Finding The Cure To HIV/AIDS, Zach Ward

For my topic I chose "Finding the Cure to HIV/AIDS." This is a very broad topic with many different aspects. With the help of many educated persons around me, I was able to break down this topic into three distinct parts. The parts are different places that data collected travels. The first part was the place of data collection itself. For this I chose to interview a man who worked at a UNC site in Malawi collecting HIV/AIDS data. This data is then transferred to a research center such as Fred Hutchinson Cancer Research Center, the second part. The final part consisted of what happens in the lab and how the data assists searches for the vaccine and better treatment with the eventual goal of curing HIV/AIDS. Below are the interviews that I conducted (one for each "part"). Enjoy!




Finding the Cure to HIV/AIDS, Interview by Zach Ward of Innocent Mofolo, 6/13/10


Below is an interview I conducted via e-mail with Innocent Mofolo, the interview is verbatim. Innocent Mofolo lives and works in Lilongwe, Malawi. He works at the UNC site where both HIV positive and HIV negative patients can receive care. The Dzama community is located just outside of Lilongwe. He spends a large majority of his time caring for the community, but more specifically the orphans of the community.

1.) What is your role at the site in Malawi? I am a Program Manager for HIV prevention studies. I also oversee administration and genral operations of UNC Project

2.) Do you personally see patients, if you do how often? I don't personally see patients.

3.) How many people come into the clinic (2 people per day, 1 person per week, 10 people per day, etc.)?

Our establishment is a multi research and service provision organization with several activities going on at the same time. We provide services to more more 50 people per day. Some of these people are HIV positive and some are negative.

4.) Of these patients how many are orphans?

I am not sure of the exact number but some patients who recieve service from us are orphans

5.) What is your personal opinion on how resources dedicated to the HIV/AIDS epidemic should be used?

My opinion is that we should give prevention a huge amount of resources. The majority of our population (88%) are HIV negative so we should devise programs that helps them remain negative. Treament and care of those infected and affected should also receive priority to prolong life for those who are HIV positive. We should also set aside money to take care of orphans.

6.) Do you or someone in you office see the same patients multiple times?

Some patients who attend our clinic and research organization are followed up for a long time. Soma as long as 5 years.

7.) Could you describe the daily life of an orphan?

The life of an orpan is difficult in most cases. They dont have the parental love and guidance. Those who are lucky are taken care of by the extended members of their family witin theoir community. Other orphans have to live in orphanage which is an institution with set rule and regulations. Their life will depend those who help them and availability of funding to provide for their daily needs.


8.) Could you give the personal story of one specific orphan?

My wife grew up as an orphan. She was taken care of by her aunt and later on by her grandmother. She was lucky to have people to take care of her. Other orphans depend on non relatives to help them and have to live in an institution. It was hard fro her as she was to move from her aunt to her grand parents. She manged to finish high school but didnt have an opportunity to go to college.

9.) How is the Dzama community doing today?

The community is doing well. It receives a lot of support from the Scharp Community. We are now proving the orphans with milk to improve their nutrition status.

10.) Could you give the story of the Dzama community and its orphans?

DZAMA COMMUNITY PROJECT

BACKGROUND

Dzama Community Project is a self help initiative facilitated by UNC Project, Lilongwe. The community is located 30 kilometers from Lilongwe going towards Kamuzu International Airport. UNC Project does not have research activities in this community but it was identified as unique because of its large number of orphans.

UNC Project started working with the Dzama Community in 2003 with funding from UNC Project staff, UNC – Chapel Hill faculty and staff, Scharp Community Group in Seattle and other well wishers. The community takes part in all development activities that are done at Dzama village.

ACTIVITIES

The initiative started with identifying funds to pay for teachers who could engage the children with primary preparatory lessons using a make shift shack which is also used as a community church. This idea evolved into other development projects which included:

1) School Block – The project built a two roomed school block with burned bricks roofed with iron sheets. The community helped with molding the bricks.

2) Toilets – A restroom was build to meet the kid’s sanitation needs

3) Solar Electricity – The school block uses solar power for lighting

4) School Feeding Program – This is an ongoing program which provides corn, soya beans and peanut fortified porridge every day. This program helps to prevent malnutrition and the children are able to concentrate in their school work.

5) Goat Farming Project – Goats are kept within the community for breeding as an income generating activity. The proceeds help with paying for the school teachers, buying school supplies, and supplementing the feeding program.
5) School Books for Dzama – This program provides reading books for the students

7) Borehole – A borehole was sunk within the school premises. The clean water helps to reduce diarrhea diseases.

11.) What sort of information do you send back to Fred Hutchinson Cancer Research Center? We dont send information to this center

12.) Anything else you would like to add? Feel free to add (it will probably be very helpful)

Sorry due to my tight schedule while I am traveling, I cannot give you more information.







Finding the Cure to HIV/AIDS, Interview by Zach Ward of Marla Husnik, 6/14/10


Below is an interview that I conducted with Marla Husnik. The interview is word for word with no additions. Some, unimportant information has been removed to streamline the interview and its contents. Marla Husnik works at Fred Hutchinson Cancer Research Center as a statistician and has been very successful in her work.

1.) How do you manipulate the data you receive?

