Imagine finding a lump in your breast. Imagine that your efforts to schedule a medical check-up are stymied and you have to wait weeks, if not months, for that initial exam. In the meantime, the lump continues to grow. Imagine that, when you finally do see a doctor, you are told that you have breast cancer. When you walk out of the office, you are locked into your prison cell with no more information or sympathy than when you walked in. This is the daily reality for women in prison.
Despite these numbers, prevention, screening, diagnosis, care, pain alleviation and rehabilitation for breast cancer remain virtually nonexistent in prisons. In 1998, a study at an unnamed Southern prison found that, although many were at high risk because of family histories, women were not provided with a clinical breast exam, information or basic education on self-examination upon admittance. Seventy percent of women who should have had mammograms under standard medical procedure had never been tested.# Even women who enter prison already diagnosed with cancer must fight to receive lifesaving medical care.
Fifty-two-year-old Margaret DeLuca had already been diagnosed with stage 3A breast cancer and undergone a left-breast mastectomy before arriving at Clinton Correctional Facility in New Jersey.#“She knew exactly what she needed, but was unable to get it,” stated Bonnie Kerness, a human rights advocate and coordinator of the American Friends Service Committee's (AFSC) Prison Watch Project, who helped DeLuca fight for proper medical care. Their advocacy resulted in incremental improvements in DeLuca's medical care but did not change the prison's health care system.#
Like DeLuca, 57-year-old Sue Ellen Allen entered Arizona's Estrella Jail with a diagnosis of breast cancer (hers was Stage 3B). She had also undergone six sessions of chemotherapy and was awaiting a mastectomy. Two and a half months later, she was awoken at midnight, then handcuffed, shackled and transported to another jail. At 9 AM, she was moved to the hospital for the mastectomy.
“I am locked in a room alone, freezing. I ask for a blanket. No, they snarl. Why is everyone so nasty?” she recounted. “I haven't eaten in twenty hours, I haven't slept, I'm freezing and facing surgery alone.” After the mastectomy, Allen should have begun chemotherapy, but the jail delayed it to avoid shouldering the costs. Allen did not receive chemotherapy until she was transferred to the Perryville prison three months later.
The chemotherapy made Allen sick.
“On my way back to my yard, I collapse, vomiting. A guard comes and asks if I can walk the three blocks to medical. There are no wheelchairs.” Allen collapsed and vomited twice while walking to the medical unit. Staff watched her, but the only acknowledgment she received about her condition was when a sergeant asked, “What's the issue, Allen?”
Allen made it to the medical unit, where she continued to vomit into a wastebasket. The prison's doctor was not available to administer the shot that would stop Allen's vomiting. Allen continued to vomit for an hour. “Even the nurse is frustrated. She says there is no other emergency. He's doing paperwork.” When the doctor arrived an hour later, Allen recounts, he was obviously irritated. “He acts like I'm faking and reluctantly administers the shot. Eventually, I am sent back to my room alone. I am dismissed.”
Allen underwent three more chemo treatments. “Despite the rigid schedule, never is the medication ready on time, nor is the newly discovered chemo diet ready. I have to spend my sickest days walking to Medical, begging for what I'm missing. When I'm supposed to be healing, I'm worn out battling for proper treatment.”
Allen is one of the more fortunate; she survived the ordeal. When 36-year-old Christina found a lump in her breast in April 2002, Perryville's medical staff ignored her concerns. By the time she was taken to the hospital in September, the lump had grown so large that the hospital skipped the chemotherapy and performed an immediate mastectomy. By then, however, the cancer had already spread to her other breast. Christina died the next year, three months after being released from prison. “If her cancer had been diagnosed and treated when she discovered her lump, maybe she'd still be alive,” Allen wrote.
While breast cancer survivors and advocates outside prison would be horrified at these obstacles and delays, Allen received relatively prompt treatment under what passes as current standards for prison health care. Sherrie Chapman, a woman incarcerated in California, waited much longer.
In 1985, Chapman, who had a family history of breast cancer, found a lump in her right breast.# She alerted the prison's doctor, who dismissed her concerns. Chapman persisted in demanding that the lump be further examined. In 1994, when the lumps were visibly protruding from her right breast, she finally received a mammogram. The radiologist at the outside hospital found “extremely dense breast parenchyma” and recommended a follow-up mammogram within one year. Chapman was unable to convince the prison's medical department that she needed the follow-up mammogram until late 1994. This time, the radiologist recommended immediate follow-up tests. The prison's doctor, however, refused to order a biopsy, ultrasound or fine needle aspiration. The prison labeled her a “drug seeker” for her repeated requests for something stronger than Motrin for the pain in her breast.
