The AIDS hospice houses came into existence because of three aspects of the disease. One, AIDS is a long-term, debilitating illness which is considered fatal. Two, extraordinary precautions need to be taken in handling the patient’s blood and other body fluids. And three, AIDS is feared in our society. If we were dealing with only the first aspect (that AIDS is a long-term, debilitating illness), many PWA’s could stay home with their families or other loved ones unless or until the person’s condition worsened, making his or her care too difficult or too complicated to manage. However, the other two aspects listed often eliminate the possibility of PWA’s staying home. While some families and friends do not have the emotional or the physical ability to care for a loved one who has AIDS, many families and friends, being uninformed, are afraid of this disease. They are afraid of their lives being disrupted, of friends and relatives avoiding them, of “catching” AIDS or of being considered exposed to it, and of the disapproving and glaring looks from neighbors. In suggesting that “many” PWA’s are cast away by families and friends, I must make it clear that the majority are not — not anymore.
My sense, which is a projection based only on what I have experienced, is that in the early to mid-1980’s, as many as one-third of PWA’s were shunned by friends, roommates, and significant loved ones. As we go into the 1990’s, that just is not the case anymore. The terrifying fear of “catching” AIDS has been extinguished by the continual dissemination of factual information. The repeated witnessing of so much suffering and death among friends in the gay community has called forth the deepest feelings of compassion.
As our society, in general, becomes more educated by health authorities about the spread of this disease, the rejection of people with AIDS by straights is lessened too. However, as the number of AIDS cases continues to increase, so will the efforts to promote AIDS hysteria by certain anti-gay groups, largely the right-wing “Christian” fundamentalists. These dastardly people inflate themselves as puffer fish do, to appear more massive and more powerful than they actually are. They form the foundation of the anti-gay movement, a foundation of mostly hot air. They have, however, had some “success” in blocking AIDS funding, especially in the 1980’s, and in keeping AIDS out of the established medical care facilities. As AIDS continues to explode into a catastrophic epidemic, it seems to be pulling people into one camp or the other. We are seeing reactions ranging from newly found hatred to newly found compassion. Compassion is winning, but it is a bitter struggle.
The World Health Organization (WHO) disclosed that there were 132,071 new AIDS cases reported in 1991, bringing the official total to 446,681 cases worldwide. Associated Press, covering the Geneva-based health agency, reported in January 1992. Because of under-diagnosis and delays in reporting, the true worldwide total of PWA’s is estimated at close to 1.5 million. This includes 500,000 children. WHO estimates that some 10 million people have been infected with HIV and that this will rise to as much as 40 million by century’s end.
In the United States alone, we have reported 218,301 cases of AIDS between 1981 and the close of 1991. More than half (141,223) of these people have died. The National Health Service projects that by end of 1993, over 365,000 Americans will have been diagnosed with AIDS and that 263,000 of those will have died. (These figures do not include those who are “only” HIV-positive, which may approach two million by 1994.)
You might wonder why PWA’s don’t utilize our existing network of private and public convalescent hospitals and similar facilities. While some health insurance companies still try to refuse to pay for medical costs attributed to AIDS, many are now being required by court rulings and governmental protection agencies to honor their policyholders’ claims. This is also why some health insurance companies began writing policies in the mid-1980’s that specifically excluded coverage of AIDS-related illnesses and require an AIDS blood test prior to approving the policy, a practice that has continued until today.
As reported in the Advocate, August 27, 1991, the largest health maintenance organization (HMO) in Massachusetts is being sued for AIDS-discrimination:
The lawsuit alleged that HCHP [Harvard Community Health Plan] underwriters illegally terminated the membership of Adam Rosenthal, the plaintiff, six weeks after they learned Rosenthal was HIV-positive. Rosenthal had belonged to HCHP, the nation’s seventh largest HMO since 1988. Rosenthal Charged HCHP with violating state laws that forbid AIDS-based discrimination and protect the confidentiality of HIV test results. He also accused HCHP of breach of contract and negligence for failing to treat his HIV infection while he was on HCHP member.
When PWA’s are covered for HIV infection, their insurance often covers a portion of convalescent hospital costs. So why not use them? Most convalescent hospitals will not accept PWA’s. The stigma attached to AIDS leads them to refuse to provide the urgently needed care. They do not want to provide the costly care needed in attending to PWA’s safely, nor are they willing to have the presence of PWA’s scare off present and future clients.
Prior to 1987, some PWA’s were forced to live in their cars, in flophouse rooms (if they had money to pay for them), on the streets, in parks, or in other unhealthy environments. There they lived until they became sick enough to be hospitalized or until they died. In the mid-1980’s some REAL Christians and humanitarians began to answer the challenge to house and care for PWA’s by establishing hospice houses. Since the people with AIDS in the United States were almost all male homosexuals, the compassionates who instituted these housing facilities, as well as those who supported them in numerous ways, were mostly members of the gay community.
