Interview Reflection - Mary

1. Describe your feelings about or response to the interview.

    Dr. Lee was a incredible source of knowledge and understanding of HIV/AIDS and was easy to engage in conversation. She could have answered questions and talked about the subject for many hours more if there was time and I would have been more than willing to stay and listen!  I was impressed with Dr. Lee's compassion that provides a foundation for all the work she does with patients who are uninsured and otherwise denied health care.  In addition, she told us emotionally moving stories about the social stigma HIV/AIDS patients fear most when they are diagnosed with the disease.  Overall, the interview help to connect the science of the disease with the harsh reality it has for people who are living with HIV/AIDS.

2. What changes occurred for you as a result of your interview?

    Some of my past research projects have studied HIV/AIDS and the complexity of preventing and treating the disease.  Countries that are most endemic to HIV/AIDS work to provide prevention education and treatment for it whenever treatments can be made accessible.  I usually first think of individuals in African countries who suffer from HIV/AIDS since the disease affects a much higher percentage of people there and treatment is not as easily administered.  This interview helped to remind me of the individuals who have AIDS in the United States- some who also do not have access to treatment- and the social stigma they struggle with.

3. Did anything about the interview disturb you?

     I was bothered by the stigma that is was (and is still) associated with HIV/AIDS.  It was saddening to hear some of the stories Dr. Lee shared about people who begged to have something other than "HIV/AIDS" written on the death certificate of family members who had died.  Dr. Lee explained that at first, most doctors were not willing to work with or treat patients because they wanted to protect themselves and their families from the disease.  While I can understand the physicians' desires to protect their own families, it is disheartening to hear the numbers of HIV/AIDS patients who died because no one cared enough to help.  The number of individuals who came to the KC clinic for treatment of HIV/AIDS during the first years, many of who died, is unreal.  Unfortunately, Dr. Lee said the frequency of HIV/AIDS cases are increasing and more people come each day with the disease. 

    Additionally, when Dr. Lee explained the crossover of SIV in chimpanzees to HIV in humans, she stated that crossovers are still occurring today.  Unfortunately, this means there could be many more complex diseases that mutate into the human genome and cause epidemics such as HIV/AIDS, since eating bush-meat is still common in some African cultures.  There is a great amount of research going into the treatment of all strains of HIV/AIDS.  Despite these efforts, Dr. Lee expressed at the end of the interview that she believes a cure for HIV/AIDS is a very long way off meaning that many more lives are still to be lost to this unrelenting disease.

4. Describe the connections you found between the interview and your research/classwork.

     During the interview Dr. Lee showed us a slideshow presentation she created to explain the evolution of HIV/AIDS.  The slides provided a visual representation of the action of the CCR5 receptor when the HIV virus enters the body, similar to the diagrams illustrated in our classroom text.  Also, in our class lectures we discussed the presence of the CCR5 delta 32 allele in only some populations and explained the genetics behind this evolution.  Dr. Lee made many references to this evolution and presented it as a crux of the problem of treating and finding a cure for HIV/AIDS .

Jay's Reflection of Interview

1. Describe your feelings about or response to the interview.

 Dr. Lee was very comfortable with talking to us. She shared very detailed information about her experience with HIV. Her stories are what made the interview amazing. Her vast source of knowledge on HIV gave us what we needed for the interview. 

2.  What changes occurred for you as a result of your interview?

 It was very interesting to hear the story of how Kansas City first encountered HIV. Dr. Lee established a clinic for the uninsured and low income residents of Kansas City. But when she started working with HIV patients when no other doctor would, her free clinics became a center for HIV/AIDS patients. I always have heard how much effort goes into prevention and research of HIV/AIDS but seeing it first had changed my attitude towards it. I get this feeling that there is always so much more that can be done or needs to be done to fight the disease

3. Did anything about the interview disturb you?

The interview was very professional. Some of the stories that Dr. Lee told us were sad. She said on average in the late 1980s and early 1990s they would have at least 200 deaths related to HIV/AIDS. Overall though nothing about interacting with Dr. Lee was disturbing. 

4.  Describe the connections you found between the interview and your research & classwork.

 There were many similarities in the history of HIV/AIDS. We discussed how it was passed on to humans from chimpanzees through the use of bush meat. We then touched on some drugs and discussed AZT as being very effective early on. We found out that AZT works for two years before resistance develops. The final aspect of the interview that was similar was the evolution of HIV. It is so difficult to build a treatment for the disease because of its high mutation rate.

