who has practiced AIDS preventive measures, I will be helping to keep the American blood supply clean,’ the pledge states.
The medical team on board the AIDS MOBILE is quick to make a pledge in return: all persons requesting the AIDS test are assured confidentiality. In fact, they are given several options–they can be notified of the test results via an anonymous minister, an anonymous doctor, their family doctor, their spouse, an anonymous counselor, or directly by mail. To the surprise of many, more than 93 percent preferred to have even the positive resuts sent directly to them by mail (see page 100).
Having grown up in a small town in Iowa, I wasn’t surprised about the results. Whenever you wanted to buy something and keep it a secret, you couldn’t do it at the local Rexall drug store. No way. You would order it from the Sears Roebuck catalog, and you’d get it back in a few days by RFD. I guess it isn’t just small-town people who feel that the U.S. mail can be trusted to keep a secret. Besides, it’s against the law for anyone to tamper with the U.S. mail.
“The stigma seems to have lessened,’ say phlebotomists Frank Esparza and Andy Burnett, who report that visitors to the unit comfortably discuss and ask questions about the AIDS virus. Public education has had an impact, and most people simply want to know.
“Any human being who loves any other human being ought to be AIDS-tested,’ Indiana Congressman Andy Jacobs, Jr., said. “It’s just that simple, because it could be a terrible epidemic.’
Rep. Jacobs attended a press conference at our AIDS MOBILE at the National Conference of State Legislatures. State senators and representatives had a lot of questions to ask about the results of the testing program, and many participated by being tested themselves.
Many asked to have more information mailed to them and left their cards. One state senator made arrangements for us to bring the AIDS MOBILE to Iowa for an upcoming regional meeting of the Council of State Governments.
Further interest was sparked when the AIDS MOBILE pulled up to Capitol Hill in Washington the morning AIDS victim Paul Gann met the press in the halls of Congress. Paul was the guest of California Congressman Bill Dannemeyer, an advocate of legislation to require that the persons carrying the AIDS virus be reportable to public-health authorities. Gann’s very personal statement about his condition was greeted soberly by members of the media.
“When my doctor told me that I had AIDS, I felt more anger and frustration than ever before that someone’s bad judgment sentenced me to death,’ he said. “You see, even though I’m 74 years old, and going on 75, I still treasure life as much as anyone, regardless of age.’
In spite of his illness, Gann, a well-known and feisty critic of government spending, has lost none of his spirit. “I’m here to start what may become the last campaign of my life,’ he told the Washington press corps. “I don’t know how much more time I have but I want to spend it doing everything I can to protect others from falling under this deadly spell.’
Gann publicly endorsed the mission of the AIDS MOBILE and urged reporters to visit the unit parked on the Capitol plaza. Several accepted his invitation.
As vital as education and testing are in the battle against AIDS, so does counseling play an important role. To address the counseling concern, The SatEvePost Society and the CBN have recently developed a significant cooperative effort. Because CBN has thousands of counselors in place nationwide, the Post has arranged a plan for telephone counselors to add the subject of AIDS to their topics of expertise.
They will be referring all AIDS-related medical questions to AIDS coordinators in each of the states or to the counseling and test sites in their areas.
This fortuitous arrangement was made possible by Deborah Taylor, the AIDS coordinator for the Division of Acquired Diseases at the Indiana State Board of Health.
Lest you wonder how Hoosiers know so much about AIDS, Deborah Taylor came to Indianapolis from San Francisco, where she worked for the San Francisco City Health Department as a disease-intervention specialist. Deborah told us things we had never heard before. For example, some “straight’ couples practice anal intercourse to avoid pregnancy. With what we know about sexually transmitted diseases, the rectum is not a safe place to deposit semen, because small tears in the lining of the rectum can permit any number of viruses to be introduced directly into the blood.