While there are and always will be professional and caring members of straight society who provide comfort and support for PWA’s, it is largely the gay community that carries the burden of directly and indirectly providing essential health care services. It is the gay community that organizes fundraising events primarily participated in by its own members. It is the gay community that has established, or has caused to be established, various organizations that collect food for PWA’s, that compile and disseminate most of the accurate information concerning all aspects of the disease, including AIDS prevention education, that provide emotional support group activities for PWA’s and their loved ones, that maintains a system of trained volunteers such as “buddies,” hospital visitors, or those who help with housework or transportation, that provide legal assistance, that encourage and administer the AIDS antibody blood test, that lobby legislators at all levels of government to provide desperately needed programs and money to take care of those with AIDS, that continually plead with private and public agencies for much more research to produce needed time-buying drugs, develop a vaccine, and, of course, the cure for AIDS.
So, amidst all this increasingly coordinated and impressive effort, the AIDS hospice house is born as an interim, urgent measure to meet a unique housing need. Typically, they are a three to four bedroom California bungalow, circa 1930. Most are located in lower to lower-middle income residential neighborhoods because they are more affordable and very near a medical facility known to be not only accepting of PWA’s but also more knowledgeable about the disease. This is in anticipation of the need for frequent emergency care. The ten or so houses in the Long Beach area have a comparable character and atmosphere. Though one may be nicer than another, most residences are similar in architectural and interior design, furnishings, number of residents, level of care provided, amount of financial assistance available, cost to the resident, severity and types of illness of the residents, difficulty in maintaining volunteers, and the level of training of staff and volunteers.
Most of the hospice house operators in the Southern California area provide a casual, friendly, and positive psychological environment for their residents. There are a few important exceptions, however, which are those operators who subscribe to the fundamentalists’ “change-ministry” approach. These operators have a hidden or sometimes overt agenda to persuade gay PWA’s to give up their sexual orientation. They pile guilt, rejection, frustration, and emotional trauma on these most vulnerable and terminally ill people.
In 1987, I think, only two hospices were official nonprofit operations. Now all the hospice operators that I know about are established nonprofit corporations and are governed by a board of directors. From time to time, operators will try to expand their number of facilities to more than the usual one or two houses, but too many houses are usually too difficult to manage. Two or three houses seems to be the maximum one operator can handle, especially when they are located in different cities.
The larger operations (meaning those that are better organized, staffed and funded) may include paid positions for a house manager, a cook, and a housekeeper. The smaller operations usually pay a cook, but that may be all. Other routine chores are done by volunteers or by the PWA residents who are able to do them. Other professionals are utilized (and usually paid) on an as-needed basis. These would include maintenance workers to make repairs to the house, and of course, RN’s (registered nurses) who are licensed by law to administer prescribed intravenous drugs. It is not unusual for each house (of either the larger or smaller operations) to have one or more RN’s dropping by weekly, on a voluntary basis, to have a friendly visit with the PWA’s (we all seem to build emotional attachments to these people) and to be supportive of the hospice in general.
How is the cost of renting and operating the hospice house paid for? Residents pay a monthly fee if they have a source of income or money in the bank or other assets that they may sell. In most cases, at least those in California, PWA’s receive money under state disability and Social Security programs which total about $650 per month. They are required to give most, or all, of this amount over to hospice house. Almost all the house operators will take a patient in even though he or she does not have any monthly income. The operators know that these AIDS patients will qualify, and even though it may take two or three months to get connected with the public assistance programs, they will be paid retroactively and that money reimburses the house operator.
Grant funds have become available recently. The county and state provide some funds to hospice house operators simply because of the fact that if these facilities did not survive, the state and or county would have to provide some basic level of care and housing anyway. It is most definitely less costly to help keep the hospice house operators providing this care than to fill up the county hospitals with PWA’s. Therefore there is a combination of funds provided by counties and states, by the residents themselves, and by donations.
Some hospice houses may charge a PWA $1,200 a month or more, and some members of the gay community many feel that that is exorbitant because most PWA’s simple can’t afford to pay that amount. However, the typical hospice house operator in not simply providing a place to stay. Though some limited food items are supplied free by the food bank which is operated by Christ Chapel, a gay-oriented church, the balance of food needed is supplied by the operator. In addition, the operator often supplies other items like furniture and clothing if necessary. And last, but obviously not least, the operator has to see that his residents have access to prescribed and emergency medical treatment. This does not mean that the operator provides the medical treatment himself, but certainly, he has to be sure that the PWA gets to the hospital when necessary or that medical personnel is called to visit the house when they are needed.
