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By Tom Smith, Ph.D.
The Beginning
By now, 30 years after the Center for Disease Control reported in 1981 that some young gay men were treated for pneumocystis carinii (PC) and/or cytomegalovirus (CMV) and candidal mucosal infection and strange purple lesions called Kaposi’s Sarcoma (KS) that was ordinarily found in very old Jewish men of Northeastern European descent, almost everyone all over the world has heard of the acronyms HIV/AIDS: Human Immunodeficiency Virus, a retrovirus (formerly known as HTLVIII) and Acquired Immune Deficiency Syndrome.
Thirty years ago, in 1981, this heretofore strange disease stuck young homosexual men in New York, Los Angeles and San Francisco and was called Gay Related Immune Deficiency disease (GRID). Not yet in the public eye, in Africa, it was called “Slim Disease” because the person slowly wasted away to a living skeleton.
The acronyms of PC, CMV, KS and also MAC (Mycobacterium Avian Complex), called Opportunistic Infections (OI), struck fear into thousands of young men because hearing them meant that one was going to die … and soon. As far as diseases go, HIV/AIDS, left untreated (and there were no treatments at that time), is an insidious, ugly, disfiguring and gruesome disease and was killing men in the blossom of their life and mothers and fathers in Africa.
It was not until 1984 that the virus that causes AIDS was isolated and the world finally knew what was causing this terrible disease. A virus would invade the T-cells of the immune system and take them over and replicate itself and then burst out of the T-cell killing it and thus beginning the gradual destruction of the immune system. A person was considered to have AIDS when their T-cell count fell below 200 or if they became sick with one of a list of opportunistic infections. Between 1981 and 1984 there was, in the words of Robert K. Bolan, MD, one of the first doctors in San Francisco who clinically recognized AIDS, an “unfolding horror show” that seemed to have no end. My dear friends died. Billy died. Peter died. Steve died. Joe died. Roland died. José died. Ernie died. Kevin died. Jim died. Anthony died. Bob died. Jason died and on and on and on and on …
For almost four years, due to political indifference, little was done to fund efforts to understand and combat the disease. President Ronald Reagan did not even mention the word AIDS until 1985. After all, it appeared to be a disease of the disenfranchised and hated. The emerging catastrophe of HIV/AIDS, one of the great, great human health tragedies of our time, was ignored due to bigotry, racism, moral judgment and political lassitude!
It was difficult to have a public discussion of a disease that involved sex and homosexuality at that, intravenous drug use, blood, semen and a slow wasting away accompanied by esoteric diseases. It struck great fear into people everywhere. What was infectious, many thought contagious, spread through touch, toilet seats, used dishes, towels, kissing and casual contact. And, we did not know what to do. Fear was rampant and people’s responses, repugnant.
Nevertheless, by 1983 the CDC issued its first prevention recommendations on how to prevent sexual, drug related and occupational transmission. By 1985, state and local health departments nationwide were funded to implement HIV prevention programs, guidelines for blood screening were issued and the FDA licensed the Enzyme-Linked ImmunoSorbent Assay (ELISA ) to test for HIV antibodies. We finally had a test to see if one was infected. In April of 1985 the First International Conference on AIDS was held. Most recently, the Eighteenth International AIDS Conference was held in Vienna Austria in July of 2010.
Still, at the time of the first conference there was no treatment for AIDS. People just died.
Finally, in 1987, AZT (zidovudine or retrovir) became the first anti-HIV drug approved by the FDA. Not only was there hope on the horizon of despair, but also the U.S. launched a massive public information campaign and the CDC established the AIDS National Clearing House and the first counseling and testing guidelines were issued. The following year the brochure Understanding AIDS was mailed to every U.S. household describing the disease and that it was contracted through intimate contact with bodily fluids; namely, blood and semen, and not casual contact. Additionally, the CDC significantly expanded state and local prevention funding. This was a major turning point in the fight against HIV/AIDS.
However, there remained substantial stigma and fear about the disease. African-American communities began to get hammered and there was a great deal of denial that precluded effective prevention, testing and treatment. After all this time, this was still considered a gay white man’s disease. Even children were shunned; the most famous being Ryan White, a hemophiliac who contracted the virus through a blood transfusion. The national notoriety he received led to the Ryan White Care Act that to this day, thanks to recent (2010) legislation by Congress, expands access to treatment and care and also in 1990 the President signed the ADA (Americans with Disabilities Act) providing legal protection for those with HIV/AIDS.
In January 1994, Arthur died. I still miss him so very much.
The Middle
By 1995, 500,000 cases of AIDS were reported in the United States and almost 50,000 dead. We were losing the battle and in Africa they were losing entire generations. Sub-Saharan Africa was and remains the hardest hit by HIV/AIDS with South Africa and Zambia at the time taking the lead with 15-20% of the population infected. By 1995, over 24 million people had been infected with HIV and over 2 million died in Africa alone and that number would increase significantly. As of 2009, 16 million, 600 thousand children worldwide have been orphaned by the disease.
