According to the World Health Organization, breast cancer is the most common cancer among women, with an estimated 2.1 million new cases a year. In fact, 1 in 8 women worldwide will develop breast cancer at some point in their lifetime and for women with disabilities, that number is even higher- and a serious public health concern. Though these statistics are sobering, there is good news: thanks to early detection and improved treatment options, the death rate from breast cancer has been steadily declining over the past few decades.
For women with physical disabilities, getting a mammogram – which is currently one of the methods for detecting breast cancer early – can be a challenge. This is because many mammography machines are not designed to accommodate people with disabilities, and even when they are, the process of getting a mammogram may be more uncomfortable, difficult, or entirely impossible, based on the resources available at a given mammography site. Here, we’ll break down why it might be more difficult for those with disabilities to get screened, and some resources that may help to make the screening process easier.
Firstly- What is Breast Cancer Screening?
For any person, but more commonly for cisgender women and people that have a uterus, the potential for breast cancer is a reality of life. Many manage this by getting breast screenings regularly, often via mammography. This common exam involves taking an x-ray of the breast to find any potential cancerous tissue that would not have otherwise been detected.
Mammography, summarized, is the process of using low-dose x-rays to examine breast tissue for early detection of breast cancer. The x-rays are used to create images of the breast, which are then read by a radiologist. There are two kinds: Breast screening mammograms are used to detect breast cancer in people who have no symptoms of the disease. Diagnostic mammograms are used to evaluate breast changes that have been found on a screening mammogram or to investigate breast symptoms, such as a lump, pain, or nipple discharge.
While mammograms might seem uncomfortable and inconvenient, most people are able to get one without any issues. However, for some people, such as those with disabilities, getting a mammogram is not always easy; this can have long-term consequences on health if not adequately addressed.
Why Does a Disability Make it More Difficult to Get Screened?
Breast cancer screening participation rates are lower among women with disabilities than among women without disabilities. There are a number of reasons why mammograms can be difficult for people with disabilities. For example, some people with mobility impairments may have difficulty getting onto the exam table. Many people with disabilities have difficulty getting to and from medical appointments. This can be due to a lack of accessible transportation or because they need assistance from someone else in order to get to their appointment.
People with disabilities face both financial and non-financial barriers to access that may result in delayed detection and increased risk of poorer outcomes from breast cancer. Providers require education about working with women with disabilities.
Others may have sensory processing disorders that make it difficult to tolerate the touch and pressure of the exam. And still others may have cognitive impairments that make it difficult to understand and follow the instructions during the exam. Finally, some people with disabilities may not receive the same level of education as those without disabilities about the importance of breast cancer screenings and other preventive health measures. This can make it difficult for them to understand the importance of getting screened and make informed decisions about their health care.
These difficulties can lead to missed or delayed breast screenings, which can in turn lead to higher rates of breast cancer for people with disabilities. In one study, for example, women with physical disability had a 1.3 times lower odds of having a mammography done compared to women without a physical disability.
This is not a problem unique to breast cancer- many different diseases are less commonly screened for in those with both mental or physical disabilities. There are a few hypothesized and documented reasons for this, including inaccessible exam rooms/equipment, not having a car or reliable transportation, issues with the cost of care, a lack of external support systems, a lack of education on the importance of cancer screenings, or a decreased priority on breast screening when compared to managing a pre-existing condition. Regardless of the reason, however, in a UK-based study, disabled women were up to 50% less likely to get screened for breast cancer, while in the US, the CDC reports that there are 10% fewer women that have received a mammogram between 2008-2010 when compared to women without disabilities. In every U.S. state and territory, there is a disparity between disabled and non-disabled women in rates of mammography, with disabled women.
Given that mammography is one of the main ways that early-stage breast cancers are discovered, and generally speaking, the earlier a cancer is discovered, the more likely it is to be managed successfully, the fact that fewer disabled women/uterus-owners are getting mammograms indicates that they are at a greater risk for future complications related to breast cancer. Especially given that being a disabled woman, in general, will hinder access to healthcare, not only related to breast screening, the limited availability and accessibility of mammograms to disabled individuals often negatively impact the health of those affected.
Health Literacy and Breast Cancer
Health literacy is the ability to read, understand, and use health information. It is an important factor in understanding the importance of breast cancer screenings and other preventive health measures. Low health literacy often results in difficulty understanding and using health information, whether it is for one’s own care, or for that of a loved one. This can make it difficult for people to make informed decisions about their health care.
There are a few things that can be done to improve health literacy at the provider level: one is to provide clear and concise information about breast cancer screenings and other preventive health measures. Another is to use plain language when providing this information, and provide patients with opportunities to ask questions and get clarification about what they have read or heard. This can help ensure that they understand the information and can make informed decisions about their health care.
