RESEARCH TRIANGLE PARK – Dr. Wendee Wechsberg has been on a mission over the last several years: Gathering stories of people involved in the war against HIV over the past three decades so their battles and achievements won’t “get lost.” The book is especially “personal,” as she has been on the front lines herself.
Dr. Wendee Wechsberg
“Because of my own personal story and my professional start in clinical addiction treatment in 1977, many of the authors are people I have known all these years in the field,” she writes, “and I am grateful they agreed to be part of this book.”
Wechsberg, who is director and principal researcher of the Substance Use, Gender and Applied Research Program at RTI International, is the editor of “HIV Pioneers: Lives Lost, Careers Changed and Survival,” which is just out from Johns Hopkins University and RTI International Press. Among the stories is a chapter focusing on her own efforts in North Carolina that date back to launching an outpatient drug treatment program in 1984. In an exclusive Q&A with WRAL TechWire Editor Rick Smith, Wechsberg talks about her goals, the stories she collected, and why the book is important.
- Congratulations on the publication of the book. Such an important topic.
Thank you, we are happy there will be a more formal launch at the International AIDS conference in Amsterdam next month. Many of the authors and reviewers will be there.
- Have you had personal experience with anyone who has been afflicted with HIV? How has that affected you?
Many, but in the book I wrote about my two good friends in the beginning days who were advocates and died too soon. One was only 29 years old. In my work, many of the women are living with HIV but if they access and adhere to their treatment they can live healthier lives.
However, other disparities affect our success as many of these women need food over concern in taking their medication, so social determinants are a reality, also many will drink alcohol or do drugs that also are barriers to adherence. So as I wrote, we are NOT Done!
- How did you become involved with the book and why did you want to? How does this topic and work link to your work experience and education?
I decided to put together this book more than four years ago when an important woman in the field who diagnosed the first AIDS case in India died. I thought she was a pioneer and I was at an AIDS conference at the time realizing since we all started in the AIDS field, more than 30 years ago, the stories are going to get lost, so we need to write them.
- Why is this book important? What’s the message?
The importance is relative, it is historical, emotional and tells stories from young clinicians not knowing what this disease was, to the government’s response, to survivors and lost loves. It is not a full picture or everything but it is a collection across the spectrum.
HIV Pioneers
- What did you find most surprising from the stories people shared for the book?
It was challenging to get all the stories, including writing my own. Also the cutting and editing, one was taped and had to be transcribed but I found myself re-living the times, the stigma and discrimination, the myths, the sadness but also that the journey has strengthened our passion to stay in this field.
- Did you find signs of encouragement and hope?
There are some very emotional and moving stories, for example the one about the Black church, military abuse and over time forgiveness with a father and son. Another was one about a little girl born with HIV and sheltered by her father and grandmother until she had an accident in the playground and was shunned by her best friend.
One very important story is about the needle stick accident that occurred with a young nurse that launched the Healthcare Worker Safety Law yet her seroconversion made havoc in her personal life to this day.
- What about the despair and difficulties? How do these afflicted people and their families/significant others cope?
There is sadness, and there were challenges, especially getting treatment. One story shared what it took to take care of his partner through the end. But there is tremendous human spirit and love.
- Will the book’s success be determined by sales or by other measures? What would make it successful to you?
I have no monetary rights, I suggested if money was made it get donated to an AIDS orphanage, as I have been a donor with one in South Africa. But success is about the telling of the stories so they are not forgotten.
HIV may have disappeared from the headlines in the US having become a chronic disease but in sub-Saharan Africa and South Africa where I work, it is the leading cause of death among childbearing women.
Reading some of the history also demonstrates how far we have come in HIV science and saving lives but challenges remain. Sharing the stories are reminders so we do not forget.
Note: Wechsberg others other roles beyond her post at RTI. She also is:
- Adjunct Professor, Gillings School of Global Public Health: Health Policy & Management, UNC at Chapel Hill, NC
- Adjunct Professor, Psychology in the Public Interest, NCSU, Raleigh, NC
- Adjunct Professor, Psychiatry and Behavioral Medicine, Duke University School of Medicine, Durham, NC