                                                     

Interview Reflections - Kelsey Bennett

1. Describe your feelings about or response to the interview.

I loved doing this interview! It was totally worth the wait. Dr. Lee is one of the most respected doctors in the country in regards to HIV/AIDS. I was so impressed with her knowledge and experience with the HIV. She had crazy stories about her work - some good and some horrific. Dr. Lee was very laid back, honest, and real when interviewed. The interview flowed more like a conversation than anything else. She answered questions thoroughly and even provided answers to questions we had not yet asked. She was super talkative and passionate about her work. It was interesting to hear what it was like working when HIV was first discovered and first being treated. In the early years of HIV, the disease and treatments for it were a complete mystery. Since then, we have gained a lot of useful knowledge. I left thinking about how cool her job was and I wish I could have stayed longer.

2. What changes occurred for you as a result of your interview?

I have always been very sympathetic to people with HIV/AIDS since I know people with the virus. I felt they were unfairly discriminated against because of the stigmas that go along with the disease. People frequently think if a person has AIDS he or she is homosexual, a prostitute, or a drug user. People don’t want to tell others what they have because of these stereotypes. AIDS is also frequently the target of many jokes and sarcastic one-liners. I know that much comes from lack of proper knowledge regarding the virus. In high school, I singlehandedly organized recognizing World AIDS Day each year at my school with the supervision of the Campus Minister. My goal was to educate the girls in my school. That week, the Campus Minister told me that she, the Morality teacher, and the science teachers had all gotten tons of questions about HIV/AIDS because of World AIDS day. Those questions stimulated discussions in class. Everyone has a cause that he or she is passionate about, and HIV/AIDS is mine. The change that occurred for me is slight. I now see that the discrimination and stigma associated with HIV is nothing close to what it was in the past in the beginnings of the virus. I could not believe some of the stories Dr. Lee told us. I am grateful that the things that happened in the past cannot legally occur now. While there is a long way to go, I find comfort knowing how far people have come in accepting those with HIV/AIDS.

3. Did anything about the interview disturb you?

During this interview, I don’t think I was disturbed so much as saddened by the disbelieving stories. It is amazing to hear about the panic that swept through not only the medical field, but the country during the 1980’s. People who were HIV positive were evicted from houses and apartments. They lost their jobs, and any health insurance that was through their employer. Insurance companies didn’t want to spend the time or money to cover people with this new disease. Sometimes even after death, life insurance companies would take away the insurance money from family members if the cause of death was AIDS. For these reasons, people refused to get a diagnosis and treatment. Dr. Lee mentioned that she had to make house calls many times. When she arrived, the patients had already died, but people didn’t want coroners to realize the patient was HIV positive. Many also begged her to change the cause of death on the death certificate. Dr. Lee never did, though I imagine it had to have been tough to see and hear people beg. Another awful story we heard also showed the fear that HIV brought about. One man at the clinic had a mass in his chest that needed a biopsy. This man also happened to have AIDS. The only doctor at the clinic who was able to perform the biopsy procedure refused because the man had AIDS. The doctor did not want to endanger himself or his family for a stranger. He did not write down this reason or anything that could compromise his position as a doctor, but found loopholes to refuse treatment. The man ended up dying shortly after. It is interesting to hear about people’s ethics when put into situations like this one. Like I said before, I am happy that these situations legally cannot happen today.  

4. Describe the connections you found between the interview and your research & classwork.

The most obvious connection was the brief discussion of the CCR5 receptor. She reiterated what we talked about in class (about the receptor itself and about immunity that can result from a homozygous recessive individual). We also touched on how chimpanzees are genetically similar to humans, which helped the virus cross over so easily. Monkeys are all very genetically similar, and the virus also crossed to other species several other times. Also, just like SIV changed to HIV, there have been other viruses that have started to spread via bush meat. One example is the Simian Foamy Virus, which has already crossed to a couple humans in Africa. She also told us that different races are more susceptible to HIV and more likely to be missing the CCR5 receptor. Evolutionarily, people of different races differ from each other, and it would be interesting to see what it is that makes one race less likely to get the virus. 

Interview with an HIV/AIDS Specialist

To gain a further understanding of HIV/AIDS, we chose to interview Dr. Sharon Lee.  Dr. Lee is a general family practitioner who works at Family Health Care, a free clinic on Southwest Blvd. in Kansas City, Missouri.  Dr. Lee started this free health clinic after realizing the need of free medical services for the uninsured, and began working with HIV/AIDS patients in 1984.  She has gained a deep understanding of the evolution of the disease, the role of research in HIV/AIDS treatments, as well as the changing societal and cultural perspectives of the disease.  Her experience and vast amount of knowledge about this disease made her an excellent choice of reference for our project.

