Clarifications
It was your love that got me by
Drug Guide kudos
Fighting the numbers
Clarifications
In the profile of Martell Randolph (“Rare Virus, Rare Strength”) which appeared in the March/April issue of Positively Aware, Ms. Randolph’s first name was spelled incorrectly. In addition, Martell was not officially diagnosed with HIV until 2000, and the status of the gentleman from West Africa that she mentioned dating while living in Europe is unknown. Lastly, Martell is a member of the AIDS Treatment Activists Coalition (ATAC), not the AIDS Clinical Trials Group (ACTG).
In the profile of Tony Mills, M.D. (“Tony Mills, MD.—International Dr. Leather”), the first sentence at the beginning of column two was cut off. It should read, “Mills is open about his own status with his patients and has been since the mid-nineties.”
Positively Aware apologizes for the oversights.
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It was your love that got me by
I read with great interest the article from Thom Hudson [see Editor’s Note: Why We Care, March/April]. Being an HIV counselor for the past 14 years, I was touched by Thom’s personal saga. I have lost several friends (clients) over the years I have been doing this work. It is never easy.
People often ask how I can do this work day after day, and I respond, how can I not do it? It has become my life passion. This is not just a job to me, but a way for me to reach out to the HIV community in a positive way, being there when clients feel they have nowhere else to go. In the 32 years I have worked in the field of medicine, I have never held a job as rewarding as this. I use your magazine with my clients and make sure they always have a copy when they leave.
Thanks on behalf of me and my clients for a great magazine, and keep up the great work.
Diane Attanasco, Flemington, New Jersey
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Drug Guide kudos
Bravo for your 12th Annual HIV Drug Guide (January/February)! I have been an HIV social worker for four years and found the issue extremely easy to read for myself and my clients. I even gave a copy of it to the physicians in the clinic! Each medication was explained by your staff, Dr. Gallant and Martin Delaney in a way that most people can understand. The general information on each of the drugs is so helpful—I keep it in my top drawer to pull out when I forget the generic name or the dosage of a medication. I loved the medication class color coding, the Drug Interactions Chart, the Side Effects Chart, and especially the “centerfold” Drug Chart. It is the only one I have gotten with all the new medications. Thank you, and keep up the amazing work!
Amy in Michigan, via the Internet
[The following was received via voicemail]: I’m a case manager out in Joliet, and this is just a call to tell you thank you, thank you, thank you, for the great article, the great HIV Drug Guide, and the picture chart. As I was putting it up in my office, I noticed it’s horizontal, instead of vertical this year. It’s part of my office, and it’s a great teaching method for working with clients so they can see the pills they are taking and we can talk about them. I just want you to know that your hard work is appreciated by one, lowly case manager out in Joliet. Keep up the good work, your agency is just a great agency and serves enormous numbers of people…keep up the good work!
Name withheld, Joliet, Illinois
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Fighting the numbers
About a year and a half ago, I was working full time and finally decided to pursue my goal of becoming a nurse practitioner. For years I wanted to specialize in working with individuals testing HIV-positive. I wanted to become a specialist in infectious diseases. As I was only a certified nursing assistant, I knew my journey would be a long one with lots of work and dedication to my education. Shortly after starting school, I found a job at a hospital with better hours and better pay, which was perfect with the hours of studying I would have to do to achieve my goal. Not a month after beginning work at the hospital, I started to feel tired, worn out. A pre-employment physical with blood work, required by the hospital, showed low counts of red blood cells, white blood cells, and platelets. I immediately thought that I was anemic, which would explain why I was so tired. After all, I was severely anemic as a young child. It was either that or I had to slow down on work and school.
In any case, the employee health nurse advised me to follow up with my regular doctor. I did. I was sent to a hematologist at the Mayo Clinic. I had every test known to man run on me. Everything from what must have been a gallon of blood drawn to a bone marrow biopsy (ouch!). A couple of weeks later, I followed up with the hematologist for the results. As he read them off, I was feeling relieved yet hopeless as to why I was so tired. The last test was an HIV test. Thinking nothing of it, since I hadn’t participated in any high-risk behavior, I said to the doctor that it should be negative. It wasn’t. I was stunned, speechless, emotionless. How was I going to tell my partner of three and a half years, who was sitting in the waiting room, that I tested positive? I was in complete shock. The doctor went on about numbers. My T-cell count was 2, my viral load was more than 100,000. What did this mean? Was I about to die? The doctor told me that these numbers classify me as having AIDS. That didn’t help. What did help was that he told me that because I hadn’t had any of the opportunistic infections, I could change that status to just being HIV-positive. [Editor’s note: this is mistaken information. Possibly the doctor said therapy could bring T-cells above the level of an AIDS diagnosis, which is 200.]
That was just what I needed to hear. From that instant, I decided that there is no way in hell I’m giving up without one hell of a fight. So I did. Aggressive therapy with oral meds helped to raise me to 72 T-cells and the viral load came down low. Then I found a good family doctor who was very up-to-date on the treatment of HIV. He immediately recommended Fuzeon. It required giving myself injections, but that didn’t bother me. What did bother me was that my insurance denied the $2,500-a-month medication. My doctor, however, had the resources to supply me with the monthly Fuzeon kit. I’ve been on Fuzeon for just over a year and my T-cells have gone from 74 to over 350 and holding. My doctor wanted to take me off Fuzeon and put me on the oral medication mavaviroc (Selzentry). We couldn’t do that, however, because I have an undetectable viral load and you have to have one that’s at least 1,000 so that a Trofile test can be done for maraviroc. So for now we’re putting that on the back burner.
These days I feel fantastic. I’ve been doing super in school, holding at least a 3.7 GPA. I expect to be starting the nursing program in just a year (because of a waiting list), and then I’ll soon be well on my way to one day finding a cure. I want to tell readers to not let the numbers determine your future; let your heart determine your future. Where there’s a glimmer of hope, that is the doorway giving you permission to fight like hell and not give in to this disease. Thanks for being there. If it wasn’t for the first issue of Positively Aware I picked up in the doctor’s office, I might not have gotten the extra boost I needed at times. I hope to someday read about new breakthroughs in HIV in Positively Aware.
Name withheld, Arizona
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