Volunteers are unquestionably the backbone and substance of all supportive AIDS programs. Once again, gays and lesbians have taken the initiative, easily accounting for 80 to 90 percent of all volunteer work. This is not to diminish the invaluable contribution made by special members of the straight community who have labored vigorously and lovingly to assist in this crisis. It is simply to reiterate that it is the gay community that has energized itself to do battle with AIDS. The humanitarian efforts by society at large to ameliorate the desperate conditions of most PWA’s is clearly insufficient, but they are improving. I cannot refrain from acknowledging C. Everett Koop, M.D., who, as Surgeon General of the United States, led a tremendous effort to help educate society about AIDS and how it is and is not spread.
I cannot help but wonder how much of society’s hesitation to commit to the monumental research necessary to conquer AIDS is by design. Here we are, more than ten years into the most devastating epidemic in modern history, which by the end 1992 may kill more than a quarter of a million people in this country alone, and much of society is still debating IF “something” should be done. Up until Los Angeles Lakers star Magic Johnson announced that he had he contracted the AIDS virus (November 1991), concerted national efforts to eradicate AIDS are continually being thwarted by anti-gay groups with their “moralistic” mentality. “After all, AIDS is only attacking the expendables: homosexuals, drug Abusers, and poor minorities! Certainly, a vaccine and cure can be delayed until these undesirables are pretty much eliminated. AIDS is God’s handiwork, isn’t it?” Is it? Is cancer God’s handwork too? Is everyone who has cancer being punished by God? Is Chicken Pox God’s punishment for children? Of course not! And neither is any other disease, including AIDS.
Thus it is the gay community, caring for its own and the increasing number of straights being infected, that volunteers countless hours at the hospice houses and related programs. The volunteers’ tasks include such jobs as transporting PWA’s to doctor appointments, taking them out to a park or to a movie, cleaning up a PWA’s eliminated body waste (which requires special training concerning precautions), changing beds, doing laundry, picking up free food at the food banks and buying whatever other items may be needed, doing minor repairs or maintenance work to the house, being a friend to the residents and trying to provide some emotional and psychological support.
In the smaller operations where there is little or no paid staff, the volunteers also help with the cooking, cleaning, yard work, and so forth. The major problem with volunteers is that there is a high rate of turnover. This is due to the emotional strain these helpers go through in working with PWA’s. Volunteers cannot avoid witnessing the gradual deteriorating effects of AIDS in people they have cared for. Typically a house of 6 residents would have one death every month or so. Since most of the house operators in the Long Beach area happen to be Roman Catholics (though only one hospice was established in Long Beach which is supported by the Church), services often include a Mass at the house, unless otherwise requested by the deceased’s family or dear friend. Staff, volunteers, and residents are invited to attend. It is an extremely difficult, regular vision for the human heart. Just to provide the proper level of care to a bedridden PWA so taxes the volunteer that his or her participation is not measured in years, but in tears, frequently lasting a few months if not only a few weeks. For this reason, house operations may go through periods when volunteers are scarce and the operator himself, or herself, may be stuck with the nearly impossible task of keeping the house open. All AIDS hospice houses, even the few that are the best organized have a constant need for volunteers.
In the Long Beach area at different times, several organizations have trained volunteers to be buddies and hospital visitors. Project AHEAD, St. Mary’s Hospital and the AIDS Network have all conducted semi-annual training programs; but they have not trained volunteers for the hospice houses.
I propose establishing a group called PATH, Program for AIDS Training for Hospices. It could have the capability to provide better-trained personnel and a system of deployment that would prevent burnout. PATH would have three functions: first, to recruit people from all segments of society (not just from the gay community) to volunteer at the houses and for other similar programs; second, to train them to care safely for persons with AIDS as well as to do a variety of household chores; and three, to schedule them to work at a house for two months and then be off for one month. The amount a time that they work should be limited to about eight hours per week. It would also be helpful to rotate these volunteers to a different house for each two-month shift. Those who know hospice operators are aware that they can be stubbornly independent and avoid a cooperative working relationship with each other. (This is less of a problem now than it was in the 1980’s.) However, their survival depends on a volunteer workforce, and to obtain an organized flow of well-trained (or more realistically, at least BETTER trained) volunteers, they would succumb to a minimal level of coercive cooperation.
The hospices experience a dramatic and constant change of residents. This is due to two factors: first, the mortality rate of the residents is very high; and second, many PWA’s move out for a variety of reasons. Residents who use drugs steal from each other or from the house or who are generally disruptive are told to leave. They are on their own. These evictions are necessary and are becoming more frequent as the AIDS virus infection spreads into the IV drug abusing element of society. IV drug abusers who have AIDS are less educated, less stable, less cooperative, and in general, less manageable than those infected in the mainstream gay community. As AIDS becomes more controlled in the gay community and more prominent with IV drug abusers and other more mainstream segments of the heterosexual community such as sexually experimental college students and women of childbearing age, it will be interesting to see if the gay community continues to be the main providers of lifeline assistance.