In 1995, Chapman was examined by a different prison doctor, who immediately ordered a biopsy. By that time, the cancer had spread to both breasts and metastasized in her neck, forcing her to undergo two mastectomies. She recounted to journalist Cynthia Cooper that, postsurgery, guards signed her out against medical advice to return her to the prison. Staff ignored chemotherapy appointments. In addition, her uterus began to hemorrhage. Medical staff allowed her to bleed for 18 months before performing a hysterectomy. In 2000 and 2001, Chapman discovered other growths in her neck and shoulder areas. The prison doctor's response? “You've just got swollen glands. Don't worry; they're not cancerous.”#
Chapman appeared before the parole board in June 2002. The board rejected her and admonished her to use the self-help available in the prison, ignoring the fact that, by then, she was too ill to participate in groups that required regular attendance. She died on December 12, 2002, at the age of 45, under the custody of the California Department of Corrections and Rehabilitation (CDCR), with a prison guard posted in her room.#
Women have not quietly accepted this gross medical neglect and failure. They have attempted to advocate for themselves and draw attention to the issue. In California, Chapman testified before the legislature about the dangerous medical care in the state's women's prisons. She also filed a lawsuit against the CDCR and the prison doctor for ignoring her initial complaints about painful breast lumps. Chapman won and was awarded a $350,000 settlement. Her efforts also led to several magazine articles exploring the failures of the prison health care system to address the needs of those battling cancer.#
Breast cancer survivors imprisoned in other states have had less success in finding advocates and attorneys to help them push for change. Allen wrote letters to numerous lawyers, all of whom declined to file suit. “Most firms don't have the resources to fight the state,” she noted.
Allen did not allow the lack of legal support to deter her from trying to change the culture of prison indifference and isolation. Recognizing that each woman battled both breast cancer and the prison's life-threatening and indifferent medical care, Allen began a cancer support group. The process of starting such a group would be simple enough on the outside, but behind bars, nothing is ever straightforward. “It took me a year of begging,” Allen recounted, “but I finally got permission.” The group, which quickly grew to include 14 other women, met once a month with an outside volunteer from the American Cancer Society.
Allen remembered that women were initially reluctant to attend: “They didn't expect anyone to help them or care. They didn't know how to talk about their fears.” The support group provided them with a space to talk – and to vent. “There is no place in prison to vent,” said Allen. The volunteer also brought information about cancer, enabling the women to understand the protocols and procedures of cancer treatment and to know what questions to ask. Given that women are told nearly nothing about their illnesses, treatments and recuperation, such information is invaluable.
Looking back, she notes that, with the exception of Christina, all of the support group members were white. Although white women are more likely to get breast cancer (125 per every 100,000), African-American women are not far behind, with 116 per 100,000 diagnosed. Latinas, who make up the largest proportion of Arizona's women's prison population, have a rate of 91 per 100,000. Given these statistics, Allen wonders how many women of color remain undiagnosed.
Although Allen was unable to find an attorney or legal group to help file suit against the Arizona Department of Corrections, other prisoners' attempts to change the prison's medical care system over the years finally sparked outside action. In October 2011, Prison Law Office, a legal advocacy group for prisoners nationwide, sent a letter to Arizona Corrections Director Charles Ryan. The letter listed dozens of specific allegations of deliberate indifference to prisoners' health needs and asked Ryan to agree to a court injunction to address problems as a way to avoid a lawsuit in federal court. On November 17, 2011, Arizona's Department of Corrections signed an agreement to investigate the medical claims. Prison Law Office and the American Civil Liberties Union (ACLU) of Arizona agreed to delay any lawsuit for three months.
In New Jersey, DeLuca reached out to the AFSC to help her advocate for the care she needed. “It was a partnership between inside and out, which is often the most effective way to obtain change,” Kerness remembered. Although their efforts did not improve the overall quality of prison medical care, it did have a ripple effect within the circle of women around DeLuca. Through her example, other women became aware of the power of advocacy and their ability to help outside supporters advocate on their behalf.# Sadly, many women battling breast cancer and other serious medical issues lack outside support. Breast cancer survivors and advocates need to recognize that, for women with breast cancer and other life-threatening illnesses, a prison sentence may mean a sentence to death by neglect. Then they need to speak out and take action to help women inside successfully fight for their lives.
Williams, Roma D, Terry D. Mahoney, and R. M. Williams, Jr, “Breast Cancer Detection Among Women Prisoners in the Southern United States,” Family & Community Health 21.3 (1998): 32.