This article originally appeared in MAMM Magazine
SERVICES DENIED:
Why Women With Disabilities Aren't Screened For Cancer
By Christine Haran
Five years ago, when kate McCarthy-Barnett,
who uses a wheelchair, was 26, her doctor found a lump in her
breast during an annual clinical exam and recommended a mammogram.
"I was handed a Johnny and told to go change," says
McCarthy-Barnett, whose mother, Rhode Island Breast Cancer Coalition
Chair Marlene McCarthy, was herself diagnosed with breast cancer
in 1988. Since the Rhode Island hospital where McCarthy-Barnett
was seen had no wheelchair accessible changing room, she was forced
to change in the open waiting area while her mother held up a
sheet.
McCarthy-Barnett was then told she would have to stand up for
the mammogram. After a disbelieving technician said, "You
mean you can't even stand for a minute?" McCarthy-Barnett
"hung on for dear life to a rickety stool" while her
mother, wearing a lead apron, held her up. "Let's see how
long you can do this before you fall off." were the only
words the technician had for her, McCarthy-Barnett says.
Despite the requirements of the federal Americans with Disabilities
Act (ADA), women with disabilities, including physical and developmental
ones, as well as hearing and vision impairments, routinely encounter
health professionals who are unprepared to meet their needs and
are, oftentimes, shockingly insensitive. Not only do women face
this lack of awareness, they also often deal with inaccessible
health care facilities and medical equipment. Together, these
conditions create barriers to quality health care, including breast
and cervical cancer screening, and may contribute to the delayed
diagnosis of these diseases in this population.
Some disabled women, among them researchers and health professionals,
as well as some non-disabled health professionals and researchers,
are now advocating further study of these long-neglected problems,
as well as the use of educational programs for both health care
providers and disabled women themselves. "Accessibility goes
beyond making sure a building is accessible 'I, says McCarthy-Barnett,
who writes about disability issues. "Access equals changing
attitudes and making sure women with disabilities receive the
same [services] as other women."
AN UNDESERVED POPULATION
Very little time and money
have been devoted to studying the roughly 26 million women with
disabilities living in the United States. But even though data
on breast and cervical cancer screening among disabled women are
limited, some evidence suggests such women are not screened as
often as their non-disabled peers.
A report published in 1998 in the Center for
Disease Control and Prevention's (CDC) Morbidity and Mortality
Weekly Report indicated that women with functional limitations-such
as the inability to lift 10 pounds or to walk up 10 steps without
resting-were less likely than those without such limitations to
have had a Pap test for cervical cancer within the previous
three years. The study also revealed that women over age 65 with
disabilities were less likely to have ever had a mammogram than
other women their age. In a 1999 Archives of Physical Medical
Rehabilitation study that analyzed data from the 1995 Medicare
Current Beneficiary Survey, disability among Medicare patients
was a risk factor for not receiving mammograms and Pap tests.
Part of the problem lies with health care providers who fail to recommend pelvic and breast exams to their disabled patients, or to teach women or their care givers how to do breast exams. The women's primary doctors, who are frequently specialists in specific diseases, are often so focused on the women's disabilities, they forget about standard gynecologic care. "Women with disabilities have the same health care issues as other women," says JoAnn Thierry, public health advisor at the Disability and Health Branch of the CDC, "but these issues get complicated by their disability." According to Thierry, health care providers often view women with disabilities as asexual, and therefore not candidates for Pap tests and mammograms. Providers also tend to assume that a woman's disability prohibits a comprehensive exam.
But "how a Woman is configured has very little to nothing to do with her breast health," says Amy Langer, breast cancer survivor and president of the National Alliance of Breast Cancer Organizations, who has been using a wheelchair since she was injured in an auto accident four years ago. "My own experience is that perception is very powerful and that people make galling assumptions about a woman's health status or ability to adapt."
Sometimes women with disabilities, like their providers, are also unaware of their breast and cervical cancer risk. Shirley Estill is a program coordinator and volunteer role model at the University of Alabama (UAB) Spain Rehabilitation Center in Birmingham. Twenty-six years ago, Estill, now 41, was paralyzed in a car accident. "A lot of women [with disabilities] are not aware that they're at risk," she says. "They don't want to be bothered with it. If you've had a car accident and a spinal cord injury, you think you've had your major trauma. It's a mind-set of 'I've had my share.
