| GBGM > Health & Welfare Ministries > HIV/AIDS Focus Papers |
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Cathie Lyons is the associate general secretary for Health and Welfare Ministries, General Board of Global Ministries, The United Methodist Church.
(Some information was updated 6/93)
| Description of AIDS and its Cause | Clinical Manifestation | Transmission | Determining if One is Infected with HIV | Incidence | Major Risk Factors | The Use of Alcohol by Persons with HIV Infection | Caring for a Person with HIV | Psycho-Social and Treatment Needs of People with AIDS | Prevention | Things Individuals in All Groups Need to Know | Research and Treatment | Notes |
This Focus Paper has been prepared in response to requests for a basic information piece covering the full spectrum of HIV infection from the asymptomatic state to clinical AIDS.
As this paper is being mailed to you, PWA columnist, Terry Boyd clings to life hope-filled that he might be able to see his book, Living with AIDS: One Christian's Struggle, through to publication by C.S.S. Publishing Company. Living with AIDS has been endorsed by Bishop Leontine Kelly whose words of gratitude about the book appear on its back cover.
A million thanks go to Ralph Dessem, a United Methodist on the C.S.S. staff, who has worked long and hard to get Terry's book off the press quickly. Richard Glodo, Terry's careprovider, believes that Bishop Kelly's words about Terry's book and Terry's desire to see his book published are keeping him alive against great odds.
Terry's column this month includes excerpts from "Eulogy", the column he wrote to be published on the occasion of his death and which appears as the final chapter in his book.
With kindest regards,
Cathie Lyons
Associate General Secretary
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Acquired Immune Deficiency Syndrome (AIDS) is a disease caused by the Human Immunodeficiency Virus (HIV). The virus attacks the body's immune system making HIV-infected individuals vulnerable to opportunistic infections, cancers and neurological disorders.
The virus which causes AIDS primarily attacks white blood cells called T-4 helper cells that are part of the body's internal defense against disease. The virus may also affect the central nervous system.
An infected person's immune system responds by developing antibodies to fight off the virus. The body's ability to produce disease-fighting antibodies eventually becomes limited in HIV-infected persons as the virus reproduces and destroys the body's T-4 helper cells.
HIV infection may lead to diseases and illnesses which can take many forms. The problems associated with HIV infection range from the complete absence of symptoms (asymptomatic), to mild illness, to debilitating neurological disorders, to conditions which can lead to death.
"HIV disease" or is new terminology being used to cover the whole spectrum from infection with HIV on through to the diagnosis of AIDS.
Some 1.5 million persons in the United States are believed to be infected with the causative virus (HIV). For every person who has been diagnosed with AIDS there may be as many as ten persons who have HIV disease.
These persons may have no signs of illness and may be unaware that they are infected. (All persons who are infected with the virus are capable of transmitting the virus to others through sexual activity in which there is an exchange of infected semen, vaginal fluid or blood, and by sharing contaminated needles and works.)
The incubation period before any symptoms of HIV disease appear varies significantly from person to person. Some develop symptoms within six months to two years of exposure. Many others, however, may be infected for as many as seven years or more and shown no signs of illness. Research is being done to determine why some infected people become fatally ill while others have milder symptoms or remain symptom-free.
Symptoms of HIV disease include:
About 8.3% 1 of HIV-infected people in the United States have been diagnosed with AIDS to date.
The condition called AIDS represents a syndrome of late- stage diseases in which the immune system is unable to fight off viruses, bacteria, protozoa, and fungi resulting in infections and diseases which frequently lead to death.
The symptoms that individuals with HIV develop are related to the opportunistic diseases that take advantage of the body's greatly diminished ability to fight off illness. These symptoms are usually persistent, difficult to treat, and progressively debilitating. AIDS symptoms may include:
Specific diseases that generally don't affect healthy adults are linked with AIDS. In the United States, about 85 percent of the people with AIDS have had one or both of two rare diseases: Pneumocystis carinii pneumonia (PCP), a parasitic infection of the lungs, and Kaposi's sarcoma (KS), a rare cancer which appears as blue-violet or brownish spots on the surface of the skin or in the mouth or digestive-tract.
Other opportunistic diseases include tuberculosis, certain non-Hodgkin's lymphomas and unusually severe infections with yeast, cytomegalovirus, herpesvirus, disseminated histoplasmosis, bronchial or pulmonary candidiasis and parasites such as Toxoplasma or Cryptosporidia.
