AIDS Testing, Treatment, and Services

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INDUSTRY SNAPSHOT

Hampered for years by political complacency and social bigotry, AIDS testing, treatment, and services have blossomed into enormous industries scrambling to deal with the disease on a variety of levels, including research into a vaccine; development of drugs to combat symptoms and improve quality of life; faster, safer, less intrusive, and more accurate screenings; information resources for researchers, patients, and the public; and support centers for patients and their families. By the middle of the first decade of the 2000s, U.S. spending on AIDS drugs alone was estimated at between $5 billion and $7 billion a year, and was expected to continue rising by 8 percent each year.

In 2005, health experts reported that a total of 65 million people had been infected with HIV since 1981, resulting in a total of more than 25 million deaths. The total number of people living with HIV in 2005 was thought to be 38.6 million, with about 4.1 million new infections recorded that year.

Aside from the continuing scientific hurdles of developing more effective treatments, the central problems facing the industry are the economic and social dynamics of delivering care. Worldwide, only a small fraction of those who could benefit from human immunodeficiency virus or HIV-related services ever receives testing or treatment. An estimated 20 percent of HIV-positive individuals in low- and middle-income nations received treatment in 2005, according to UNAIDS. Things were even worse on the prevention front: less than one in five at-risk individuals had access to prevention services that year. In addition, testing was available to one of every eight people.

In the United States, HIV-related illnesses were responsible for approximately 16,000 deaths annually during the middle years of the first decade of the 2000s. Due to both the social stigma and uneven access to medical care, conventional wisdom holds that in the United States at any time, 50 percent of the HIV-infected population remains undiagnosed, risking potentially more severe symptoms for the carriers of the virus along with the attending danger of passing it to others. Infection rates are vastly higher abroad, particularly in sub-Saharan Africa, which was home to about two-thirds of the world's HIV-positive population in 2005.

ORGANIZATION AND STRUCTURE

Acquired Immune Deficiency Syndrome (AIDS) is the name given to the third stage of HIV infection in which the body's immune system has declined to the extent that complications develop, including unusual infections or cancers, severe weight loss, and mental deterioration (dementia). As of 2006, AIDS, caused by the human immunodeficiency virus (HIV), was always fatal, although thanks to rapidly developing drug treatments, patients were increasingly able to live healthy lives for well over a decade after contracting HIV.

HIV is a retrovirus that infects humans through its contact with tissues of the vaginal or anal linings, the mouth, eyes, or a break in the skin. HIV infection progresses slowly and the virus remains in the body during all three stages of the disease. The first stage, or primary infection stage, occurs within weeks of exposure to the virus, often appearing to be an illness such as the flu or mononucleosis with recovery in a few weeks. The second stage is a long period of infection without symptoms that lasts an average of eight to ten years. The third or symptomatic infection stage is known as AIDS.

There are four primary ways in which a person can become infected with HIV: through unprotected sexual contact with an infected partner; by sharing intravenous needles with an infected person; in the pre-natal stage from an infected mother; or by receiving infected blood through a transfusion. Especially in the United States and other industrialized nations, this last avenue of infection is now quite rare thanks to blood screening and related efforts. New treatments for protecting newborns from contracting the virus from their mothers has also reduced the incidence of prenatal transmission of the disease.

Piecing together an economic profile of AIDS in the United States is not an exact science because of chronic under-reporting and the decentralized nature of treatments and services. In August 2003, the Centers for Disease Control and Prevention (CDC) of the U.S. Department of Health and Human Services offered these facts: "Researchers estimate that the cost of lifetime treatment for a person with HIV now averages about $155,000. Estimates are that 40,000 people are infected yearly, resulting in an annualized cost of more than $6 billion. The cumulative cost of lifetime treatment increases by more than $6 billion yearly if the number of infections stays steady, as it has over the last decade. In the last five years alone, an estimated 200,000 people have been infected with HIV. Treating them over the rest of their lives will cost the nation $31 billion."

One way to define the scope and impact of the domestic AIDS-related industry is to look at infection and mortality rates. As of 2004, the CDC, based in Atlanta, Georgia, indicated that a total of 934,862 AIDS cases had been reported in the United States since July 8, 1982, when these statistics were first collected. Of that number, 756,399 were males and 178,463 were females. In that same period, 9,443 children below the age of 13 were diagnosed with the AIDS virus. AIDS deaths totaled 529,113 by 2004. The modes of AIDS transmission, in cases where they had been clearly identified, were broken down as follows: 47 percent were men who had sex with men, 27 percent of the cases were the result of heterosexual contact by both men and women, and 17 percent originated with injected drug users.

Several elements of AIDS-related industries are more visible than others. Possibly the most visible of these are pharmaceutical companies. Research and development is the hub of the AIDS industry and accounts for the most spending, directed both at pure research into the disease's mechanics as well as at shorter-term approaches to manage its symptoms.

A second major arm of the AIDS-related industries is not a business but government agencies. In the United States, much of the focus of AIDS policy, as well as the source of research funding, has rested with two agencies, the National Institutes of Health (NIH) and the CDC. These agencies are part of the U.S. Department of Health and Human Services, which contributes to the underwriting of research at drug companies and at educational institutions throughout the country. NIH is the principal biomedical research arm of the federal government. The CDC, part of the U.S. Public Health Service's efforts to control infectious diseases, works with state health officials and is a repository of statistical information about AIDS and other diseases.

This country's general AIDS policy is formulated through the Presidential Commission on AIDS, established under the administration of President Ronald Reagan in 1987. The commission has been a source of controversy since its inception. High profile members, such as basketball great Magic Johnson, have resigned from the commission, complaining the body was not serious about addressing all AIDS-related issues, including directing enough funding to research and development. During the early years of the disease's appearance on the national scene, both the Reagan and the George H.W. Bush administrations were roundly criticized for what critics saw as a halfhearted commitment to finding a cure for AIDS.

The third major segment of the AIDS-related industries involves the private and quasi-private, locally funded, and foundation-based enterprises classified as AIDS service organizations or ASOs. Some of the largest ASOs generate and distribute millions of dollars for research and education and prevention efforts. Smaller ASOs may be involved in work at the community level, such as distributing condoms or helping individuals find medical testing or housing. While dwarfed by government agencies and the large pharmaceutical companies, ASOs generate funds used in research, provide direct services, and are beneficiaries of funding from government sources. Related businesses such as condom manufacturers, medical supply companies, health food stores, and home health care aides, are also affected by AIDS, but do not generally break down the impact the disease has on their financial operations.

The CDC issues a handbook each year listing national organizations providing HIV and AIDS services. Virtually all of these are either governmental or nonprofit. Some are funded by significant private donors such as the Rockefeller Archive Center. Others are funded by religious organizations such as the Presbyterian AIDS Network. Many are community-based, such as the Gay Men's Health Crisis Center in New York, the San Francisco AIDS Foundation, two of the largest, and the Madison, Wisconsin-AIDS Network. Although it is entirely inaccurate to characterize AIDS as only a homosexual disease, many ASOs are based in communities where substantial gay populations are located. The National Prevention Information Network (formerly the National AIDS Clearinghouse) has reported more than 19,000 ASOs, many of which cropped up in the years 1982 to 1986, when the general public's awareness of AIDS also increased. Such organizations, however, have been subject to criticism as well. Some critics have suggested that the proliferation of AIDS-related organizations has a tendency to divert money from services and research into salaries and organization-based expenses.

Federal funds directed toward AIDS research, treatment, prevention, and education (other major elements...