Today is the second day of the International AIDS Conference (IAC) and I am thrilled to be here. I have already met some amazing people and am looking forward to the next four days. One thing that has certainly stood out for me in the first few days is the number of times I have heard the phrase the “people upstairs.” These comments are referring to the researchers and scientists on the floors above the Global Village. This phrase is often said in a negative tone and makes me wonder why people living with HIV have such dislike and distaste for the “people upstairs”. Should we not be grateful? Do we not owe our lives to them? I would not have medications or access to care without the “people upstairs”. I am alive today because of the commitment of all the researchers who worked hard to develop and test new medications. None of us would be here without them. Policies do not get made without research. We need the data, we need the statistics, and we need improved outcomes in order to prove to the people in power what works and what doesn’t work. HIV programs do not get funded without data and research, we do not have agencies, interventions, medications, or access to health care without data and research. The researchers are not our enemy - they are loving, caring, people who have dedicated their lives to exploring, testing, and finding ways to help improve our lives. Researchers work long difficult hours. They do not do this for the glamour or fame. If you take the time to talk with these researchers you will understand they do this from their heart. They have hope and want to give us hope. Being a researcher is difficult. You have to be very smart, have a great deal of schooling, and be passionate and dedicated to what you are doing. There are many governing bodies that regulate every little thing a researcher does. Before researchers can start a project they must design the project and obtain approval for everything they do and I mean everything they do! It can take months and sometimes years for a project to get approved, then years of doing the project. Believe me it is not as simple as one might think. And trying to find funds to pay for these projects is complicated and stressful; research is very expensive but worth it. It takes a great deal of time, money, and personal sacrifice to complete a project. It takes a team of people and involves many regulatory bodies and mentors. I wish it were different. I wish research was an easy process, that we could just ask for funding and we would get it. As I stated earlier, in order to obtain the funding needed for medications and programs we must have the data to support it. The “people upstairs” truly want to help us. We do not like it when someone refers to us in a negative manner, or generalizes about us; let’s not do the same to others. I am a women living with HIV for 27 years and I hope to become one of those “people upstairs.” I start my doctoral program at the end of August. Please refer to me in kind - I have our best interest at heart.
Submitted on Jul 24, 2012 by
Lovinglife101
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The "people upstairs" are looked upon with disdain because the perception is one of general distrust and/or that they lack social skills to talk to the everyday "Joanne" on the street. Do I believe there are some researchers who may need a crash course in community engagement 101? YES!!! But equally as important I think we as a community need a research 101 course. With the hopes that it will be the beginning of and open dialogue between the two. Thank you for sharing your piece and remind us all about the harmful aspects of generalizing a group of people.
Thanks Dianne!
Thanks for the words of encouragement. You are right on both counts!
Yes you are right we need to look at the WHOLE picture, 1 plus 1 = 2....Great love for all who have made it possible for us who faced late stage HIV/AIDS and survived. I respect and am grateful every day I wake up for my life and they contributed to me haveing a second chance with the amazing research and developments in the medical/science world. Good luck with joining the team of life saving people upstairs!
Thank you for your sense of gratitude and awareness to the big picture. I too was at the IAC. I recall the use of those words and I never gave it a second thought. i also work in a research office and am constantly blown away by the amount of regulations and hoops we have to jump through. Because of this work, we're able to make this world a better place. Nothing wrong with that in my book. Good luck w/your academic career and please keep up the blog!