PHYSICAL BARRIERS
Obtaining a referral for
a Pap test or mammogram, however, is only the first of many obstacles
women with disabilities face when trying to get good preventive
care. Inaccessible equipment, as well as untrained providers,
can interfere with the quality of screening women with disabilities
receive. There are no national and few state surveys on accessibility
at health care facilities, so it is difficult to gauge how available
accessible equipment, such as adjustable mammography machines
and exam tables, is on a national scale. While some mammogram
machines require that the woman stand, others can be adjusted
to allow screening of a woman who has been transferred from her
wheelchair to a stool. The most accessible machines, such as Trex
Medical's Lorad Contour 2000 and those in GE Medical Systems'
Senographe line, allow a woman to stay in her wheelchair for the
duration of the exam. Likewise, there are a range of exam tables
on the market: standard tables that are usually too high to allow
for an easy transfer from a wheelchair, low exam tables, power
tables that can be adjusted and a custom-designed power table
for women with disabilities developed by Sandra Welner, MD, an
assistant professor in the OB/GYN department at Georgetown University
in Washington, DC.
Some women, such as Victoria E. Brown, president
of the non-profit, Florida-based National Alliance of the Disabled,
are not receiving cancer screens because of inaccessible equipment.
Brown, who lives in Orange Park, Florida, is a wheelchair user
and is partially deaf. Even though she had a lumpectomy for a
benign cyst in her right breast 10 years ago, she says, "there
is no place here I can get a mammogram ... You call and tell them
you're disabled and cannot stand. And they say 'that's no problem.'
But once you are there, it's a wasted trip."
Likewise, inaccessible exam tables probably keep cervical cancer
screening rates low among disabled women. McCarthy- Barnett tells
the story of a Rhode Island gynecologist who wondered why he had
so many patients with disabilities. She told him it was because
he was the only gynecologist in the Yellow Pages whose receptionist
said they were wheelchair accessible.
Unfortunately, some Pap test providers aren't aware of the existence of Power tables. When MAMM called several health care facilities around the country to inquire about accessibility issues, jackie Squires, a certified nurse midwife at a community health services clinic in Bloomington, Indiana, seemed to speak for many smaller health care centers when she said that if a woman with a physical disability came in for a Pap test, "we would be in deep trouble."
To meet the needs of women like Brown, Dr. Welner, a consultant in women's health and disability, developed the first wheelchair accessible power examination table. It hit the market in 1996. 1 didn't plan to do it," Welner says. 1 didn't have anything else to use. It was very hard for [my disabled patients] to get Pap tests and clinical breast exams." Welner adds that her elderly patients and those with orthopedic problems weren't being screened for the same reasons.
The table, which is manufactured by Hausmann Industries in New jersey, can be lowered to allow for an easy transfer, and has hand rails with a locking pin to make women feel more secure, as well as soft 'boot' stirrups that are sold separately. "They were things patients told me they wanted and needed," Welner says. The table is about 15 percent more expensive, or $1,000 more, than a comparable power table; Hausmann estimates that about 100 tables are now in use.
A LACK OF TRAINING.
Women with disabilities
say an exam administrator who knows how to screen them properly
is at least as important as an accessible machine. Finding such
providers can be hit or miss, especially at a local facility.
Margaret Nosek, PhD, director of the Center for Research on Women
with Disabilities (CROWD) at Baylor College of Medicine in Houston,
has spinal muscular atrophy and uses a wheelchair. When Dr. Nosek
first went for a mammogram, she visited her local breast center.
"They could only examine 10 percent of the breast tissue,"
she says. 'I went to MD Anderson Cancer Center in Houston and
they had really good technicians and called in three other people
to help. It was the first time I've had a complete exam."
Breast cancer survivors are, of course, particularly concerned
about getting a complete exam. Medical technologist Cheryl Stone,
49, of Orlando, Florida, was diagnosed with Stage 11 breast cancer
in the fall of 1995 after a lump showed up on her mammogram. Stone,
who had polio in 1954 at age three, now depends on braces, a scooter,
a wheelchair or crutches. When she went for mammograms before
she got a hydraulic scooter with an adjustable seat, 1 had to
get into a chair and try to keep my balance," says Stone,
who worried that her movement would blur the mammographic films.
"Sometimes [technicians] work with the patient to get the
best they can get," she says. But if you've had breast cancer,
you want the optimum."