Improving access to breast cancer screenings for women with disabilities is an important step in ensuring that all women have a chance to receive the screenings they need. By removing barriers and providing clear and concise information, we can help ensure that all women have the chance to receive the screenings they need and improve their health. Publications such as the Disability and Health Journal, and regular, national-level screening programs such as the National Health Interview Survey are great sources of information on healthcare issues related to disability.
How Can Health Providers Support Someone with Intellectual and Developmental Disabilities When They are Getting a Mammogram?
There are several ways that health providers can make breast cancer screening more accessible for people with disabilities. One way is to use adaptive equipment that can help people with physical disabilities position themselves correctly for a mammogram. Another way is to provide support during the mammogram itself, such as by helping to position the person or by providing verbal cues. Finally, it is important to make sure that people with intellectual and developmental disabilities understand what is happening during the mammogram and why it is important to get one. This can be done by using clear and concise language, providing visual aids, and taking the time to answer any questions that the person may have.
If you are a healthcare provider who works with people with disabilities, we urge you to take advantage of these resources to make breast cancer screening more accessible for your patients. By doing so, you can help ensure that everyone has an equal opportunity to detect breast cancer early and improve their chances of survival.
What are Some Steps We Can Take?
There are some concrete steps that can be taken to make mammograms more accessible for people with disabilities. For example, accommodations can be made for people with mobility impairments, such as providing a ramp or lift to get onto the exam table. Sensory processing disorder can be accommodated by providing headphones or other noise-canceling devices to reduce the impact of the sound of the machine. And clear and concise instructions can be given to people with cognitive impairments to help them understand and follow what they need to do during the exam.
While these accommodations can make a mammogram more accessible, it is important to remember that they are not always perfect. For example, a ramp or lift may not be available at all mammogram locations. And even when accommodations are available, they may not be used properly or may not be enough to make the exam accessible for all people with disabilities.
What Resources are Currently Available for Someone Living with a Disability to Get Breast Cancer Screening?
There has been a growing focus on breast screening services for those living with a disability. The CDC has compiled a collection of state and national programs that aim to support those with disabilities in getting access to cancer screening. Here are a few highlighted programs:
“Every Woman Matters” - A multimedia exhibit highlighting the breast cancer journeys of Montana residents living with a disability. Additionally, the Montana Mammography Directory lists places within the state where mammograms can be found.
Mammography Accessibility Project- Created by the Oregon Office on Disability and Health, this web resource lists locations within the state where accessible mammograms can be found
The Right to Know Campaign- This CDC initiative aims at increasing awareness for the importance of mammography for disabled individuals within the U.S. It features breast cancer stories from disabled women, as well as informational resources.
Mammography Van- Run by Dana Farber Cancer Institute, the Mammography Van is a mobile, digital mammography location that visits communities in the greater Boston area to increase the availability of screening to those who might not be able to travel far for one. The schedule is regularly updated and can be found here.
Find a Mammogram Near You- The FDA created a website that allows you to search for a mammography location in your area. For those who are looking for a site, this is a great place to start. However, it is recommended that you call ahead to find out more details about the kinds of accessible measures available.
There are a Few Ways in Which People with Disabilities can Advocate for Breast Cancer Screenings:
- Firstly, it’s important to be aware of the resources that are available to you (which we listed above). Knowing what is available to you and how to access it is key to ensuring that you get the care that you need.
- Secondly, reach out to your local disability community and see if there are any initiatives or programs already in place that you can get involved in. If not, see if there is interest in starting something up!
- Finally, spread the word about the importance of breast cancer screenings for disabled individuals. Talk to your friends, family, and peers about why this issue is important too.
Take Action
As we’ve discussed above, while mammograms are the most common breast screening for cancer, they can be difficult or even impossible for some women with disabilities to get. This can lead to problems such as late detection, decreased survival rates, or cancer-related death. We know that early detection saves lives, which is why it is so important that we work towards increasing the accessibility of screening tools for those facing disabilities. There are many organizations working to make breast cancer screenings more accessible for all women, but there is still more work to be done.
We hope that these resources explain the intricacies of disabilities and breast cancer screenings a bit further, specifically in regard to your breast cancer journey. If you are a disabled individual or know someone who is, we urge you to take advantage of the resources that are available to you. Getting a breast cancer screening is an important step in taking control of your health. And for those looking to get involved in the movement to improve access to screenings for disabled individuals, there are many ways to get involved and make your voice heard! Together, we can make sure that no one gets left behind in the fight against breast cancer.
Do you have a breast cancer story and experience living with a disability that you would like to share? Please reach out to us – we would love to hear from you!
For more information and resources on breast cancer, please visit our website at SurvivingBreastCancer.org.