by Terry Lee Derrick
So what do you do and how do you feel when Governor Bredesen replies to your e-mail regarding your concerns about being cut from TennCare by saying “You don’t have to worry, we will not cut people with disabilities and on SSDI (disability insurance) like yourself, from TennCare” and then, nine months later, gives you the Dear John of health insurance letters?
Well, in the case of Larry Clein, who has been in a wheelchair for the last five years due to osteoporosis, he has instructed his relatives that when he dies he wants a notification sent personally to Governor Bredesen. And he also goes on with his life as best he can.
Larry has been a patient at the Comprehensive Care Center (CCC) for eight years, since his diagnosis with HIV, and he has nothing but the highest praise for the staff and its services. Even with the large client base (at least 2,500) he feels he has been given complete and personal attention for all his needs over the years.
Larry, like many HIV+ patients these days, is relatively low maintenance. When it comes to his HIV disease, mostly it’s a matter of going in every three months and having blood drawn to check his T-cell and viral load counts. His stats, as it were, are great due to his total adherence to his meds regimen. Adherence is the key to preventing both drug resistance and a breakdown in treatment.
Larry feels that the CCC is a treasure and a gift to Nashville with its connection to Vanderbilt, whose state of the art research and clinical trial programs keeps CCC in the loop with the latest in developments and care.
Its greatest single human asset he feels is in the form of Dr. Stephen P. Raffanti, an associate professor of Medicine in Infectious Disease for Vanderbilt Medical Center and medical director of the CCC.
Raffanti is one of the leading HIV specialists in the country. These and other factors have made CCC one of the premier clinics of its kind in the U.S. Larry has been seeing Dr. Raffanti personally since his (Larry’s) diagnosis. He says Dr. Raffanti calls him his poster boy of adherence.
Larry is definitely not someone who is just looking for a handout or sitting around waiting for life to happen.
At 41 he is in school at MTSU and is two years away from graduating. He has a double major in psychology and biology, and with the two degrees he intends to work in hospice care. He has suffered from osteoporosis since childhood, and in the last five years he has had to surrender to using a wheelchair most of the time. He can’t take drugs for his condition due to his reactions to them in conjunction with his HIV meds. Despite this, not only has Larry been enrolled in school, but he has also been active for a long time as a representative through Nashville Cares, talking to students about HIV. Most recently, he has been talking to classes on campus at MTSU that have invited him to speak. Over the years, he has talked with classes as young as the sixth grade. Larry says he has never cared what the policies are concerning condoms; he always talks about them anyway because, as he puts it, “My main concern is not seeing anyone else have to suffer or die from this disease. Also, there are young people who think that if they become positive that they can just take a pill. But some of the meds one might have to take are not that pleasant as far as side effects are concerned. All my friends I knew in Dubuque, Iowa, where I grew up, that were positive when I lived there are dead now. Of course that was the eighties and early nineties before protease inhibitors were available. I was at 212 T cell count (800 to 1200 is normal range) when I was diagnosed eight years ago and started meds immediately, and I am in great health now in that regard. But I made the mistake of thinking because I was asymptomatic I was fine. Then one day I found a lump on my chest and thinking it was probably cancer saw the doctor and was soon diagnosed with HIV. I have nothing but the highest praise for the CCC and its staff and their care for me since my diagnosis.”
With thousands of HIV positive people in the middle Tennessee area (yes, thousands) Larry is just one of the many who need and will continue to use the invaluable services of CCC.