Premium cancer centers can generally offer the optimum, or close to it, but relatively few women live close enough to one to use its services. D. David Dershaw, MD, director of breast imaging at Memorial Sloan-Kettering Cancer Center (MSKCC) in New York City, says that MSKCC has mammography machines that allow women to stay in their wheelchairs. According to Dr. Dershaw, 11 the bottom line is you need [a technician] who is experienced. " Radiologist Lori Van Amberg, lead mammography technologist at City of Hope National Medical Center in Duarte, California, agrees that staffing is the key to a quality mammogram for women with disabilities. At City of Hope, two technicians screen women with physical disabilities in order to help ensure proper positioning.
SPECIAL NEEDS
Lack of training on the part of the medical professionals
who administer the exams not only leads, frequently, to substandard
exam results, but can make screening an awkward and sometimes
humiliating experience for women with disabilities. Estill of
UAB was keenly aware of her breast cancer risk-her mother died
of the disease in her early 40s. Yet before Estill moved to Birmingham,
she was living in rural Alabama, where she found getting a mammogram
an extraordinarily trying experience. "When I'd go [for a
mammogram], people didn't have much experience with spinal cord
injuries. It was just uncomfortable ... People didn't understand
about the paralysis or the catheter [which Estill uses to relieve
her bladder]. It was such an ordeal, 1 didn't even want to go.
I wanted to fool myself into thinking I didn't need to."
As polio survivor Stone explains, "Most health care centers and hospitals are not geared toward people with disabilities. It's 'Hop on the table. Scoot over here.' But there's no hopping or scooting with someone like me."
Routine reproductive health care is difficult for hearing impaired women as well, because it is often impossible for women to communicate with their doctors. Few health care centers and hospitals have sign language interpreters on staff or TDD machines-also known as TTY machines-which are used to facilitate phone communication. At a recent conference, Focus on Women's Health Around the World in Support of the Beijing Platform for Action, Carol-lee Aquiline, general secretary of the World Federation of the Deaf, described a typical health care experience. When making an appointment for a Pap test, Aquiline told the receptionist she'd need an interpreter. She called ahead to make sure someone would be there. "They said a Mr. Bill would be interpreting," she recalls. 'I rescheduled and a female but unqualified interpreter [was found]. This is just one of the roadblocks in trying to access quality sign language interpretive services."
Women who are visually impaired face other communication-related obstacles. According to Penny Reeder, editor of the Braille Forum, published by the American Council of the Blind, "When [health providers] do anything, a Pap smear, for example, it's best they describe what they're doing." Reeder also points out that few doctors' offices or cancer organizations have educational literature available in Braille, on audio cassette or in large print. Thus, blind women may be less likely to know how to do a breast-self exam or where to get a free cancer screening.
There are, however, several women's health centers around the country that are explicitly designed to meet the needs of women with disabilities. Breast Health Access for Women with Disabilities (BHAWD) at the Alta Bates Medical Center in Berkeley, California was set up to offer comprehensive breast health services to women with physical and vision impairments. BHAWD offers free clinical breast exams (given on Welner's table), breast self-exam training and mammogram referrals to accessible sites, when needed.
The idea for BHAWD came into being in 1994 during a discussion about breast self-exam in oncology nurse Shirley McKenzie's support group for newly diagnosed women with breast cancer. A woman with cerebral palsy "looked me in the eye and said, 'what about those who can't?,'" McKenzie recalls. 1 said, 'I'm so embarrassed, I've never even thought of that.'" McKenzie, now manager for the breast program at Alta Bates Comprehensive Breast Center, proceeded to get in touch with organizations in the disabled community, such as the Center for Independent Living, and the grant-funded clinic was launched in 1997. Since that time, more than 500 women have visited the clinic.
"The key to BHAWD's success is its partnership with women with disabilities," says BHAWD manager Florita Maiki, who hopes that other medical facilities "will take empowerment from our model," even if they don't create separate centers for women with disabilities.
The Women's Clinic for the Disabled at UAB also offers targeted reproductive health care services-ones that helped Shirley Estill. decide to start getting mammograms again. " [At the UAB clinic], they understood my special needs and made it more comfortable and convenient," she says. 1 was more likely to go."
"The staff are used to dealing with certain aspects of disability," says clinic founder Amie Jackson, MD, a physiatrist, a physician who works with individuals with disabling conditions. "[For example], a women with a spinal cord injury may be paralyzed but a [gynecological exam may set off a bowel reflex. We try to make patients feel comfortable [so they know] this is something that can be expected."