I use statistical software called SAS, R and other software packages that enable me to create variables that are collected from Case Report Forms (CRFs) for statistical analyses.

2.) Who do you get the data from?

We collect our data from clinical sites around the world who recruit participants that are eligible for the specific study that they are enrolled in. For example, I work on a study that examines the safety and acceptability of a Microbicide gel compared to a placebo. Women between the ages of 18-30 are enrolled in the study at 3 clinical sites located in San Juan, Puerto Rico, Pittsburgh, PA, and Tampa, Fl. They answer questions on CRFs (see above) and these responses are faxed to us and recorded in a database that transcribes the written information into datasets. These datasets are then corrected for any errors and are used for statistical analyses.

3.) Who do you give the data to?

I analyze the data collected from the participants as described above under 2) and summarize the results in into reports called Study Monitoring Reports (during the study to assess whether the study is working as it was planned in the protocol), Data Safety and Monitoring Reports (during the study to assess safety of the ppts. enrolled in the study), Final Study Reports (after the study is completed to report the conclusions of the study to our sponsoring agencies) and in manuscripts (for publication so other researchers are aware of what the results were) and other reports as needed.

4.) In your opinion, what is the most useful data to receive?

All data pertaining to the primary and secondary outcomes of a study (which depend on what phase clinical trial it is). For clinical trials the primary outcomes are as follows:
Phase I: Safety and acceptability (small sample size)
Phase II: Expanded safety and acceptability (larger sample size)
Phase III: Efficacy (usual has several thousand people or more
and tests the efficacy of the treatment (a drug, say) vs. placebo)
Phase IV: Effectiveness (post-marketing – which means after
the drug or product is on the market and is being used. How effective
is it?)

4.) Do you or your coworkers collaborate with other research centers? What kind of data is shared?

Yes, all over the world. We share data once we summarize it in the reports I mention above. The results pertain to the primary and secondary outcomes of the study. For Phase III trials this would HIV infection rates.

5.) Can you describe your general work day or the general work day of a coworker of yours?

Using statistical software to analyze data from various studies. Design randomization schemes for a clinical trial, communicate the findings to my colleagues. These are just a few examples of what I do.

6.) What is happening on the global level for combating HIV/AIDS?

Probably not enough.

7.) In the statistics you have worked with, have any studies proven to help solve the mystery that is HIV/AIDS?

I have worked in the area of HIV/AIDS prevention and we have found that condom use is most effective in preventing HIV acquisition in both gay men and women. Other products like Nevirapine, Tenophovir, etc. are being used as effective anti-retroviral to help people stay alive once they contract HIV. I have also done some work w/ other sexually transmitted diseases like HPV and HHV-8 which have been found to complicate illness in people with HIV, and make people without HIV more susceptible to contracting it.






Finding the Cure to HIV/AIDS, Interview by Zach Ward of Blake Wood and Wolfe Maykut, 6/14/10


Below is an interview I conducted with Blake Wood. He was very busy at the time and had very little time. The interview was conducted quickly with brief answers. Although the interview was short, plenty of important information was shared. To compensate for the brief answers, Wolfe Maykut was also interviewed. With the combination of the two, a complete interview has been conducted. The two interviews have been combined and summarized below.

1.) In your opinion, will allocating resources towards finding a vaccine to HIV/AIDS have better results in the future or will working on developing treatment be more beneficial? Why?

Advancing treatment will be more productive, I worked for four years trying to create a vaccine and we are still very far away. If a vaccine is ever found it will take a very long time. It is my opinion that developing more effective treatment is a better use of time and money.

2.) In the HIV/AIDS field, what do researchers working in the lab currently spend the majority of their time doing?

Currently, my group is working on developing more advanced vectors and adjuvantes. Vectors are thing like cow pox that has been genetically engineered to be harmless. Then, living cells are injected into the harmless cow pox. This is a way of transporting vaccines, the living cells are harmless within the cow pox so when they enter the body the immune system can react while still remaining safe. Adjuvantes are the things that sting your body. They initiate an immune response after you get a shot. The adjuvantes call your immune system to the spot.

3.) My research has shown that there are two types of treatment: those that attack the HIV itself and those that attack the opportunistic illnesses that are able to infect the body due to its weakened immune system. In your personal opinion, which is more important to target?

You have to suppress the virus. Fighting opportunistic illnesses is futile, the HIV/AIDS will eventually win.

4.) What are some of the major struggles encountered in trying to find a vaccine for HIV/AIDS?

The HIV virus mutates so as soon as a vaccine is developed for a strain of it, the HIV has changed. The virus appears to always be one step ahead.

5.) How often does VIDI as a whole collaborate with other research centers and what type of information is shared?

VIDI is constantly collaborating with other centers specifically with the National Institute of Health. In terms of types of information, VIDI shares adverse events, trial types, trial results are published in academic journals and statistical methodologies.

6.) As Fred Hutchinson Cancer Research Center grows and receives bigger grants, how much do politics and other administrative policies distract and slow the movement of resources or exchange of information? Or do they speed it up?

Both, for example, we once received a grant for new lab equipment that we had to turn down because this equipment then brought with it its own costs over time. Other grants allow us to use the money as we choose and are the most helpful.