By 1996 attention began to be given to prenatal infection and how to prevent HIV infection of newborns. The world began to understand this as a human disease of colossal proportion with immense implications for world socioeconomic stability that struck men, women, children and heterosexuals as well as homosexuals. More than AZT was required to adequately treat infected people.
From 1995-1997, a host of new drugs appeared on the scene that were of two new types: non-nucleoside reverse transcriptase inhibitors and protease inhibitors. One of these first drugs, neviripine or Viramune, is now used extensively through out the world to treat particularly women, specifically pregnant women. Doctors in the United States began using different combinations of these drugs, called the “cocktail” in a regimen called Highly Active Anti Retroviral Therapy to treat HIV/AIDS. Different combinations were prescribed until the “right” combination yielded results. What happened was remarkable! Some people were literally brought back from the brink of death; this so-called “Lazurus Effect” of HAART is considered to be the cause of a 47% drop in the rate of deaths due to HIV in 1997. Infection with HIV was no longer a death sentence. The disease could be managed and give those who are ill another lease on life … a few more months and years or perhaps as we know now, many years. Hundreds of thousands of people returned to robust health.
However, Africa was left out in the cold. The drugs were not readily available to them. Also, HIV/AIDS was spreading rapidly throughout the world: Europe, India, Thailand and China. According to UNAIDS, as of 2006 India had 5.7 million people living with HIV – more than any other country in the world. International pressure began to build to bring what were prohibitively expensive treatments (even today, a month’s supply of a triple “cocktail” can climb to well over $2000.00 per month in the U.S.) to the disenfranchised: Women, children and the poor.
In late 2000 the Global Aids Program (GAP) was created to coordinate the CDC’s international HIV/AIDS programs. By 2002 the FDA approved a quick antibody test that used the blood from a pricked finger to test for HIV; this helped prevention measures advance. However, sadly, by 2005 over 1 million people were infected with HIV in the United States and over 25% did not know it.
Currently
As of 2010, there are 33.3 million people globally living with HIV, of whom 22.5 million are living in Sub-saharan Africa. However, according to UNAIDS in 2010, HIV rates have declined in Africa in 16 of 25 countries hardest hit due to changes in sexual behavior that includes having fewer sexual partners and condom use. Nevertheless, it is estimated that 68% of Sub-saharan is infected. In North America 1.5 million people are living with HIV, of these 70,000 are new infections; 14,000 people succumb to AIDS annually. AIDS is still a major killer in the United States; far well over half a million Americans have died of AIDS … this is the equivalent of the population of Las Vegas. People continue to die everyday. Infections continue at an alarming rate and the fight is not nearly over in the battle with AIDS. The Kaiser Family Foundation estimates that 56,000 people are newly infected each year … far higher than previous estimates. Men having sex with men (MSM) continues to be the primary avenue of infection for HIV. A sort of amnesia has set in; attention has faded, but the epidemic has not. For every person who begins HIV/AIDS treatment two to three others are newly infected. In 2008, 2.7 million people globally were newly infected, but only 42% of those who needed treatment actually received it. So, people continue to be infected and people continue to die.
Much work remains to be done. 2006 proved to be a watershed year for strides in prevention, treatment and research. New drugs came on the market that would contribute significantly to the treatment of HIV/AIDS. Before then, drug regimens were complicated; sometimes people had to take over 20 pills a day to stay healthy. Also, if one stopped taking their medication for even a short period of time, HIV would mutate in the body and the drugs would quickly become useless. In 2006 two companies, one in India the other in the U.S. produced a drug that was a combination cocktail of three drugs that could be taken in a single dose. This simplified regimen meant that those in poor countries and even those with the minimum of discipline to “take their meds” could successfully be treated.
Also in 2006, the NAACP confronted the AIDS crisis in the black community by opening its national convention by addressing the issue and having its leaders publicly take the OraQuick Rapid HIV test with a cotton swab to the mouth and get their results 20 minutes later. This demonstration is of great importance, for more than half of all people diagnosed in the U.S. are African-American and black people with AIDS are seven times more likely than white people to die of the disease. Moreover, at the XVI International AIDS Conference U.S. black leaders pledged to make efforts to increase access to care and treatment for black U.S. residents and called for an urgent campaign to increase HIV testing and awareness among blacks in the country. According to the Kaiser Family Foundation, 49% of new AIDS diagnoses occur among blacks, who represent 13% of the U.S. population. In addition, according to CDC, 46% of black men who have sex with men are living with HIV. Two-thirds of U.S. teenagers between ages 13 and 19 who are HIV-positive are black! These statistics continue to escalate. The number one killer of African-American women aged 25-34 is AIDS.
