Fighting for Prison Health Care Above the Norm

On June 10, 1993, I was released from Albion State Correctional Facility for Women. "91G1505," as I had been called for the last three years of my life, was no longer property of the State of New York. The road, while hard and painful, was getting ready to take a new turn.

My name is Rusti Miller-Hill. I was diagnosed with HIV on January 1, 1991. At the time I had just entered drug treatment and was trying to put the pieces of my life back together after five years of substance abuse. Nowadays, as an advocate living in the community for the last 20 years, I most recently served as the co-chair of the Conditions on the Inside and Re-Entry Committee of the Correctional Association's Coalition for Women Prisoners.

During my incarceration, I was a victim of medical neglect due to policy and procedures. The procedure required you to place your name on a sheet of paper, commonly known as the "call out sheet," at 5 a.m. in the hopes of being called to the infirmary later on that morning, but even that was not a guarantee. As a woman living with AIDS while incarcerated, this was the regular routine. Many never signed that sheet of paper, instead choosing to remain silent about their status; while others prayed that their named would be called and there would be a doctor available to see them once they arrived at the infirmary. I chose the latter, letting go of denial and sharing my own status.

While I was full of fear due to possible stigma and discrimination, the support I received from the other women in my housing unit saved my life. I eventually became a peer educator in the AIDS Resource Room, and found what would become my life's work upon my release. Nearly 20 years later, I am still disclosing my status and advocating to advance the state of health for women living with HIV/AIDS in my own community.

In September 2009, New York State Governor David Paterson signed into law the Department of Health (DOH) Oversight of HIV/HCV [Hepatitis C] Bill. The law gives governance to DOH to oversee HIV and HCV care for the state of New York's correctional facilities and jails. Finally, thousands of incarcerated people living with HIV/AIDS and HCV would be given the same quality of care provided in communities. People who receive quality health services in prison are more likely to continue treatment after release, and to encourage family and friends to seek testing and care. I was ecstatic when this bill we'd been working and rallying so hard to have passed was signed into law.

However, this victory was bittersweet. Currently there is little funding available to implement the law to the fullest. Incarcerated women, who are our mothers, sisters and daughters, are continuing to serve two sentences: one imposed by the judge; the other either imposed by themselves (due to denial) or by inappropriate medical care due to the lack of access to HIV specialists and medications available to people living with HIV/AIDS in the community.

With the support of the Correctional Association's Women in Prison Project, the members of the Conditions on the Inside and Re-Entry Committee have monitored the progress of the bill, which is now a law. The Department of Corrections (DOC)'s recent response to the oversight law has resulted in the DOH conducting a review of state correctional facilities' policies and practices in the prevention and treatment of HIV/AIDS and hepatitis C. The public -- including formerly incarcerated individuals, their families, and advocates across New York State -- were invited to share their experiences in order to provide DOH with relevant information regarding medical care, or the lack of adequate care and treatment, while incarcerated.

The announcement was placed in the DOC's TODAY newspaper. My concern is, who has access to that??? And why wasn't the request placed in the Daily News, the Amsterdam News and/or the Post -- newspapers that are read by the same individuals that are currently housed in prisons throughout New York State?

Senator Thomas Duane, one of the supporters of the bill, assisted in getting an extension of the submission of testimonies from the community (the original date of June 16, 2010, was extended to June 30, 2010). I applaud the hard work of all parties involved and urge anyone who cares to share the experiences to forward their written comments to Darcy L. Hirsh at the address provided below. Despite the deadline's passing, we'll be gathering even more testimonies in the coming months.

June 10th marked the anniversary of my release date. This might seem like a long time coming to some, but 17 years later, I am glad I and many other women living with HIV/AIDS who are or have been incarcerated can now share our experiences.

For all the women who are not here to be a part of this process, please know that you are not forgotten. Your courage is what gives strength to my fight, in turn bringing voice to our lives. It is in your spirit that I continue to live another day to fight for the rights of incarcerated and formerly incarcerated women living with HIV/AIDS.

To date, I continue to educate the community regarding this law and encourage you to continue to submit documentation regarding your experience. I will keep you posted.

If you, a client or someone else you know wants to submit their experiences with health care in a correctional setting in the state of New York, please contact:
Darcy L. Hirsh
Associate Director of General Monitoring, Prison Visiting Project

The Correctional Association of New York
2090 Adam Clayton Powell Jr. Blvd. Suite 200
New York NY 10027
Phone: (212) 254-5700 x319

Send Rusti an e-mail.