Monica Bryant, a cancer rights attorney, is part of the four-woman team behind Triage Cancer.
Prostatepedia spoke with Ms. Bryant about legal and employer issues facing prostate cancer patients.
Are there some common legal issues for cancer patients?
Ms. Monica Bryant: Employment issues are an important topic that comes up frequently. We want to empower people to recognize that the law is a tool that they should use for their benefit. We don’t simply advocate that people sue their employers, but we want to get to people before there is an issue.
For example, in the United States, we have a law called the Americans with Disabilities Act (ADA). One of the things that the ADA provides for people with a cancer diagnosis is something called a “reasonable accommodation.” For someone who may be suffering from either long-term or late-term side effects and who wants to work through treatment or return to work after treatment, a reasonable accommodation allows them to get some assistance to remain in the workplace. The average American doesn’t necessarily know about that.
They usually don’t need to know about it, right?
Ms. Bryant: Right. Or they’re into their treatment, they haven’t accessed reasonable accommodations, and then their job performance suffers, so they are let go. We see such a scenario often where people feel they’ve been discriminated against. But when we peel back the layers, it’s not necessarily discrimination, it’s that their job performance has suffered, and they haven’t accessed the benefits that might be available for them.
We want to give people this information so that they can go to their employer empowered and access resources available to them, keep their jobs, and keep being the valued employee they want to be. People shouldn’t suffer as a result of not knowing what’s out there.
What kinds of financial issues do people experience?
Ms. Bryant: That’s an issue across the board. We look at finances in the broadest terms possible because we know that it’s not just about medical bills, even though that is obviously a huge factor.
The issue starts with the health insurance piece. If someone doesn’t have an adequate health insurance plan and their out-of-pocket costs are skyrocketing, that’s going to have a direct impact on their finances. If someone isn’t accessing workplace protection so that they can continue to work, that has a direct impact on finances.
We find that a lot of people think very narrowly about finances, focusing only on financial assistance for copays. While that’s definitely an important part of the conversation, we want people to think more globally. That way, we can avoid some of the pitfalls.
Are finances more of an issue, for example, for people who have prostate cancer? Or are these mostly issues people who aren’t working or who are on fixed incomes face?
Ms. Bryant: We see financial issues from all different types of people, from all walks of life. Even people who would probably describe themselves as middle-class prior to a diagnosis tend to suffer what has now been termed the financial toxicity of a cancer diagnosis.
If someone can’t go to work, works for a small employer, and doesn’t have access to the Family and Medical Leave Act (FMLA), they lose their jobs. Even if they have access to the FMLA, it’s unpaid leave.
For individuals who have lower incomes or who might not have a job that offers health insurance, financial toxicity tends to be more severe. We see this severity in younger adults because they tend to have smaller savings and be less secure in their careers. But it really isn’t limited to any particular segment.
Even if someone is middle class (and I’m not sure how we define that anymore) and has an employer-sponsored health insurance plan, if they’re out of work for more than 12 weeks they could lose their job. Then they have to figure out what to do for health insurance. If they don’t pick an adequate plan, they can exhaust their savings and tap into retirement. Maybe they can’t pay their mortgage. It can snowball very quickly if someone doesn’t understand how to use all of the different parts of the system.
We talk about finances in a global manner because there are so many pieces to the puzzle and each piece is important. Disability insurance is another very important piece. And very few people understand what disability insurance even is and how it can be useful after a diagnosis.
I’m sure most people don’t really understand what it is until they actually need it. And then it’s too late.
Ms. Bryant: Right. And in this country, if you don’t have disability insurance prior to your diagnosis, it can be very challenging to get once you have a preexisting condition.
That makes sense though, doesn’t it?
Ms. Bryant: I would like to see some more options for folks when they’re a number of years out of treatment, especially since so many people worldwide are diagnosed with cancer and since it has become more of a chronic disease. Healthcare industries need to adapt to this change.
That’s especially true with prostate cancer. Most men who have prostate cancer can have it for 10 to 15 years. They die with prostate cancer, rather than of it.
Ms. Bryant: Right. So to deny disability insurance for 15 years to people after they’ve had that diagnosis is extreme.
Are there other issues that come up specifically for prostate cancer patients?
Ms. Bryant: Many people request conversations around intimacy and sexuality. That’s a hot-button topic because it’s challenging to talk about. One of the experts we have in that area says it’s harder for men to talk about those issues than for women to talk about them. We get a lot of traction when we offer content around intimacy and sexuality. Conversations about nutrition and exercise are particularly well received, as well, because people acknowledge that we can improve overall health, but there’s a lot of misinformation out there. The internet is both a wonderful thing and a horrible thing at the same time.