Deborah was present at the first meeting when the San Francisco staff discussed a strange phenomenon causing illness among young men between the ages of 20 and 40 in San Francisco, Los Angeles, and New York. At that time AIDS was referred to as GRID (Gay Related Immune Deficiency). Deborah worked with AIDS education programs in the San Francisco Bay Area until she came to Indianapolis, where she formed the AIDS activity office that she now coordinates for the Indiana State Board of Health. Under her direction, Indiana’s AIDS program was recognized as one of five outstanding innovative programs in the nation by the Council of State Governments. The CDC, having known of Deborah Taylor’s dedication to AIDS education for many years, was delighted to learn of her proposed method of using videotaped counseling instruction for church counselors across the nation. The plan, a brainchild of Bob Silvers, vice president of the SatEvePost Society, will call for a “live, by satellite’ training conference for hundreds of churches nationwide that have receiving dishes. Those churches, in turn, will be called on by the Society to counsel individuals in the area who have questions about AIDS, especially those who need to know more about the meaning of positive and negative antibody test results.
AIDS is a concern of all of us. Please turn to the questionnaire on page 55, fill it out, and return it to the Post. These questions were contributed by AIDS authorities at the CDC, by Congressmen Andy Jacobs and Bill Dannemeyer, by Deborah Taylor, and by the SatEvePost staff. It’s our research contribution. We will tabulate the answers and report them, not only to you, but to the CDC, congressmen and senators in Washington, state legislators, and county officials. This is your chance to help let the people speak out about how they want to see AIDS prevention handled. Information you relate may help prevent the spread of AIDS to your own neighborhood or household. If you know you don’t need to be tested, then please donate blood, if you’re able.
Table: MEMPHIS AIDS MOBILE QUESTIONNAIRES More than 93% of those tested in Memphis chose to be notified by mail.
Photo: Ed McAteer, the president of The Religious Roundtable, invited The Saturday Evening Post Society to bring the AIDS MOBILE to Memphis, Tennessee, for a “God and Country Rally’ at the Ridgeway High School Auditorium. Here, an enthusiastic crowd waited to take advantage of the free, confidential AIDS-test offer. To prove to others they had nothing to fear, Ed McAteer volunteered to be first in line.
Photo: The AIDS MOBILE enjoyed bipartisan support from congressmen as Democrat Andy Jacobs and Republican Bill Dannemeyer visited the site to learn how the public responds to voluntary testing offers. Visitors were shown counseling techniques, blood drawing, spinning of the blood in the centrifuge, and refrigeration of the serum.
Photo: Kemmons Wilson, the co-founder of Holiday Inns, battled Ed McAteer for “first blood’ and lost. He did manage to be the second person tested for AIDS at the celebrity draw. Impressed with the efficiency of the testing plan, Kemmons generously offered complimentary rooms in his new luxurious hotel, the Wilson World, for use by the visiting professional staff. The AIDS MOBILE spent the following day testing hotel guests, employees, and others.
Photo: In the halls of Congress, the Washington press became solemn and questions were respectful as Paul Gann, showing signs of his illness, described his commitment to prevent others from suffering his fate. He supports legislation proposed by Congressman Bill Dannemeyer (left). Questions about the AIDS MOBILE were taken, and the press were invited to inspect the testing facility outside on the plaza.
Photo: A picture like this one called President Reagan’s attention to the efforts of the AIDS MOBILE. The President knew Nell and Paul Gann in California.
Photo: Deborah Taylor, the AIDS coordinator for the Indiana State Board of Health, was recently videotaped by the Society during a three-hour training lesson for counselor supervisors. Society’s Bob Silvers will send out her AIDS counseling presentation by satellite to hundreds of churches with receiving dishes. Church members will learn how to help AIDS victims in their areas.
Photo: “Any human being who loves any other human being ought to be AIDS tested,’ said Indiana Congressman Andy Jacobs. He surprised the press by being tested on cemera.
Photo: When little Ryan White was still physically able to attend school, a battle raged in Kokomo as parents were concerned about the spread of AIDS. Dr. Woodrow “Woody’ Myers, Jr., the commissioner of the Indiana State Board of Health, is credited for having advised school officials that Ryan should be permitted to attend classes if he chose to do so. Ryan now struggles for life.
Photo: Surgeon General C. Everett Koop, M.D., recently paid tribute to Dr. Woody Myers by stating that “Indiana has a model AIDS program.’ Dr. Koop favors more voluntary testing and sex education.
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