Great July+August issue of POSITIVELY AWARE! I was hoping to add a detail or two to “Hepatitis C Prevention for People Who Inject Drugs” by Andrew Reynolds. On page 44, in the paragraph under “Set-up your own personal rules…and disposing of syringes,” the reader might also consider using empty liquid laundry detergent bottles for syringe/needle disposal when the red sharps boxes are not accessible. Here at the Needle Exchange Program of Asheville (NEPA, est. 1994), we go to local laundromats and collect the hard-plastic bottles in order to make them available to our participants. They are inconspicuous too, sitting on the shelf at home. NEPA has made available to our participants 280,000 needles between January and July 2016! Lastly, one other resource of information is nasen.org, which is the North American Syringe Exchange Network, where there is also a directory of exchanges by state, and some great research data that may be of further interest to some. Thanks for the great work you do. Peace.
Michael Harney Coordinator
NEPA Asheville, North Carolina
EDITOR’S NOTE: Thank you—these are great tips. Our prevention staff here at TPAN tells us that thick detergent bottles meet OSHA standards for safe syringe disposal.
HIV drug guide
My gratitude goes to POSITIVELY AWARE for publishing the HIV Drug Guide (March+April). I can hardly believe that PA has been publishing this guide for 20 years now. I remember the very first one in 1997. Each year, the number of pages expanded with more and better HIV drugs. Equally, the design of the guide has evolved as well. It’s the only issue of PA that I keep on hand, in a file, so it’s ready to go. Every so often, a friend, or someone, asks me about a certain drug. I say, “Hold on, let me get this guide.” Sometimes, I make a copy of a single page and mail it. Other times, I read out loud certain passages to someone on the phone. The design is special because each page is portable and stands on its own. It gives all the information I need without being overwhelming. I especially like the “Activist’s Comments” because I know I’m getting a richer, fuller description of the drug. When I compare the first guide in 1996 to the guide in 2016, I’m reminded of how far we’ve come. The drug guide is a symbol of the progress we’ve made against HIV. Given the breakthroughs over the past 20 years, I’m honestly hopeful about the future. I’m convinced that the guide—someday soon—will include “the cure.” For providing us all with easy-to-understand, objective, and lifesaving information over the years, I thank all the remarkable people at TPA Network and POSITIVELY AWARE.
Insights from a former volunteer
As a long-term survivor with many friends lost to AIDS, I feel we veteran patients have a wealth of education we must pass along. I have been on Medicaid and have had unaware case managers and doctors, due to the fact that the doctors I get are residents and have a turnover every four years. Case managers leave because they become knowledgeable and go on to better paying jobs. I hope this doesn’t offend interns and case managers— this has just been my experience. Because of all this, a patient at end stage of AIDS or kidney or liver issues can fall by the wayside because they often cannot speak for themselves. Case managers like the one I currently have don’t know that a resident often doesn’t have a clue what and where to put what on a form so they can get services such as crowns for teeth, that Medicaid in California doesn’t cover and is often some outrageous amount such as $500, when patients are living on SSI [Supplemental Security Income from the Social Security Administration, or disability] and other entitlements. I have had to educate doctors on what to put on Ryan White forms. In 1990 I tested positive. TPA [as TPAN was then known] was a new agency. I met hundreds of men and some women. Everywhere I went reminded me of whom I lost. In a couple of years I will be 60. I lost all of those friends and co-volunteers back then and now it is even more difficult to make friends. I am starting to have kidney problems because of the many years of being on medications to save my life. I am glad for the life I had, but still mourn for those I have lost. If I live to be 100 it will still hurt. I hope what I write will help others.
former TPAN volunteer