"Sometimes women with disabilities have underlying neuromuscular conditions that can mimic problems [associated with cancer]" Dr. Jackson continues. "Signs of cancer, such as swelling and pain, are not recognized. A clinician might think it's part of their primary disorder. But they are women first-you can't forget that."
Other specialized women's clinics include the Center for Women with Disability at Western New York Neuroscience Center at Kaleida Health's Buffalo General Hospital in upstate New York, where cervical exams are administered in a custom- designed dental chair, the Health Resource Center at the Rehabilitation Institute of Chicago (RIC) and the Women's Health Center at Far Northern Regional Center in Redding, California, which also accommodates women with emotional difficulties, such as a history of sexual abuse, which can make getting a breast or cervical exam difficult.
IT'S THE LAW
Although these centers
offer high-quality health care and a comfortable experience, most
women with disabilities are screened at hospitals and health care
centers without specialized clinics. Yet, legally, they should
not have to seek out these special centers for routine health
care. Under Title III of the ADA, which was passed into law in
1990, women have a legal right to accessible public accommodation,
which includes services at hospitals and the offices of health
care providers. There is wiggle room, however: The law states
that "barriers to services must be removed if readily achievable,
which means the removal must be easily accomplishable and carried
out without much difficulty or expense.
The ADA is enforced through the U.S. Department
of Justice (D0J)-the DOJ investigates individual health care facilities
when complaints are made. (The DOJ ADA Infoline is 800-514-0301;
the TDD number is 800-514-0383.) According to Liz Savage,
counsel to the Acting Assistant Attorney General for Civil Rights
in the DOJ, 1 readily achievable' is a flexible standard. "More
is expected of hospitals with greater resources," Savage
says. 'It may not be readily achievable for a small, nonprofit
clinic to replace a mammography machine." These communities
should look at creative solutions, she says, such as sharing equipment
or arranging for patients to be screened at an accessible facility
at no extra charge.
Still, facilities do not seem to be scrambling
to comply with the law. [Access] is still not at the top of the
agenda," says Kristi Kirschner, MD, medical director of RIC's
Health.
Resource Center for Women with Disabilities.
I'm still struck by the numbers of people who are unselfconscious
about saying 'We don't do that here.' They don't even realize
they have a legal responsibility."
ADVOCATING FOR ACCESS
There are
a number of ongoing efforts to educate both health care providers and
women with disabilities
about access to quality screening. Louise Fisher, executive director
of the non-profit organization Ohio Women with Disabilities Network,
is working with the Ohio Department of Health Breast and Cervical
Cancer Project on a program that will reach out to both women
and providers. "What is going to be most wonderful is the
continuing education of the providers," Fisher says. "This
is a population that they need to learn to serve, particularly
as people grow older." The Rhode Island Breast Cancer Coalition
(RIBCC is conducting an accessibility survey of mammography
sites in that state; everything from changing rooms to TDD machines
will be reviewed. Once the survey results are analyzed, RIBCC
members will attempt to meet with management to tell them how
their facility ranked and how they can become more accessible.
Sensitivity sessions will be offered, and, ultimately, the organization
hopes to put together a booklet. "We're hoping this will
be a model," McCarthy says, "and will stimulate discussion
and action." Welner is doing a similar project in Washington,
DC. She is also at work on a video for called "Our Own Best
Advocates: Breast Health for Women with Disabilities" with
funding from the Susan G. Komen Breast Cancer Foundation.
Educating women with disabilities about these
issues is crucial, says UAB's Jackson. It's about getting [them]
to be empowered with their own sense of health-and not accept
1 well, we can't do that for you. 111
Most disability experts agree that research
will enhance efforts to educate women and their providers. For
now, though, CROWD is the only facility studying this population.
According to director Nosek, "We have to have pilot data.
All we have now are the questions." Nosek would like to explore
whether women are receiving complete exams, problems with delayed
diagnosis and the role of disability in cancer treatment.
The overarching goal of CROWD's research is
to improve the health and well-being of disabled women by changing
attitudes, thereby helping ensure quality screening for this huge
population. "The image of the active, vibrant disabled woman
is not what physicians think of," Nosek says. "When
you say the word 'disability,' they look at it as the opposite
of health, as near death ... [But] you can be healthy and have
a disability. That's a revolutionary concept for the traditional
medical professional."