HIV/AIDS Advocacy and Research 1

HIV/AIDS Advocacys Affects on Research

By Bertrand Briere Professor Masten Healthcare Rights and Responsibilities 24 August 20

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Introduction To understand the effects that changes in clinical research protocols have been, we need to understand a few things, first of all what AIDS is, how have protocols changed, who was instrumental in arguing for the changes. Healthcare is a complex system as it is, adding to it are the stigma of the AIDS virus as well as the changes that have come in HIV/AIDS therapies and research. Understanding the concepts of research, pros and cons, as well as the costs involved, help us understand the need for research as well as the hopes of finding a cure. Brief History of AIDS To get to present day standards and accomplishments, we need to first know a little history about the AIDS virus; I hope to dispel some of the myths about AIDS within the context of this paper. First off there needs to be clarification, the Human Immunodeficiency Virus (HIV) is the precursor to the Acquired Immune Deficiency Syndrome (AIDS), meaning that in order to be diagnosed with AIDS, you must have contracted HIV. HIV is the literal virus that causes the Immune Deficiency in AIDS cases, in 1981 the first identified HIV/AIDS cases were seen in gay men, men who have sex with men (MSM), leading scientist and doctors to call the disease Gay Related Immune Deficiency (GRID) (History of Aids, 2005). Since that time latest estimates of AIDS diagnoses were at 1,142,714, this included all 50 states (Centers for Disease Control, 11 August 2011). In the years spanning 2001-2004 there was a cumulative estimate of 944,306 diagnosed AIDS cases (Centers for Disease Control, 01 June 2010). As more and more HIV and AIDS cases that are diagnosed, research and development of vaccines and cures for HIV/AIDS is more important than ever.

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Research History When it comes to medical research in the United State of America, there are so many different factors that come into play. The first question that, I think, is the first on everyones mind is who is going to pay for the research? Then there are questions about ethics, regulatory issues, and how is the research regulated. In history physicians were able to perform experiments on their patients without any regulation on consequence. With that came many malformations, illnesses and death. It became apparent during World War II that there was a need for medical research to aid with the treatment of unknown illnesses, war time trauma for overseas soldiers, this created more funding and organization to research (National Institute of Health, 2005). During this time, Nazi doctors were experimenting on prisoners, which were more for punishment or torturous acts rather than scientific reason, causing American Judges to issue the Nuremberg Code. This code was a set of ten principles in medical experimentation with humans (National Institute of Health, 2005). In 1964 the Declaration of Helsinki was published allowing both therapeutic research, performed on ill patients with the intent of helping improve their heat, as well as non-therapeutic, which is performed on healthy patients with the intentions of understanding effects of medications and therapies (National Institute of Health, 2005). Current day Research Clinical trials and medical research is now regulated by the federal government, agencies such as the Department of Health and Human Services (DHHS) and the Food and Drug Administration (FDA) all have a say in who can, where can, and what kind of research can be done. These departments within the federal government are a small example of how far we have come from the days of doctors using people to experiment on. Hospitals and laboratories have to

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apply to the FDA and HHS for a status change to research facility, let us take a rural hospital in Nebraska; one of the doctors at this hospital has created a procedure that would allow a patient with diabetes to start producing their own insulin by implanting a certain stem cell into the patients pancreas. Before the doctor can perform any part of the procedure, from harvesting and growing stem cells, to preparing them for transplant, then ultimately using a human as a test subject, the doctor and the facility must apply to both the Department of Health and Human Service and the Food and Drug Administration, to research this new theory. He must prove that his research is beneficial to the patient group he is trying to heal. When drug companies come up with new drugs, they must present their finding to the FDA so that the FDA can investigate the safeness of the drug. This is all done before testing on human subjects is allowed. HIV/AIDS Research History When HIV/AIDS was first recognized in 1981, very little was known about the disease, first being associated with only homosexuals and is now been seen crossing all stereotypical boundaries. No longer is it confined to just men who have sex with men, it is seen in woman, intravenous drug users, people who are wealthy and live a heterosexual lifestyle. At first the demand to research the disease was nonexistent; it appeared that no one was really concerned about this disease because it only attacked a small group of men, who society deemed as perverts, or not worth caring about, society has always had distain for the homosexual, but this is a topic for a different paper.