What may seem to be an odd reason for a PWA wanting to be transferred from one hospice to another is the feeling that he is not respected as a gay person. “Odd,” because it is natural to assume that all AIDS hospice house operators work well with the gay community, that they appreciate the tremendous help and support provided by gays and lesbians, and that they fully respect the individual psychological makeup of their gay clients. However, starting about 1985, some religious fanatics became interested in “caring” for AIDS “victims” in order to have the opportunity to try to convert these vulnerable “homosexuals” to heterosexuality. Jim Johnson was one hospice operator who was (and still is) of that fanatical bent. He is a self-“admitted” “homosexual” who has such a poor self-image due to his expressed feelings of guilt concerning his homosexual orientation. As a former Baptist who became an extremist Catholic, he declared himself, as a homosexual, to be immoral and unacceptable to God, society and himself. I believe he began to work with PWA’s as a sort of penance or self-flagellation. He attempted to make up for his sins by preying on gay men who had AIDS.
Initially, he was generally well-respected and financially supported by the gay community because it believed that he was a proud member of it. However, about a year after he opened his two hospice houses, rumors surfaced that suggested Jim Johnson not only belonged to several anti-gay organizations, such as Homosexuals Anonymous and change ministry groups but also that he actually helped run them. How could someone who is so rejecting of homosexuality in general, be supportive of homosexuals who have AIDS? Where there’s smoke, there’s fire. I began asking questions of everyone who ever had contact with Jim Johnson’s operation including, visitors, PWA’s who were former residents, social workers, and health care professionals who provided services at his hospices, a couple of priest friends of mine who used to visit PWA’s there (but were later barred), and others. The more that others and I probed to find out what was going on in his hospices, the more secretive Jim Johnson became. He soon prevented certain people (even some who had friends living there) from visiting those PWA’s. A PWA named David, whom I visited at St. Mary’s lived at Jim Johnson’s place and told me that he wanted to talk to a priest. I mentioned Fr. John because I knew he would treat him with respect and compassion, and David asked me to have Fr. John visit him at the hospice as soon as David was released from St. Mary’s. When Fr. John tried to visit David as had been arranged, Jim Johnson would not allow it. Even after Fr. John explained that David requested his visit, Jim Johnson would not allow it.
When several PWA’s learned that I was “investigating” these houses, they sought to meet with me. But, since Jim Johnson at this point, barred me from entering his houses and the PWA’s from talking to “outsiders,” we had to arrange a clandestine meeting. I had to promise them that if Jim Johnson found out and got angry enough to evicted them, I would, that day, find them a place to stay. It was a promise I was prepared to keep to the fullest extent of my energy. So, at the exact predetermined time, I drove to the predetermined spot in the alley behind the hospice house. I honked twice, very quickly. Right on cue, three young men sneaked out the back door and hurried across a small parking lot toward my car. I could tell that one of them was not very well. They hopped into my little Datson, and I sped off to a grocery store parking lot about two blocks away. There we sat and talked. Many of the rumors I had heard were then confirmed. I asked them to go to the health department or a Press-Telegram reporter who was involved in an investigative story on Jim Johnson, but they were afraid of retribution. Even if they moved out, these men felt that Jim Johnson would find them and hurt them in some way.
From the information I got from these three witnesses as well as that which I pieced together from other PWA’s, visitors, officials, and professionals, all of whom were involved with Jim Johnson at one time or another, I composed a list of about 30 charges. I took my information to the health department, the police department, and the state attorney general’s office. I receive no immediate response, except the words, “We’ll check into this.”
The more questions I asked, the more suspicious, paranoid, and erratic Jim Johnson’s behavior grew. This encouraged more people to come forward, and the gay community finally began to understand that Jim Johnson was not a saint, but one twisted man who had no business “helping” AIDS patients. I discovered that he went so far in his rejection of homosexuality that he conducted weekly “conversion meetings” for persons with AIDS in a downtown Los Angeles Catholic church, preaching about the sins of homosexuality and how people could be straight if they tried hard enough. The Archbishop of Los Angeles halted Jim Johnson’s meetings after several complaints were received from PWA’s who felt insulted by the Jim Johnson’s judgmental attacks on them. Jim Johnson was so strongly promoting his “change ministry” that the gay community became increasingly angered over the possibility that “deathbed conversion” may be taking place at his Long Beach houses. While some PWA’s seemed unaffected by Jim Johnson’s dual and contradictory attitudes, other PWA’s living with him began to ask to be transferred to any other hospice house.