Additionally, with the advent of new medicines appearing, comes the likelihood of living longer. It is now estimated that by 2015 half of all HIV positive people in the U.S. will be 50 and older. People over 50 represented more than 28% of new HIV infections in 2007. In China, 15% of new infections in 2009 were people aged 50 and older, up from 1.6% in 2000. Now there are many HIV positive people over 50 who will also have to deal with the infirmities of age and the diseases that come with them; heart disease, for example. They will be taking the medications needed for these diseases and we, for one thing, do not know how these drugs will interact with the drugs they are taking for their HIV disease. With all the drugs taken by these people there are concerns regarding kidney and liver function. We just do not know what is going to happen in this uncharted territory. Studies are being done on issues of aging and HIV disease; however, there is a paucity of research information regarding living with HIV over the age of 50.
In July 2006 Bill Gates, the richest man in the world, gave in a package of 5 year grants $287,000,000.00 to fund research into the development of an HIV/AIDS vaccine to combat the 11,000 infections occurring every day and at the XVI Conference in Toronto he pledged $500 million dollars to fight AIDS, TB and malaria. Most recently, he spoke at the 2010, XVIII International AIDS Conference calling for health groups to adopt better business practices that “deliver more bang for the buck” and bring resources to the local level, rather than spending the money on meetings and travel.
AIDS researchers have indicated that a vaccine is still a long way off, but are cautiously optimistic; for example, Jay Levy, M.D. at the University of California San Francisco continues to do research into “long-term non-progressors”. These are people who for reasons yet unknown do not develop full blown AIDS. If the mechanism can be discovered in their bodies of how they keep the disease at bay, perhaps a vaccine could be developed. As of 2010, no vaccines are available for HIV/AIDS. In 2008, there was great excitement that has since calmed down over the so-called “Berliner patient” who was diagnosed with leukemia and to treat his cancer he received a stem cell transplant that acted like a kind of gene therapy. In the process of treating him, his HIV disappeared from his body. This gave hope that a cure was attainable. However, this case remains an anomaly and we are left with just hope.
Nevertheless, even if we find a “cure” for AIDS or develop a vaccine, infections continue to occur at an alarming rate. For this reason the focus of efforts, financial and otherwise continue to be on prevention; particularly among women. Worldwide, women are bearing the brunt of AIDS due to the promiscuity, oppression and domestic violence of men. For example, men with multiple partners are fueling the spread of HIV/AIDS among women in India, according to a study conducted by the National AIDS Control Organization, National Council of Applied Economic Research and the United Nations Development Program. For the study, titled “Gender Impact of HIV/AIDS in India,” researchers surveyed 2,068 households in Andhra Pradesh, Karnataka, Maharashtra, Manipur, Nagaland and Tamil Nadu — states with the highest HIV prevalence in India — in which HIV-positive people live. In addition, researchers interviewed 2,386 people living with HIV/AIDS and 6,224 households without any HIV-positive people. According to the study, women in India account for around two million, or 39%, of the nation’s estimated 5.2 million HIV positive people, and a large number of new HIV cases occur among monogamous women whose husbands or partners have multiple sex partners. Although the percentages remain the same, it is now estimated that only less than 3 million people have been infected. Again, these statistics tend to be problematical due to under reporting because of stigma and shame.
In 1998, China’s Ministry of Health forecast that by the year 2010, ten million of citizens would be living with HIV and nearly 80% of those living with HIV do not know it. China is now aggressively responding to the problem by addressing the social issues of IV drug use and promoting the use of condoms. HIV clinics have opened throughout the nation and even the President went public shaking the hands of those infected. China’s stalwart response seems to have curtailed the epidemic although statistics are unreliable. It is reported that less than 1 million people are living with HIV in 2010. However, stigma and politics are major problems in China and calls into question government statistics.
This situation of denial continues in Africa and in the United States, particularly among black women whose mates are “on the downlow”; that is, having sex with other men while maintaining heterosexual relationships. As mentioned previously, men having sex with men (MSM) continues to be the primary avenue of infection with HIV. Interestingly, it has been found that male circumcision reduces the probability of a male being infected by a female partner. But can men be educated to undergo the procedure? The answer is “yes”! In South Africa, with the largest number of HIV/AIDS cases in the world, circumcision continues to be used as an effective preventative for contracting HIV. However, the denial of men who have sex with other men (they claim that they do NOT have sex with other men) continues to exacerbate the problem of transmission.
Finally, Laurie Garret, perhaps most well known for her book, “The Coming Plague”, promoting “the big picture” and a long term response to the pandemic, opined if the XVI International AIDS Conference is to be recalled as a turning point of grand historic import, it should focus on how to integrate HIV/AIDS treatment and prevention programs into public health programs and should not be dominated by discussion of exclusive AIDS care and treatment. HIV/AIDS is a worldwide public health problem. This has, indeed, happened.
