As many of us know, some of the most effective ways to fight breast cancer involve preventative testing, screenings and medicines.
Simple enough? Not really.
Financial concerns and barriers often deter women from all walks of life from getting those life-saving interventions. What those financial obstacles are exactly hadn’t been addressed until Ohio State’s Tasleem Padamsee discussed it during in-depth interviews with Black and white women at high risk of breast cancer for a recent study.
It’s part of a larger project called the Daughter Sister Mother Project: Empowering Women and their Healthcare Providers to Fight Familial Cancer. Padamsee discussed what her team discovered and how women, insurance companies and even health care providers can address these issues.
We started this research because although there are many medical interventions designed to either reduce the risk of cancer or detect cancer, there hadn’t been much research about how people cope with being at high risk and how they make decisions. Our objective was to treat risk as an issue in and of itself and to understand how women cope with risk, how they get information, how they make decisions.
This research found that financial barriers are affecting access to all kinds of medical care related to cancer prevention and that it’s relevant to a broad swath of women in broad ways.
First, the financial constraints are not affecting just women who lack insurance or have low incomes. We found it to be relevant across the financial spectrum. Even women with good insurance and comfortable incomes can struggle with the financial aspects of cancer prevention.
Other issues have to do with how women think about financial demands. When women are thinking about whether they can afford a procedure or test they aren’t just thinking about how much it costs. They’re thinking about how that cost fits into broader financial demands: grocery bills, childcare bills and everything else.
Financial considerations also involve women’s experiences with insurance company regulations. For instance, if the insurance company isn’t particularly forthcoming about what they do and don’t cover, that leaves people in the position of having to guess what is covered or not covered, what’s covered 100% or 50%.
Also, quite a few women worry about future discrimination related to genetic testing — that if they are found to have a predisposition to a condition like cancer, they worry they may not be protected against insurance discrimination or life insurance discrimination in the future. Even where the law says you can’t discriminate, there are concerns the law may change. Or — women worry — what if there’s some other thing I didn’t think of that’s not covered by the law?
The fact is that financial constraints are profoundly impacting people’s decisions about their health care. So how could health care providers better serve these women? Perhaps providers need to be more comfortable talking about the financial components. Maybe they could have a person there to talk to; have pamphlets available; or the providers themselves could receive continuing education to think more about costs. It’s not about health providers being financial counselors, but opening the door to concerns about how financial realities can be addressed.
There are also regulatory changes that could be very effectual. Federal policy that creates long-term guarantees against genetic discrimination could remove a major barrier for many women.
Also, insurance companies are not very transparent. Putting in place legal requirements that insurance companies disclose their full benefits packages would be really helpful. It would take away a lot of the guesswork and open the door for advocacy if we find that there are medical supports people need that insurance companies aren’t covering.
First, anybody can be at high risk of cancer. It can happen in any social group. And there are a number of things we can do about it. Cancer isn’t what it used to be: a death sentence. We have excellent treatment outcomes for many cancers if they are caught early.
The second thing is to talk to your health care provider, particularly if you have cancer cases in your family history. It’s not currently the case that all primary care providers will talk about cancer risks with patients. So if a patient says, ‘I have cancer in my family; is there anything I should be doing?’ that is often enough to get the conversation started. And if your provider doesn’t feel comfortable having that conversation, you can ask to be referred to a specialist.
The third thing to know is that there are a variety of supports out there for high-risk people. It’s OK to be scared or anxious. But support exists. We want more people to take advantage of those supports and cope with these risks in ways that will decrease their chances of getting cancer or dying of cancer. Asking for information from your provider is a great way to start getting connected to that support.