Dr. Lee's work with AIDS patients began in 1984, three years after the CDC first discovered it.  At this time it was not diagnosed as AIDS because it was an emerging disease.  The CDC noticed clusters of pneumonia and Kaposi's sarcoma in younger populations.  This was unusual because the diseases typically appeared in elderly populations.  At first, the CDC only characterized it as an infectious disease with a suspicion that is was sexually transmitted.  The only way to diagnose the disease was to measure the T-cell count.  In 1983, the CDC began calling it an AIDS related complex (ARC) and it was still not identified in many populations.  In fact, Dr. Lee did not believe that she would encounter patients with this disease.  One year later, her expectations did not hold true, and a patient with this disease entered the clinic. 

There were many unknowns about this disease especially how it was transmitted.  Many doctors were afraid to treat these patients because they wanted to protect themselves and their families from this disease.  Dr. Lee's free clinic became the center for HIV/AIDS patients in Kansas City because many of these patients had lost their jobs, insurance, and homes because of the stigma that was associated with this new disease.  In her first few years of working with the disease, there were over 200 deaths per year at the Kansas City clinic alone, and many of these patients died without the official HIV/AIDS diagnosis because of the fear of cultural stigma that would remain with their surviving families.  Most of the patients admitted to the clinic died within the first 6 months due to the lack of research and treatments available for this disease.

After extensive research for almost a decade, Dr. Lee states, "it became clear that there were medications that can control [AIDS]." In 1996, protease inhibitors were tested as treatments for the disease and were very successful. Prior to that, nucleosides, specifically AZT worked like a "miracle drug" and helped cure Kaposi's Sarcoma. While these two treatments were effective, the patients developed resistance after approximately one or two years. To prevent resistance, doctors started to prescribe cocktails - these were a combination of two or more drugs. These cocktails increased the patients' chances of survival. The reason HIV/AIDS was able to become resistant to drugs was because the occurrence of random mutations in the genome. Resistance developed for many reasons. First, the virus replicates at an alarmingly fast rate, and it does not have DNA polymerase that corrects mismatched pairings of DNA bases.

Bush Meat

http://bushwarriors.org/2011/06/13/is-having-your-chimp-and-eating-it-too-leading-to-%E2%80%98empty-forest-syndrome%E2%80%99/

According to Dr. Lee, "it is very interesting because the HIV we know originated in chimpanzees and crossed over to humans a long time ago. Non-human primates in Africa had a similar virus called Simian Immunodeficiency Virus (SIV) that is common and nonpathogenic in these non-human primates. Through the use of bush meat in Cameroon, the SIV crossed over to humans. Since humans and chimpanzees share 98.5% of DNA, the virus quickly adapted into a form that was pathogenic to humans. It is estimated that since 1930, SIV has crossed over eleven different times. Even today, since bush meat is still consumed, there is potential for other viruses to cross over into humans similarly to the cross over of SIV. Interestingly however,  as of today there is a percentage in the human population that is genetically resistant to the HIV virus.

Through genetic and sociological studies, it has been found that humans in Northern Europe had a gene mutation at the CCR5 allele. For HIV to enter a T-cell, it first binds to a surface receptor called CD4. Then, the CD4 pulls the virus down which allows the virus to bind to the CCR5 receptor. The second binding initiates fusion of the virus to the cell. Some humans have a mutated CCR5 gene that produces a receptor which HIV is unable to bind to. Since this is a recessive trait, individuals that have both alleles with the mutation are effectively immune to HIV, and individuals who are heterozygotes have a partial resistance slowing HIV progression.

When we asked Dr. Lee if it is more important to support the efforts of HIV prevention or support the research of the virus to develop a cure, she said she had no effective way of answering the question. She said that, "it is possible to do things on the preventative side. I think a cure is a very long ways off." She continued by saying that the best preventative measure is to get humans to change behavior (using condoms, being aware and educated about the disease itself), but she did recognize the difficulty of that endeavor.

Dr. Lee told us many stories about her experiences. While we could not include all of them in our description, we have gained new knowledge about HIV from many perspectives. Dr. Lee has done many talks around the United States on this topic and it was a privilege to have conducted this interview with her.