Since officials were not taking immediate action, I through that I had to. I mean, this evil I uncovered was staring me in the face! It could help inform both the general gay community and the AIDS health care providers around the country of Jim Johnson’s sick, anti-gay attitudes and activities. I wanted to stop hospitals, the numerous AIDS programs, and Catholic parishes, as well as the dear friends of individual PWA’s from sending any PWA’s to Jim Johnson. I informed the entire network of gay and lesbian organizations, both locally and nationally, of his ulterior guilt-ridden motives. I rallied up whoever I could find to assist me. We spread the word in the straight and gay press, and by letters to friendly professionals in key positions in the medical organization. We presented them with a list of charges against Jim Johnson and his staff, and attached several personal statements of eyewitness accounts to support some of these charges which included: forging checks of PWA’s, writing a will for one PWA and naming the hospice manager as executor, administering medications improperly and illegally, having roach and rat infested facilities, restricting visitations to resident PWA’s when visitations were desired and would have been emotionally beneficial, subjecting resident PWA’s to a “change minister” and “change minister” psychological tactics, withholding food from one PWA who spoke against Jim Johnson, and much verbal abuse such as angrily berating a PWA who refused to participate in a rehearsed scam (for People Magazine) that would show that the hospice was well-run and that the residents were properly cared for. (This last mentioned PWA later committed suicide at Jim Johnson’s hospice.)
It worked! Hospitals and AIDS organizations soon refused to refer PWA’s to him, and many of his residents and staff transferred to other hospice operations. One year later Jim Johnson was out of business. But you say, “How in hell could this have happened!” There were three reasons why this went on so long. First, we desperately needed all the hospice care facilities we could find, and Jim Johnson DID put on a very good act in the press and among leaders of the gay community. We wanted to believe him. Second, Jim Johnson would defend himself to some people by threatening to file a lawsuit against them, which tends to scare off the more easily intimidated. With others, especially health officials, he’d say, “If things really are so bad, let the PWA’s try to find some other place to live!” For many PWA’s at that time, the alternative was living on the street. And third, AIDS hospice house operations were a new animal and not covered by current health code regulations.
This third point warrants some clarification. Except for a couple of larger residences, the hospices housed up to six people, usually consisting of five PWA’s and one live-in staff member. According to local laws in effect up until 1989, the maximum number of residents allowed without requiring a special license to operate a board and care facility is six. By limiting the total number of people living at each house to six, they were able to bypass existing licensing requirements for this kind of care provider. A few operators were licensed, but the others avoided the requirements. In 1987 and 1988 various groups and individuals (primarily from the gay and health care communities) succeeded in lobbying the California State Legislature to implement a state framework that would allow local jurisdictions to regulate a new license procedure to govern AIDS hospice houses. By 1989 the state provided that legal basis and cities and counties are now enforcing the established standards. The licensing regulations are important to ensure proper care for PWA’s and safe procedures for volunteers and staff.
The most encouraging reason for leaving a hospice is the development and use of newer and more effective drugs to control AIDS and its threatening opportunistic diseases. Many PWA’s can achieve a state of moderately stable health. The “rule” that most PWA’s will die within 2 or 3 years after contracting AIDS, is no longer true. Drugs, proper care, reduced stress, and constant self-determination are giving PWA’s priceless time. Those with improved conditions are encouraged to move out if their bed is needed by someone in poorer health. Sometimes PWA’s who are feeling better stay at the hospice to help those that are bedridden. PWA’s who no longer need a hospice care environment and who have sufficient income (usually from a combination of county and state aid), have several housing options available to them. The popular choice is to set up an independent or roommate living situation in an apartment. This is not only a welcomed move but an important realization of new hope.
Then there are other PWA’s who move into a hospice house on a temporary basis. Their medical condition is not serious enough to warrant living in a hospice facility, but they have no other place to live or no money to pay rent. This is a common situation that certain PWA’s face when they are released from a hospital after their first bout with a major illness. Because it was their first major illness due to AIDS, it tends to be their introduction to a new mode of living. The unanticipated need for a moderate level of constant post-hospitalization care catches the PWA without a supportive care residence. Some PWA’s can hide or ignore AIDS up to acquiring their initial opportunistic disease. At this point, they become so sick and often manifest “the signs” of AIDS that can cost them their jobs, their friends, their apartment, and so on. They need temporary housing, help in applying for financial aid, and emotional support. Assuming space is available, a hospice house can supply these basic essentials for the short term to allow the PWA to restructure his or her life.
The total number of beds available in the various Long Beach area hospices seems, at times, to be sufficient to meet the needs of the local PWA’s; but that is not typical. The operators and the hospital social workers routinely maintain contact with each other so that patients can be quickly assigned to available hospice space. Since the surrounding areas do not have enough hospice facilities for their PWA’s, these operators are part of a network of contacts that reach not only into neighboring counties but across the nation. People with HIV infection are desirous of moving to a metropolitan area that would better support them emotionally and politically, and be better equipped to treat them. A few years ago, half of all those PWA’s who sought refuge in Long Beach hospices were from outside this area. However, this has changed now that other areas are providing better and more compassionate care.
As recently as 1987, PWA’s who were ready for discharge from area hospitals were kept on hold a few extra days until a hospice bed, or some other bed became available. Patients who were well enough to leave the hospital to go to a place that would care for them were not well enough to be put out on the streets. At times, Project AHEAD, and a host of other AIDS support groups, including organizations such as AIDS Project Los Angeles would have to step in and find the discharged PWA an apartment or a hotel room and pay the cost for the first month or two until more permanent arrangements could be made.
