"HOCC is more than a support group - it is for all of us - very educational to keep us healthy - it's the family I wished for my whole life and it took HIV and finding HOCC to find it"
(HOCC participant for 8 years / June, 2010)
In 1997, in response to a lack of gender specific HIV programs or services for women in the Greater Boston area, a small voluntary group of concerned women established a nurse-led, peer-driven grassroots prevention and education program for women infected, affected, or at risk for HIV/AIDS. From the beginning, the purpose of each program was to address the growing health care needs of HIV positive women and to provide emotional support and education for all women. The first programs, initially called “What’s In It For Us”, were defined by the questions HIV positive women were asking when their
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Non-profit organization for women infected with, affected by, or at risk for HIV/AIDS
attempts to connect to other women services or care were significantly limited or nonexistent. Options for support for the growing numbers of HIV positive women were primarily met in rooms and programs for gay white men, which kept most women isolated and silent. The small band of advocates for women attempted to seek funding from state and federal funding streams to support programming for women to no avail. As the numbers of HIV positive women continued to grow, gender specific services remained limited and lacked the financial support needed to effectively reach the underprivileged and under-served communities of inner-city women. In response to this now defined population of women and their needs, the HIV advocates decided to work more collaboratively with other concerned women across the city and organized themselves as the “Healing Our Community Collaborative” (HOCC). All of HOCC’s programs, projects, and activities are for women, by women, and about women.
This page was last updated: May 10, 2017
Silent No More: Women's Journeys
In 1984, I was arrested and sent to federal prison. My children were raised by an aunt while I was incarcerated. During this time, my past began to haunt me. When I arrived in Framingham, I met up with a girlfriend from my neighborhood. She wanted to get tested for the virus, but she was scared. The buddy system worked for us, because we found the strength to get tested together. Two weeks later we received our test results. She was negative, and I was positive. I didn’t know what to do with the news. I never received any HIV drugs, HIV counseling or any other information about the virus. After I got over the shock of my diagnosis, I buried the truth inside myself.
During my five years in prison, I never received any medical care. In 1989, when I finished my pre-release, I resumed my old life, which included drinking and drugging. I kept up my old habits for three months before I got very ill. I was living alone and one day I got real sick and went to the emergency room at a local hospital, I could barely walk but, after being seen by a doctor they sent me home. I thought because they had sent me home that I was okay, but I just got sicker. I know now that they should have known how sick I was because I told them I was HIV positive. I remained so sick when I got home and all I could do is just lay on the couch, in fact my partner found me passed out and not breathing and I barely made it back to the hospital. I was admitted this time and ended up in the ICU for two weeks and remained in the hospital for a total of 75 days with pneumonia.
When I was transferred to a regular room I was so weak I couldn’t even walk and they kept me in bed and kept me on oxygen to help me breathe. I struggled to get better each day and I told myself I was going to fight this. My belief was that I had the disease; the disease did not have me. I remember feeling that I was invested in getting better but it didn’t feel like the staff and doctors were really helping me to get better by keeping me isolated and in bed the whole 75 days. I wondered if I was being treated this way because I was HIV-positive, because I was poor, or because I was an addict.
Following my discharge from the hospital I decided to go to another health care center in Cambridge and I finally received the medical care I needed to take care of myself. On my first visit, my doctor told me I had a T-cell count of two and I was diagnosed with AIDS. The staff started teaching me about HIV and I learned about the importance of taking my medications and adhering to a drug cocktail that could save my life. Although I got real good at taking my medications – all I can remember is just crying a lot. It seemed all I could do was cry, but I did start to get stronger.
By 1990, I got custody of my children. I felt like I needed to tell them that I was HIV-positive, so with help on how to disclose to help them understand, I told each of my daughters one by one.
Today, I continue to learn about HIV/AIDS by educating myself as much as I can. When you find out that you are HIV positive the world around you seems to stop, I know it did for me. But the support I got and continue to receive from my clinic and organizations like HOCC have made my life easier. In fact, today I give back to the community by starting a support group in Cambridge, I sitting on five HIV advisory boards, and currently working two jobs in the field of HIV/AIDS.
I have been clean and sober for three years. Most recently, my daughter told me how proud she was of me and what I’ve accomplished. That meant so much to me. I have overcome so many barriers, so that I may lead a healthy life, be a good mother and grandmother, and be an advocate for other women I wish I had 23 years ago. Having AIDS has affected my life in a way to help others by sharing my strength and hope for each other. All I can say is that I wish I knew then, what I know now. Take my message and get educated about HIV/AIDS today.
I have been positive for 23 years and against all odds, I’ve overcome struggle after struggle, and I have become a stronger person as a result. Like many women, I did things in my past that I wouldn’t do today to keep myself and my children alive and well.
I contracted HIV while having sex for a fee. I used the money to support my drug addiction. I started smoking crack and drinking shortly after having four daughters, who are now lovely young women. For me, smoking crack and drinking went hand in hand. I couldn’t have one without the other. I drank and drugged throughout the time I was also raising my children.
Christine Johnsen (Founder & Co-Chair)
Jo Ann Coull (Co-Chair)
Executive Director: Heidi Bright