Privileged Gardner
By Deneen Robinson
One of the challenges in the last couple of years has been the looming concern that people with HIV are ageing out of treatment options. What does that mean? Well as people are living longer with HIV and developing resistance to the current drugs, there is concern that treatment options will cease. The news from the International AIDS Society Conference on HIV Pathogenesis, Treatment and Prevention certainly relieves some of my fears about treating HIV. I am a highly treatment-experienced patient. I am fortunate to have reached this point after more than 10 years of being on treatment. I know others who have reached the point of limited or no treatment options in a much shorter time. The biannual conference was held in Sydney, Australia and is dedicated to providing information on global HIV disease and prevention issues. I can tell you that reading through the information from this year’s conference, I was so excited. This is the first time in quite a while that a conference has yielded so much “new” news. I just want to jump up and down and scream. YEAH! I can plan. There are options ahead. I know I am not the only one who feels like this. One of the biggest challenges living with HIV is the dreaded conversation with the healthcare provider about switching regimens. And perhaps even more of a dread is the conversation when the doctor says, “We need to keep you on this regimen while we wait for something else because there are not drugs that you have not already exposed to your virus.” This conversation is only necessary because the drugs used to treat HIV are not a cure and the virus eventually figures out how to work in the presence of the medications. This process is called resistance. Mutations – changes in the way the virus looks- develop and the medications can no longer successfully control the virus. Also, while we have more than 20 drugs to treat HIV, there are not 20 treatment regimens. With the current options, one may have three regimens that are unique. It is one of the many challenges of successfully managing HIV. There were three categories of information discussed at this meeting. New drugs on the horizon for treatment experienced patients. A. Selzentry – maraviroc is a CCR5 inhibitor. This drug belongs to a new class called Entry Inhibitors. On Aug. 9, maraviroc was FDA approved as a treatment option for treatment experienced patients. At present, naïve patients cannot use this drug. Entry Inhibitors stop HIV from entering the CD4 cell. There are challenges because physicians have to administer a specialized test to determine if this drug is going to work in the patient. This test is expensive – about $2,000 per patient. Also, we do not have any long-term data on the development of resistance since this is a new class of drugs. The promise for patients that the development of this drug does ensure that CCR5’s can be created and this drug holds immediate promise because there is no risk of cross-resistance to current treatments. B. Rilpivirine (www.tibotec.com) - TMC-278- data was presented at IAS about the NNRTI that showed it may have an edge over Sustiva. This drug is currently in clinical trials and is looking to begin large Phase III trials this fall. The 96-week study – C204- comparing three once-daily doses of rilpivirine to Sustiva in combination with either Combivir or Truvada showed that rilpivirine demonstrated minimal changes in lipids vs. Sustiva. C. Etravirine -TMC-125 – Etravirine is an experimental drug used to treat HIV. This drug is a NNRTI – non-nucleoside reverse transcriptase inhibitor. It is designed to work when HIV has become resistant to the currently available NNRTI’s. It is exciting because this drug gives patients options in the NNRTI class once they have become resistant to Sustiva or Viramune. D. Isentress -- raltegravir - MK0518 – Isentress is an experimental drug being developed to treat HIV. It is in a new class called integrase inhibitors. Merck & Company is developing it. The drug is before the FDA and is expected to be approved by the end of October 2007. New treatment tools to manage HIV infected patients • Scientist have discovered the gene HLA-B*5701 that can predict the abacavir Hypersensitivity Reaction (AHR) to abacavir (www.glaxosmithkline.com). In a clinical trial performed by Dr. Simon Mallal of the Royal Perth Hospital in Perth, Australia. – PREDICT – 1 on 1, 956 European HIV+ patients looking to use abacavir as part of their therapy, the physicians found that 100% of those that were administered the test did not have the reaction. Abacavir is a nucleoside used to treat HIV. Finding this gene is important because AHR can be fatal reaction. Secondly, determining whether someone will have the reaction saves a drug that can be used by someone living with HIV. For more information on materials presented at IAS, please visit www.ias2007.org. I hope you, like me, are pleased with the news from this meeting. Knowing that there are future options helps make my commitment to continue planting seeds all the more possible. August 30, 2007 Ms. Robinson, First, I want to tell you thanks for having the courage to share your story with others about being positive. Like you I am too, found out May 9, 2005. That is a day I will never forget. I read your article in the Sentinel, and that is what made me want to share my story with you. See, I've been afraid to tell anyone, besides a few family members about my being positive, and with me being in prison makes the situation that much harder to deal with. Yes, I am in prison, been down 19 years now. I am doing a 30-year sentence for drugs, and to be positive in prison is more difficult to deal with than you would expect because you cannot share this with anyone, or people will treat you differently. People think that the only way you can become positive is by having sex with other men and that is not true. I have been down 19 years and have never even thought about it once. I contracted it from using drugs and I did not start that until I have been down about 15 years. The situation started taking its toll on me and I used the drugs as a way to cope, not realizing that I was killing myself in the process. Yet, that is no excuse to try to justify my mistake. It is just the best answer I can give at this moment. How I found out was I kept getting these ear infections that kept coming back and then pneumonia. At first the nurse thought I was just trying to get out of work, or was just on some bullsh--, but then I had her check my medical life and she noticed that I hadn't been sick the entire time I had been in prison. That is when she asked me if I have been involved in any kind of risky behaviors like sex or drug use and I told her yes ? to the drug use. I told her that within the last couple of years I started to use to deal with my situation. That is when she asked me if I would take the test, which I did. The rest is what I have to deal with because of my stupidity. I got very sick in 2003 and the prison had to put me in a regular hospital ? not a prison hospital. Like you, I was in there for a month, and for two of those weeks I was in a coma. In addition, I had a stroke, which left me with numbness in my feet. I had never felt so devastated in my life. For a while I was ready to die so I would not have to face this, but because I had taken care of my body all my life, my health started working for me as well as the medications. I also could not let my family see me give up, not when they have been there for me through these last 19 years. So, with that, my will to live has become greater than ever and to die in her would be an embarrassment to me as well as my family, and to any other person that has to live with this. Life has not stopped, it is just the beginning and I expect to have many years to come. I hope that one day, they will find a cure to help me and you and the others just like us. Thank you, Ms. Robinson for inspiring me to want to tell my story because I have been wanting to for so very long. Respectfully and sincerely, *BlackAIDS.org is withholding the name of this individual who is in prison in California. Deneen Robinson is the Privileged Gardner. She is the owner of the Savant Consulting Group. Savant Consulting Group provides educational presentations, motivational speaking, staff in-services, curriculum development and other services as needed by the client. She lives in Dallas, Texas with her family. Deneen volunteers and acts as a minister at her local church. She can be reached via email at