The Condition of AIDS Treatments, the Early Years –
All varieties of hospice facilities came into existence not only because PWA’s are somewhat difficult to care for especially those who are not ambulatory, but also because of society’s tremendous fear that AIDS is socially or environmentally transmitted, a fear that has proven to be totally groundless and completely irrational. C. Everett Koop, Surgeon General, reported to Americans in 1988:
No matter what you may have heard, the AIDS virus is hard to get and is easily avoided. You won’t just “catch” AIDS-like a cold or flu because the virus is a different type… You won’t get the AIDS virus through everyday contact with people around you in school, in the workplace, at parties, child care centers, or stores. You won’t get it by swimming in a pool, even if someone in the pool is infected with AIDS… You won’t get AIDS from a mosquito bite… You won’t get it from bed bugs, lice, flies, or other insects, either. You won’t get AIDS from saliva, sweat, tears, or a bowel movement. You won’t get AIDS from a kiss. You won’t get AIDS from clothes, a telephone, or from a toilet seat. It can’t be passed by using a glass or eating utensils that someone else has used. The AIDS virus is transmitted through sexual intercourse, the sharing of drug needles, or to babies of infected mothers before birth. If we could replace “fear” with “concern,” the need for hospices would be much reduced. Unless PWA’s become very ill and need hospitalization, they can and should stay at home, whether that means with their parents, or spouses, or lovers, or roommates, or friends. Most of the time PWA’s are not “sick.” They are often not bedridden. Most are able to care for themselves. PWA’s can retain their jobs, do their laundry, attend religious services, have friends over for dinner, do their yard work, maintain an exercise program, wax their cars, clean their houses, shop for clothes, take vacations, and feel reasonably healthy. PWA’s can go for long periods of time, even years, without getting sick. (That is, without catching a virus or disease, such as the flu or pneumonia, that overly taxes their immune system.) With a combination of the most recent drugs developed and those to be readied in the next couple of years and with proper care to avoid catching colds and getting run down, many PWA’s have the ability to stabilize their health.
It may seem to be a misuse of terms to refer to a person who already has AIDS as “getting sick” or “staying healthy.” Once a person contracts the AIDS virus, isn’t he or she seriously ill? Period? Yes, AIDS dramatically suppresses the immune system which allows numerous kinds of bacteria and viruses that would otherwise be warded off. Some of these diseases come in the form of cancers and tumors that can spread throughout the body. These diseases that attack the immune deficient body are called opportunistic diseases. Without the body’s natural defense system working properly, these opportunistic diseases can be deadly. People who are involved in various ways with PWA’s, refer to PWA’s as being “sick” only when they have contracted a secondary infection. When a PWA is up and about and feeling good, we usually refer to him or her as being “healthy” or “well.” This fuels the positive concept that AIDS can be controlled. Perhaps AIDS will become as controlled and manageable as diabetes. Until there is a cure for AIDS, this concept, which may soon be a reality for many PWA’s, is helpful to maintain a good attitude and a feeling of hope.
A term often used in conjunction with AIDS is ARC. ARC stands for AIDS-Related Complex. (In some areas, this term is being phased out because it is somewhat ambiguous, but it does denote a general condition.) As used in the 1980’s, a person with ARC is one who has been infected with the AIDS virus but has not contracted one of the CDC’s (Centers for Disease Control) listed “primary” diseases attributed to the most serious stages of AIDS. The CDC refers to the listed diseases as opportunistic diseases because although they are common in the environment, generally the only “opportunity” they have of infecting a person is if that person’s immune system is seriously suppressed or deficient. HIV infection gradually destroys the immune system.
To better understand ARC, let’s first consider the meaning of an HIV-positive blood test and the official definition of AIDS. Testing HIV positive means that antibodies relating to HIV, (previously referred to in the United States as HTLV-III: Human T-cell Lymphotropic Virus, Type Three), is present in the blood. This indicates that a person was exposed to this virus. People can have a positive blood test and perhaps never get AIDS or ARC, although, as we consider the history of this disease, it seems that they very likely will. There are some documented cases of people who have tested positive for AIDS more than a decade ago and have not developed either ARC or AIDS.
Up until January 1992, in order to be diagnosed as having “AIDS,” two conditions need to be present: one must test positive for HIV infection, AND also have one (or more) of the specified opportunistic diseases. The three most often seen are PCP (Pneumocystis carinii pneumonia) which occurs in about 55 percent of the cases, KS (Kaposi’s Sarcoma) which occurs in about 22 percent of the cases, and CMV (Cytomegalovirus) which occurs in about 10 percent of the cases. Only those who met both of these conditions officially had AIDS.
