Life Doesn't Have to End
Life Doesn't Have to End
The HIV Epidemic And Historical Context For "Life Don't Have To End."
Jamie L. Mignano, RN, MSN, MPH
In June 1981, the CDC issued a report about five previously healthy men in Los Angeles dying of pneumocystis pneumonia (Centers for Disease Control (CDC), 1981). A year later, over 400 individuals were identified with this disease - dying from pneumocystis pneumonia or a rare form of cancer, called Kaposi's sarcoma. The disease was largely affecting gay white men. At this time, the cause of the disease was still unknown. In June of 1982, this condition became known as GRID - Gay-Related Immune Deficiency - since most of the cases at this time were in homosexual men (The New York Times, 1982). The CDC subsequently began to call this disease AIDS - Acquired Immune Deficiency Syndrome.
Between 1983 and 1984 two researchers, Dr. Luc Montagnier of France (Barré-Sinoussi, 1983) and Dr. Robert Gallo of the United States (Popovic, 1984), isolated the agent of this disease, calling it by different names. At the beginning of 1985 it became known as the etiological agent of AIDS (Marx, 1985) and in May 1986, this virus was named the Human Immunodeficiency Virus (HIV) by the International Committee on Taxonomy of Viruses (Coffin J, 1986).
After 6 years of watching friends and family members die, the first treatment for HIV was approved by the FDA in 1987. Zidovudine, commonly known as AZT, was used in high doses and demonstrated some success in prolonging life for individuals suffering from advanced AIDS (U.S. Food and Drug Administration, 2009). In the same year, President Ronald Reagan used the words "AIDS" for the first time in a public speech.
Despite the use of AZT and the emergence of another "AIDS drug" a couple of years later, this combination therapy was not fully effective in treating HIV. In 1996, a new drug class emerged, called Protease Inhibitors. These drugs bore the beginning of "Triple Therapy" or "HAART - Highly Active Antiretroviral Therapy." When used, together, drugs from three different classes were proven to "attack" HIV in different ways and were successful in suppressing, but not eliminating, HIV. In a period of approximately ten years, the death rate from HIV disease was reduced by 50 to 80% and changed from a nearly universally fatal and catastrophic illness to what is now often a manageable chronic illness (Delaney, 2006).
The advent of HAART in 1996 was profound, however, not without challenge to the individuals living with the disease. In its beginnings, HAART brought with it significant side effects, drug toxicities and tremendous pill burdens, impacting the quality of life for individuals taking them and making it difficult to live with the disease anonymously. Many of the stories you will read in this book demonstrate courage and perseverance - overcoming the late '90s and early part of the new century with HIV. For many, if you didn't die from AIDS, you suffered from the physical ramifications of prolonged immune suppression, as well as the mental and emotional turmoil associated with treatment and maintaining dignity and privacy.
The Ryan White Comprehensive AIDS Resources Emergency Act (Ryan White CARE Act)
The Ryan White Comprehensive AIDS Resources Emergency Act (Ryan White CARE Act) is the largest federally funded program in the United States for people living with HIV/AIDS. The act sought funding to improve availability of care for low-income, uninsured and under-insured victims of AIDS and their families as a payer of last resort (Health Resources and Services Administration). Ryan White and his mother found out he had HIV in 1984 at the age of 13, infected through a blood transfusion and one of the first hemophiliacs to be diagnosed with the disease. Ryan Whi