International efforts continue to focus on biology and pathogenesis of HIV, clinical research, treatment and care, emphasizing Universal Access to lifesaving drugs, social, behavioral and economic issues, policy and perhaps most importantly for an effective long term solution, epidemiology, prevention and prevention research. Prevention is the key to slowing the onslaught of HIV and it is proving to be effective. Currently, researchers are looking at using drugs to treat HIV as a preventative to getting HIV. One of these drugs that show promise in prevention is Truvada. In 2010, it was found that in people taking this drug consistently, it seems to do a very good job of preventing infection. Astonishing to many, even Pope Benedict the XVI, in very carefully qualified remarks, said that even though condom use is morally flawed by nature, it is the lesser of two evils when used by sex workers, both male and female. Prevention is paramount.
However, stigma, discrimination and lack of political will remain major obstacles to prevention. The world must talk openly and honestly without moral judgment, especially to the young people, about sex (both heterosexual and particularly homosexual behavior), abstention, condoms, being monogamous as well as IV drug use.
This Course
This newly updated (2011) course focuses on the HIV/AIDS pandemic in the United States. It begins with an historical overview that reports the experiences of the pioneers of HIV research and treatment in actual audio clips from interviews taken at the time. This is followed by basic information on transmission, infection, origin and the mechanism of how HIV causes AIDS. This information has changed little in the last 5 years. However, there have been some notable studies that give hope for a cure … but only a hope.
Statistics are important, but only tell part of the story. So, only basic statistics are offered, but mortality charts, surveillance reports and trends can be reviewed in the reference section, but are not required.
The essentials of testing, treatment and prevention are offered with a good deal of practical information needed for successful and effective counseling. This is followed by a discussion of the issues particular to the special populations of African-Americans, Hispanics (with some information in Spanish included) women and bisexuals, particularly addressing the recently acknowledged and continuing phenomenon of “men on the downlow” (MSM).
Legal issues address basic rights, personal disclosure and workplace matters. The counseling section features a 20 minute audio of a discussion of “client-centered counseling” that is particularly important in dealing with an infected person’s legal and ethical response to their condition. More can be learned in the course on HIV/AIDS and Ethics by Dr. Smith and Dr. Zur. Additionally, the counselor’s role, the practicalities of living with HIV/AIDS, mental health disorders, stigma, confidentiality, and end-of-life issues are discussed.
Finally, the President’s Plan for AIDS Relief 5 Year Strategy Report to Congress 2009-2010 is provided. Additionally, the UNAIDS document “Getting to Zero” the 2011 – 2015 Strategy is summarized with a link to the entire report.
The entire course is liberally referenced; especially useful is the Glossary of HIV/AIDS-Related Terms 5th Edition of over 160 pages and the AIDS Information Drug Database. These two references are essential for anyone treating or taking care of people with HIV/AIDS. Also, many links are provided for further inquiry and to keep the reader up-to-date. Not to be missed in the Resource Links is the PBS Frontline Documentary aired in early 2006: The Age of AIDS. If you have not seen this moving and dramatic documentary, it can be viewed in its totality online. Finally a brief comment and link to the evaluation report of the proceedings of the XVIII International AIDS Conference in Vienna, Austria in July 2010 is included.
This course has been updated (2011) since first appearing in 2006.
References
1. The San Francisco AIDS Oral History Series: The AIDS Epidemic in San Francisco: The Response of Community Physicians, 1981-1984, Volume III, Robert K. Bolan, M.D., Medicine, Activism, and the Gay Community in San Francisco, William F. Owen, Jr., M.D., AIDS Clinical Practice in the Private Sector. With an Introduction by Donald I. Abrams, M.D. Interviews Conducted by Sally Smith Hughes, Ph.D. in 1996. http://content.cdlib.org/xtf/view?docId=kt1489n6h0&doc.view=entire_text
2. AVERT.ORG: AVERT is an international HIV and AIDS charity based in the UK, with the aim of AVERTing HIV and AIDS. worldwide. http://www.avert.org/aafrica.htm
3. San Francisco Chronicle: July 16, 20 and 30, 2006.
4. http://www.kaisernetwork.org/aids2006/
5. http://www.unaids.org/GlobalReport/default.htm
6. The Global HIV/AIDS Epidemic Fact Sheet 2010, publication (#3030-15) is available on the Kaiser Family Foundation’s website at www.kff.org
7. Proceedings of the XVIII International AIDS Conference in Vienna, Austria in July 2010. http://www.aids2010.org/
8. amfar, The Foundation for AIDS Research, www.amfar.org