Beginning in 1992, AIDS was redefined by the CDC to include also any HIV-infected person who had a T-cell count of less than 200. Since the AIDS virus first destroys T-cells, it is a better measure of the initial invasion of the disease. Because many people with HIV infection do not as yet have any of the listed opportunistic diseases, they are not counted in the “persons with AIDS” statistics even though they may be seriously ill and growing weaker. Adding those with a low T-cell count dramatically increases the official number of people who have AIDS more accurately to reflect the widespread extent of the epidemic. The number of PWA’s counted after January 1, 1992, may be double the 1991 figures.
So based on today’s standards, as mentioned above, ARC is the condition of having a positive HIV test with a T-cell count of MORE than 200 AND having illnesses OTHER than those on the CDC’s official list of opportunistic diseases of AIDS. Most, not all, ARC patients go on to develop “full-blown” AIDS. People with ARC tend to have much of the AIDS-related illness, but much less financial assistance. It should be understood that people can die from the ARC condition (because their immune system can be just as underpowered as that of a PWA) even though they may not officially develop AIDS. People with ARC usually have a more manageable stage of the AIDS virus. They are better able to maintain a higher level of health and often do.
The medical research community, both the private and governmental sectors, has been criticized (especially by PWA organizations) for not immediately and aggressively developing drugs and treatments to combat HIV infection. The criticism focuses on three issues: First, the Reagan Administration ignored the onset of AIDS and hesitated to put sufficient resources into prevention and treatment of the disease. Second, that the drug companies in conjunction with the FDA have not and did not aggressively pursue the development of drugs and vaccines for HIV infection during the first five years of this crisis. And third, the drug companies have been grossly overcharging for vital medications such as AZT, the first FDA-approved drug to fight AIDS. Special acknowledgment needs to be given to two U.S. Senators, David Pryor of Arkansas and Ted Kennedy of Massachusetts, for being the most outspoken opponents of the current drug industry’s policy of greed.
What adds insult to injury is that we, the taxpayers, paid for the development of AZT because it was a government program that engineered it. Burroughs Wellcome, the drug company whose only major expense in “developing” AZT was to test it. It has no basis for claiming that it needs to charge the exorbitant amount for AZT.
Patient advocacy groups, the federal and state governments, and large corporations, which feel the pain through mounting costs of medical plans, are asking hard questions about what drug makers charge. Congressmen and Senators leap before the TV cameras to decry outrageous profiteering. One frequent critic, Senator David Pryor, an Arkansas Democrat and chairman of the Special Committee on Aging, ominously notes that the U.S. is the only major country that regulates neither drug prices nor drug profit. AIDS victims were among the first to protest. They raged at Burroughs Welcome for putting a $10,000-per-year price on AZT, which slows the onset of the disease’s symptoms. They got the price cut twice. (Fortune, July 29, 1991) To hold costs — and premiums — down, some health-policy analysts believe Congress should consider ways to reduce prices of drugs for AIDS and other life-threatening conditions. Specifically, they are urging changes in the Orphan Drug Act, which provides tax credits and a seven-year exclusive marketing license to companies that develop drugs for disorders affecting fewer than 200,000 people. Dr. Lee of UC San Francisco points to the price of pentamidine [marketed by Lyphomed], which jumped from $24 a vial to $99.45 when its use became clear in preventing pneumocystis pneumonia [PCP], the most frequent killer of AIDS patients… To promote price competition, the Public Citizen Health Research Group and the American Public Health Assn. have petitioned the government to issue multiple licenses for AIDS drugs developed at public expense. Los Angeles Times, August 7, 1989.
The multiple licenses issue remains unresolved. Do people still wonder why the gay community is angry? Hundreds of thousands of people are dying now, and drugs companies are profiteering over drugs they didn’t even develop. You are damn right we’re angry!
In the pharmaceutical trade magazine, Drug Topics, June 17, 1991, the following update appeared: NIH MAY TRY TO VOID BURROUGHS AZT PATENT To lower the price of AIDS treatment drug AZT, the NIH [National Institute of Health] is considering legal action to invalidate Burroughs Wellcome’s patent. NIH director Bernadine Healy said the agency believes government scientists should be named as co-inventors. A Burroughs Wellcome spokeswoman said that company’s scientists conceived of AZT as a treatment for AIDS, so the patent is valid. The consumer group Public Citizen has also challenged Burroughs Welcome’s patent; Barr Laboratories has asked for approval to sell a generic version, vowing to cut Burroughs Wellcome’s $3,000 a year price in half.
I see so much anguish in the gay community over the AIDS epidemic. So many people have died and millions more are infected. Drugs companies are raking in huge, unconscionable profits on AIDS drugs.
According to the Journal of the American Medical Association doctors also create problems for people with HIV infection. In a survey published November 1991, more than half the physicians who responded to the inquiry said that they would not treat HIV-positive patients if they had a choice. Only 42 percent said that HIV-positive people are welcome in their offices. About 56 percent reported that they would feel uncomfortable if other doctors know they were treating AIDS patients.
Still, we seem to do so little — so damned little! The public at large seems not to care. Maybe it is because most people still see AIDS as “THEIR disease;” but that perception did change.
