.
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.
In 2006, a Department of Justice (DOJ) study found that women in prison
are at significantly greater risk for cancer than their male
counterparts. Out of every 10,000 incarcerated women, 831 had cancer,
compared to 108 per 10,000 men. Of those,
91 of every 10,000 women behind bars reported having had or currently having breast cancer. Given that 114,979 women were behind bars at the end of 2009, this would mean that
over 1,000 women have had or currently have breast cancer.
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. [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.] 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. [Interview with Bonnie Kerness, December 28, 2011]
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. Post surgery, 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. [See: "
A Cancer Grows,"
in The Nation, and A. Clay Thompson, "Cancer in the Cells," San
Francisco Bay Guardian February 24, 1999 (not available online)]
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. [Interview with Sue Ellen Allen, December 27, 2011]
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. [Interview with Bonnie Kerness, December 28, 2011]
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.
Posts