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It wasnt until the death of film star Rock Hudson that brought HIV/AIDS in to the public sector, in 1984 Rock Hudson was the first American celebrity to tell the public he had AIDS, in 1985 his death put a face to the disease causing a chain reaction in the research for a cure (A&E Television Networks, 1996-2012). That same year, and for the next five years, there was a flurry of activity for AIDS research: 1985 Rock Hudson Dies of AIDS Congress give $70 million for AIDS research First International AIDS convention held in Atlanta Georgia Blood tests for HIV approved 1986 Surgeon General C. Everett Koop sends AIDS information to all U.S. households Scientist identify second type of HIV, calling the original HIV-1 and the new HIV-2 1987 FDA approve AZT, the first ever drug to prolong life by reducing the amount of virus 1988 The World Health Organization begins World AIDS Day to bring focus to the disease

(Pearson Education, 200-2012) After 1988 there was a lull in research activity, or any activity creating news worthy results, by the 1990s more and more institutions started getting involved in the research, major medical institution such as Harvard Institute of Medicine, and most notably the University of California San Francisco (UCSF). UCSF has actually created an entire institute to the research and development of AIDS cures and prevention. With these educational facilities creating a vast number of research facilities, they are able to get more federal funding as well as hold fundraisers to assist in raising funds for such controversial research.

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HIV/AIDS Advocacy As with all great movements in society, as more and more people began to assume they understood the ever changing disease, advocacy groups began assembling to ensure that the victims of the disease are not forgotten, and educate the public on how to prevent contracting the disease. I can only imagine the amount of fear that people had when they found out that someone they knew was gay or had contracted HIV. I, growing up around the time of the initial epidemic, remember times where a family friend came to visit during the holidays. He was given his own cup, utensils, or any other product that was shared, when he left my grandmother threw away all of the items that he used. I personally didnt understand why, this person I called my uncle, had to have separate things. It wasnt until his passing in 1993, that I learned of his illness, he died of an infection called Pneumocycstis Carinii a disease associated with the AIDS virus. I finally knew why he was treated so differently, it wasnt only my family who thought that the transmission of HIV was through sharing of utensils. At that time the entire country was not familiar with the disease, its life cycle, and its route of transmission. This was an important event in my life because I hadnt heard of the disease before, which is when I became aware of AIDS advocacy groups. Advocacy groups in general, are groups of people that come together to teach and sometimes fight for a cause that they believe in. In the beginning there were few, one of the oldest is the Interior AIDS Association (IAA), this group was started in 1988 in Fairbanks Alaska (Interior AIDS Association, 2004), since then many more have come about advocating for HIV research funding and educating the public. As AIDS spreads across the globe it is more important than ever for there to be a fighting force, a crusade if you will, of passionate people continuing to fight for continued research. As time goes on and researchers come up with no or

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little results in finding a cure for HIV or medications that will help the sick bet better, not just live longer, advocacy groups are changing strategy. One of the key factors in this change is the discovery of a drug resistant strain of HIV in 2000, with the fear of the virus mutating to the extreme of resisting any known drugs, it is my belief that people now look at this disease the same way as they do cancer. Here is a disease that we will never find a cure for, but wont quit trying, therefore we must educate people on how to prevent the disease, provide resources for them to receive treatment once they get the disease. Looking through the different advocacy programs, looking at what the activists are involved with; it seems the focus is education. I personally have volunteered for several HIV/AIDS advocacy groups and the primary focus has been education, there are many that are involved in lobbying the government to continue funding to HIV research penning amicus briefs in court cases, writing and having meeting with government officials to continue the research funding. But truly education is key, educate the young people that wearing a condom during sex isnt just about contraceptive, its also about transmitting sexually transmitted diseases (STD) like HIV. Drug users should not share needles, anything coming in contact with blood should be discarded, and it was the HIV advocates working with the American Diabetes Association, who implemented a needle disposal program that has swept the nation. In certain areas, bathrooms and other public spaces have red biohazard needle boxes that allow for easy discrete needle disposal. Some hospitals have set up needle box exchange programs; these are places that you can exchange a used needle box for a new empty one. While it is a program that was indented for diabetics to have easy disposal of their used needle, HIV advocates have jumped on board to advocate needle safety in preventing HIV/AIDS.