Neurological involvement occurs in many, perhaps a majority of, people with AIDS as the disease progresses. "AIDS dementia (AD), also called HIV encephalopathy . . . may include auditory, visual, and other sensory disturbances, muscular dysfunction, gross personality changes, memory and judgment impairments and/or a severe loss of intellectual, social or occupational abilities. The most common cause of AD is believed to be direct involvement of the brain by HIV." 2
Unlike flu or measles, HIV is not transmitted through the air; it must get into the bloodstream to cause infection. For this reason, HIV positive people don't pose a risk to others through any form of casual contact. There is no evidence that AIDS is transmitted through coughing, sneezing, food preparation, drinking fountains, toilet seats, mosquitoes, being around an infected person on a daily basis, or donating blood.
HIV is carried in blood, semen, vaginal secretions, breast milk and other body fluids 3 of an infected person. It is transmitted from one person to another by three routes:
Transmission through blood-to-blood exposure to infected blood occurs in persons sharing contaminated needles, syringes, and works during intravenous (IV) drug use. Small, even invisible, particles of infected blood can remain in one's drug paraphernalia and can be injected into the bloodstream of the next user.
The risk of HIV transmission through blood transfusions and the transfusion of blood products has been almost eliminated since all U.S. blood banks began testing donated blood for antibodies to HIV in April 1985. There may be some risk to receiving blood if it was too early for the virus to show up when donor blood was tested. There is no risk of HIV infection from donating blood. Blood collection centers use new transfusion equipment for each donor. Persons concerned about transfusions can seek the advice of physicians about alternative ways to assure having virus free blood available.
You cannot tell if a person is infected with HIV simply by looking at him or her. HIV infection can be determined only through a blood test in which a small quantity of blood is drawn and tested. Persons who are infected with the virus usually develop antibodies to the virus within three to six months after infection. 4 The ELISA test is the antibody test one usually hears about. It stands for Enzyme-Linked Immunosorbent Assay and is the test used at clinics, hospitals, counseling and testing centers. The test looks for the presence of antibodies that one's blood might have developed to fight the virus if one has been infected. If the ELISA test indicates that antibodies are present, confirmatory tests are run.
Who should be counseled and tested? You should be counseled and tested if, since 1978:
Why should one be tested? Out of concern for one's self and others, and to protect oneself and others from unnecessary contact with the virus. Persons who are already infected must take responsibility not to transmit the virus to others and to protect themselves from reinfection.
Persons who know they are infected should voluntary contact those to whom they might have transmitted the virus (or let a health official make the contact) so these individuals can take necessary precautions, seek counseling, testing and medical attention.
Women who are at risk of having been infected need to know their HIV status in order to seek care for themselves and as they make decisions regarding pregnancy and child birth. In addition, therapeutic agents such as AZT are being used successfully with HIV infected individuals to help protect them against developing HIV related illnesses and to decrease the severity of illness if and when it occurs. Early medical intervention and treatment are very important.
"Early medical intervention for HIV infection and HIV related illness can alter the natural history of infection by:
- increasing the duration of wellness;
- decreasing hospital stays and costs; and
- transforming the disease into a chronic illness that may be controlled for most persons by regular medical supervision.
HIV positivity (infection) should be linked to medical care, health information, counseling and support for HIV infected individuals, their families and significant others." 5
HIV Testing and Privacy. There are two ways in which the results of HIV antibody tests are kept "private". If the test is confidential, the results will be available to a limited number of medical personnel. Persons who are contemplating confidential testing should inquire ahead of time about who will know the test results, under what conditions and how the information will be stored.
Persons who want their test results to be even more private should seek anonymous testing. With anonymous testing, a person's test results cannot be traced to him or her. In most cases, all information and results are numbered, and the person tested is the only one who knows the number that has been assigned. Public health departments and community based AIDS service organizations can provide information about where to go for confidential or anonymous testing.
Since the initial recognition of AIDS in 1981, it has become a global pandemic with as many as 10 million people infected with HIV worldwide. From 1981 - 1986 over 38,000 Americans were diagnosed with AIDS. Since then the number of cases has more than tripled to a total of 124,987. 6
There is a broad spectrum of opinion about the extent of HIV infection in the heterosexual population in the United States. Overall, the Committee on the National Strategy for AIDS (of the Institute of Medicine: National Academy of Sciences) concludes that over the next 5 to 10 years there will be substantially more HIV infection in the heterosexual population and that these cases will occur predominantly among those who are also at greatest risk for other sexually transmitted diseases and drug use.
Persons at increased risk for being infected with HIV include:
Persons with HIV disease are urged to abstain from the use of alcohol. Alcohol has immune-suppressant properties which further impede the ability of the body's immune system to function effectively. Alcohol also impairs judgment and affects one's ability to protect oneself and others against virus transmission.
In most instances, persons with HIV disease can be cared for at home by family and friends. Home care training is available through most community based AIDS service organizations as well as through local Red Cross Chapters, Volunteer Nurse Associations, and Hospice Care programs. Home hospice care is chosen by many persons in the final weeks or months of life. Personal care and HIV infection control can be understood and administered effectively by prospective care providers, volunteers and loved ones.