On November of 1991, Magic Johnson announced that he was infected with the AIDS virus. The entire country discovered AIDS. We finally found out that AIDS really does exist and that “important,” “moral,” “decent,” “heroic,” and “straight” people get AIDS too.
Oh my God! Maybe we should do something about it!
Within two weeks of Johnson’s announcement, AIDS was transformed from a “gay disease” to a human disease, the State of California released eleven new drugs for wider use, the federal government also place several new drugs on a “fast track” program to make them available sooner, and school boards are finally taking serious actions to educate students in a frank manner about AIDS preventative measures.
It is as if to say that all those who contracted AIDS previously were more expendable? And what about all the new cases that were transmitted in the past five years, many still not diagnosed? Couldn’t those infections have been avoided with massive, clearly explained AIDS prevention information? I am so angered that it took a heterosexual basketball star to bring a sense of urgency to this epidemic. All my friends and clients who have died during these past ten years are no less precious to their family, loved ones, and friends then Magic Johnson to the world.
How strange! When gays contract AIDS it is because they are engaged in immoral activities. When women (now the fastest growing AIDS group in America) contract AIDS through multiple partners they are “sluts.” But when a heterosexual MALE sports star contracts AIDS (through numerous female partners), he is a national hero; his endorsement and business ventures are made more secure, and he is invited to join President Bush’s National Commission on AIDS. And we wonder why there is anguish in the gay community?
Getting back to a more generalized discussion of where we are in the AIDS battle, progress can also be seen as encouraging. As recently as a few years ago, a PWA who contracted the most common opportunistic diseases, PCP (Pneumocystis carinii pneumonia), would be hospitalized. The patient’s immune system, which was not up to par, to begin with, would be greatly taxed in fending off pneumonia. He usually survived, but with an even less effective immune system intact. AIDS literally wears the body out. The second episode of pneumonia, which statistically (at that time) would recur in about thirteen months after the first, was extremely life-threatening and could deplete all the body’s abilities to ward off any additional invasions. If he survived this second assault, he would rarely survive the third.
This is no longer true. I have interviewed PWA’s who have experienced four and five bouts of PCP and had lived through them. I have talked with other PWA’s who have had one encounter with PCP and have not had a second, even several years later. This is because there are now medications and treatments that not only better treat PCP, but also better prevent its recurrence. The AIDS research community has made tremendous strides in focusing on new and innovative approaches to conquer the other AIDS-related diseases as well. There are newer AZT-like drugs such as d4T from Bristol-Myers and 3TC from Glaxo. In addition, two other completely new classes of drugs are being developed called TAT inhibitors and protease inhibitors which attack the virus’s ability to reproduce itself. However, this discussion is too technical for this book.
Since this book IS NOT intended for giving medical advice, I refer you to your local health clinic or gay and lesbian center for confidential counseling and HIV blood testing program information. These are also good places to find the latest reading material on all facets of the AIDS epidemic as well a listing of support organizations that may be helpful to contact.
For me, it is inappropriate to leave this discussion of AIDS in the medical arena as if it is purely an epidemic to be addressed and conquered by clinical and scientific minds. It seems as if the average American feels that he or she can do nothing to ease the pain and suffering caused by the disease or to alleviate the anguish caused by indifference, ignorance, judgment, fear, abandonment, hatred and rejection. It is not only the scientific mind that is called to duty; it is also the sleeping heart that is challenged to awaken. Many people talk about God, religion, the Bible, and morality, but seem incapable of forgoing judgment in order that they may truly respond to this crisis in human compassion. Truly spiritual and compassionate people are revealed not by their words but by their actions.
I am not asking you to provide a cure for AIDS; that is for scientists to do. I am asking you to develop an understanding, respect, and kindness for the PEOPLE who have AIDS. I cannot tell you what to do, I can only relate what I have seen and done along with my journey. For me, the AIDS epidemic has been the most painful, most frustrating, and most emotional experience of my life. For me, it has forever enhanced the preciousness of friendship and my value for human life. I have watched many people physically fade away from my presence. Some of my dearest friends have gradually slipped from my life into sacred memories. It is so difficult to watch, to experience the farewells. It is such a helpless feeling not to be able to stop this devastation of humanity.
When I talk to people with AIDS or HIV infection I try so hard to be optimistic. I try to encourage a sense of hope in them, and I trust that I have done this, and I will continue to do so. In many cases, I draw my strength from them. They share their courage with me. It has been the tug of war in this decade of emotions. I am depressed, I am energized. I am weak, I am determined. I am empty, I am renewed. I am without hope, I am hopeful. I am hurting. I am alone. I am sharing. I am determined. I am meaningless. I am giving. I am loving.
UPDATE: 2017
There really is not much to update about hospices houses except that the operators and staffs have become much more professional. There are more rules and regulations that firm up proper care and greatly benefit PWAs.