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One of the biggest hurdle in HIV research is funding, funding comes from many sources one being charitable fundraising, however the majority of funding comes from the federal government. Since the time of President Ronald Ragan, the federal government has lowered and rose funding for HIV research, the latest debacle in this funding was when current President Obama decided to cut funding. In a report on July 22, 2012 President Obama stated that he would cut funding to the global AIDS program to help reduce the budget, this is announcement upset many of the advocacy groups (Bloomberg, 2012). This produced an uproar amongst advocacy groups around the world, no matter how little or how great the cutbacks would be, there are some programs that people are very passionate about keeping, with current advancements showing promising results, such as the one a day pill given to patients that have the disease and caught early on, preventing them from spreading the disease. There are also vaccines that are in their early stages of human testing, leaving everyone more hopeful than ever that a cure is within reach. By the President of the United States, coming out and stating his position, he took a risk on his stance with the world AIDS population. The future of Research and Advocacy While it is the hope of everyone to see this disease eradicated, such as we did with small pox and polio, it will be a long time coming. Advocates for research continue to put pressure on the federal government to provide funding to research entities, while at the same time pressure mounts against pharmaceutical companies to not give up on their quest for cheaper medications and hopefully a cure. In the near future more vaccines will be created, more medications will be created and more education will be presented.

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With out our advocacy groups both big and small, the fight against the disease will be lost. Small community organizations such as the Nantucket AIDS Network and Louisiana Aids Alliance, HIV patients who lose their insurance will have nowhere to turn. Education about safe sex practices, needle sharing, and counseling programs will go away leaving those in need without. Advocacy is needed for those without a voice, the resources need to be made available and the research needs to continue. Conclusion In conclusion, research is a timely process, it never happens overnight. As time goes on research needs and will continue to find a cure for HIV/AIDS. Activists have a key role in ensuring that funding is always made available, they are an important group of people who speak for those who cant. While my research shows now direct influence on the protocols and policies of AIDS research, it does show the importance of the presence and voice of the advocate. There will one day be a cure, maybe not my lifetime, but there will be a cure! In the meantime many lives have been and will be lost to a virus that is ever changing. I stand with the advocates and call for the research to continue, so that all of those who have come before us have not died in vain. We should remember all who have lost the battle to a miserable disease.

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Works Cited 1. History of AIDS, Endeavoring to raise AIDS awareness through understanding, 2005, retrieved 19 August 2012, http://fohn.net/history-of-aids/ 2. Centers for Disease Control, Basic Statistics, 11 August 2011, retrieved 19 August 2012, http://www.cdc.gov/hiv/topics/surveillance/basic.htm 3. Centers for Disease Control, estimated AIDS cases 2001-2004, 01 June 2010, retrieved 19 August 2012, http://www.cdc.gov/hiv/surveillance/resources/reports/2004report/pdf/table3.pdf 4. National Institute of Health, American Clinical and Climatological Association, Regulating Research with Human Subjects-Is it Broken?, 2005, retrieved 21 August 2012, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1473133/ 5. A&E Television Networks, the History Channel, 1996-2012, retrieved on 21 August 2012, http://www.history.com/this-day-in-history/hollywood-icon-rock-hudson-dies-ofaids 6. Pearson Eaducation, Info Please, 2000-20012, retrieved 22 August 2012, http://www.infoplease.com/spot/aidstimeline1.html 7. Interior AIDS Association, About Us, 2004, retrieved 22 August 2012, http://www.interioraids.org/about.html 8. Bloomberg, 22 July 2012, President Cuts Funding to Global AIDS Program, Activist Upset, retrieved 23 August 2012, http://wraltechwire.com/business/tech_wire/biotech/story/11342058/