Health professionals and infection control specialists are available to train community center workers, day care providers, foster and adoptive parents, teachers, classroom workers and other service providers regarding infection precautions and how to handle, care for and dispose of bodily fluids which might be infectious.
The best treatment builds on the person's past coping abilities, capitalizes on strengths, maintains hope, shows continued human care and concern. At the time of diagnosis and throughout the course of treatment, persons living with AIDS should be given up-to-date information about AIDS, its causes, modes of transmission, treatments available, and sources of care and social support. Suicidal thoughts and plans should be discussed openly to allow persons to ventilate feelings of despair. Assessing the seriousness of suicidal intent and the need for intervention is also important. Feelings about homosexuality/bisexuality, drug-taking habits, guilt that one might have infected others, and anger over discrimination and stigmatization should be listened to and explored with attitudes of openness and appreciation for what the person is feeling. Intravenous drug users should be given full assistance in finding treatment.
Persons with progressive disease should also be urged to express their feelings about being ill and encouraged to talk about their fears, anger and sadness. They should be treated with utmost concern and compassion and assured that everything will be done to provide continuity of care and relief from distress.
For persons who are afraid of being abandoned, frequent visits from friends, family, clergy and health care workers should be arranged. Support groups for persons with HIV infection and AIDS, as well as for their care providers and loved ones are critically important.
Experience has shown that support groups should be open-ended, allowing people with AIDS to attend intermittently if they choose. Support groups can help persons dismiss untrue notions about AIDS, and realize that although they have every reason to feel sad, frightened, and angry, they can still control their attitudes, make their own decisions, manage their lives and seek assistance when necessary. Support groups encourage persons to participate actively in their own treatment, contribute to treatment decisions, and augment medical procedures with attention to diet, spiritual growth, adequate rest, exercise, and relaxation.
Referral for mental health evaluation and therapy should be made if a person has symptoms of anxiety or depression which threaten to become disabling or to interfere with one's overall treatment regime. Persons with AIDS should be made aware of local and regional community based AIDS organizations and the assistance and support they have to offer. Home care programs need to be established in every community to assure 24-hour attention and monitoring of symptoms and their associated pain, nausea, and labored breathing.
Concerns over death should be discussed and persons with AIDS should have religious and spiritual support available; should receive help to secure benefits and financial assistance, to obtain legal help in preparing a will, and to prepare written medical directives about their care during terminal stages, notification of clergy and family, and funeral arrangements. Persons who are rapidly losing mental acuity should be encouraged to appoint a legally recognized guardian as soon as possible.
There is no vaccine against AIDS or any treatment so far that can reverse the damage done by HIV to the immune system. People can and must learn how to protect themselves and their loved ones from HIV infection. 8 Following are some basic elements of AIDS information related to prevention. These elements can be adapted to varying degrees of specificity.
Schools and other important community institutions, such as religious organizations, families, and voluntary organizations can adapt the presentation of this information to fit within their value systems while providing scientifically sound, accurate and frank information. Within this framework, individuals should be given information to help them develop responsible life-affirming / health-affirming behaviors which will protect themselves and their contacts from virus transmission.
The specific wording and style of presentation, once developed, should be pretested to ensure effectiveness. All materials and presentations should be made available in the primary language of the individuals being addressed. Seek expert advice, consultation, and creative assistance from health care providers, religious counselors and health educators. The following information is adapted from materials distributed by the federal Centers for Disease Control and the New York Department of Health for use in developing an AIDS prevention education session.
HIV has been shown to be spread from an infected person to an uninfected person by:
An individual can be infected with the virus that causes AIDS without having symptoms of HIV infection or appearing ill. Infected individuals who are asymptomatic can transmit the infection to others. Once infected, a person is presumed infected for life, but actual symptoms may not appear for many years.
A single exposure to HIV may result in infection.
Youth who choose to be sexually active must be fully informed about precautions they must take to help reduce the risk of virus transmission for themselves and their sexual partners. They must have access to condoms and information about the proper use of condoms, as well as access to quality health care designed to meet their special medical and psycho-social needs.
Though researchers are working to develop a vaccine, the task is difficult because HIV can alter its form in the human body. There is no cure for AIDS at this time, nor is there any treatment that can reverse the damage that has been done to the immune system. A number of therapeutic agents including AZT, DDI, and ganciclovir are showing promise, some for their potential to curb the ability of the virus to reproduce itself inside human cells. These agents continue to be tested to learn more about their toxic effects and whether lower dosages can be used with comparable benefit and fewer side effects.
For information about clinical trials and treatment programs, contact your physician, public health department, community based AIDS organization or call the AIDS Clinical Trials Information Service: 1-800-TRIALS-A; FAX: 1-301-738-6616; TTY/TDD: 1-800- 243-7012; International Line: 1-301-217-0023.
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4 There have been some instances in which HIV infected persons have not developed antibodies to HIV.
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Terry submitted this column to the Network Office a number of months ago to be used on the occasion of his death. As these words are being written, Terry clings to life hope-filled that he might hold a copy of his book in his hands before he dies. Terry wrote these words to you who have meant so much to him as readers of his column and as spiritual sojourners with him during his days of living and dying with AIDS.
There are a few things I would like to tell you that I think are very important. Let them be my legacy.
At the doorway of death, I find myself very poor. I have only my faith in God and the love that many of you have given me. I have no idea what this new adventure of death will be like. My faith tells me it is not the end.
Death from AIDS is a long, slow process. Painful, soul- wrenching, debilitating. I hope that you, having been with me during this time, will remember and offer your care and love to others who are suffering.
The greatest part of my legacy is a thing which a very special friend described to me as "The Embracing of Souls".
It is something that many of us only experience once or twice during our lifetimes. It describes those very special people who come into our lives at odd, unpredictable times. Love flows between them like water in a stream. It is a very special gift from God. I believe this 'embracing of souls' is the spirit of God working in our lives. St. John must have known about the 'embracing of souls' when he said that "God is Love". To experience the 'embracing of souls' is to experience God.It is this embrace of souls that will prepare you for whatever suffering you may have to experience. It will allow you to bear up and even to give thanks in the midst of suffering.
I want you all to know that I will always love you and will think of you often. If it is possible, as I believe it is, I will pray for you and keep you in my heart always.
Until I see you again, all my love.
Terry Boyd's PWA Column is a monthly feature of the AIDS Ministries Network Alert Focus Papers. Terry, 39 years old, is a member of Lafayette Park United Methodist Church in St. Louis, MO, the Missouri-East AIDS Task Force and the Interagency Task Force on AIDS Ministries. Terry, also, serves on the board of Doorways, a community based AIDS service organization.
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by Terry L. Boyd
About the book from the Foreword
Terry Boyd's writings during the last year of his life represent the faith journey of a man who has no illusions. He is going to die and he knows it. The reality of death is a matter he has to deal with. In the process, Terry has developed a spirituality sufficient for the task. Herein you will read about this spiritual journey, the milestones along the way, the importance of prayer, his ability to rely on God and experience God's presence. Terry also writes about the fear, bigotry, isolation and financial hardships which too often follow a diagnosis of AIDS and which persons of faith are called to address.
"Having AIDS is just plain awful," Terry writes. "But where the Lord finds suffering in life he provides compensating grace that somehow helps the sufferer to make it through." This compensating grace becomes for Terry the joy of his life. Terry's book is about the miraculous power of faith in the midst of sorrow and despair, about the debilitating nature of the disease and the all-pervasiveness of God's love and grace.
Terry's belief in a life everlasting comes shining through when he writes about death, asking: "Do we really believe the promises of our religion? Do we really believe what we are told about the promises of Christ and eternal life?"
Throughout his days of living with AIDS, Terry has been other-directed: concerned about the well being and feelings of loved ones and friends, concerned to let them know that his love for them will live forever and that he will see them again.
Terry confesses that he has lived with a childlike desire to really see Jesus and that he has experienced the presence of the Holy through those who have reached out to him. Terry says it best in these simple convincing words of faith: "I know Christ is present. He is there in those comforting arms. He is there in the tears. He is there in love, truly and fully. There stands my Savior." To read Terry's book is to be touched by the life of a man whose days and months of living with AIDS transformed the lives of those whose lives he touched.
Faith is a rod by which we measure a life. When I visit Terry I take a ladder. Thanks for the soul's embrace, Terry: for the "love that flows between two spirits like water in a stream." AIDS in finite. Love is infinite. AIDS has no power over the love which God has given.
by Cathie Lyons
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The red ribbon and globe is a symbol of UNAIDS's Global AIDS Program, http://www.unaids.org.
HIV/AIDS Ministries Network Focus Papers are a publication of the Health and Welfare Ministries , General Board of Global Ministries, The United Methodist Church, Room 330, 475 Riverside Drive, New York, NY 10115. Phone: 212-870-3909. FAX: 212-749-2641. E-MAIL: aidsmin@gbgm-umc.org. Focus Papers, unless otherwise noted, may be quoted, reproduced and distributed with credit being given to Health and Welfare Ministries and the authors. These focus papers were written several years ago there some information is outdated.
The HIV/AIDS Ministries Network is a network of United Methodists and others who care about the global HIV/AIDS pandemic and those whose lives have been touched.
