Talking About Prostate Cancer Treatment Costs With ZERO360
Last updated: January 2022
We talked about the costs of prostate cancer with ZERO360, a free program that helps people afford treatment. ZERO360 assigns you a case manager to help secure financial support, resolve insurance claims, and enroll in benefits.
We asked what costs you and your family should consider both before and after a diagnosis. We also asked what questions come up most. ZERO360’s Ilana Ostrin and Shelby Moneer helped us break it down.
Potential costs to consider
There are many doctor appointments on the path to getting diagnosed, confirming the diagnosis, and choosing a treatment. You may see several different types of doctors, oncologists, and urologists.
Travel and transportation play a role in how often treatment occurs. This can be especially true for people in rural settings or who live far from treatment centers.
“Travel can be an expense,” Ostrin says “Especially if your treatment center’s pretty far, or if you need to stay somewhere overnight.”
The FDA recently approved Orgovyx® (relugolix), the first oral hormone therapy to treat advanced prostate cancer. This provides a different kind of treatment option. You can take the pill at home instead of having to always travel to get treatment.
Recovery and treatment side effects
Side effects of prostate cancer and its treatments can affect your body, mind, and sexual health. Common expenses can include:
- Diapers or specialized underwear to deal with incontinence
- Pelvic floor therapy to help strengthen muscles
- Sex toys and meeting with a sex therapist to understand what your new sex life is going to be like
- Therapy for coping with the emotional toll of prostate cancer
It can be difficult to deal with the fears of a life-threatening disease and side effects like hot flashes or erectile dysfunction, Moneer says.
“These side effects are just really hard to talk about,” she says. “And you certainly don’t want to share, but your mental health really needs you to share them.”
Prescriptions and diagnostic tests
When a drug or tool is approved by the FDA, it will typically be covered by insurance at some point, Moneer says. But sometimes it can take months after approval for coverage to start. Insurance companies may not know about the approval right away, or doctors may not know how to use a newly approved tool.
“It takes so much time even once something’s approved to really get down into the hands of patients with a reasonable means to access it,” Moneer says.
There is another reason prostate cancer drugs can be so expensive, too. Many are specialized, meaning there are fewer cheap generic versions, Ostrin says.
Thankfully, Moneer says, many companies FDA-approved drugs have financial resources available to keep you on treatment. You need to apply and go through several steps qualify for these. Still, it helps so that you do not have to take breaks if finances become an issue.
Treatment costs add up. We have put together a full list of potential costs to consider:
Lesser-known costs to consider
Some hidden costs can include:
- Diet: sticking to a special diet for prostate cancer treatment, or buying more expensive and specialized foods
- Household chores: paying someone to clean your house if you cannot do so or are traveling for treatment
- Fertility treatments: getting your sperm saved, especially for younger men with prostate cancer
- Legal expenses: making sure you and your family are covered financially and your rights are not being violated
Legal expenses, in particular, can be a surprise. You may need a lawyer to get accommodations at work or obtain life insurance. Younger men diagnosed with prostate cancer should consider other things, like making a will.
“If a 37-year-old patient has never once before thought about his will, all of a sudden he needs to,” Ostrin says. “So definitely legal expenses add up.”
Sacrifices families may have to make to afford costs
Some families may need to sell cars or mortgage their homes. Caregivers may need to get a second job on top of their caregiving to bring in more money. Kids going to out-of-state colleges may have to move back home or go to an in-state school to save money.
“Cancer can be toxic to your whole financial life,” Ostrin says.
She recalls talking to a man who had good insurance and a spouse with good insurance. But because of his cancer treatment, they spent their entire savings. This was a reminder that costs can bring even financially well-prepared families back to square one.
Most frequently asked questions
Cost of medicine
The cost of medicine is almost always why men and their families turn to ZERO360's patient support program, Moneer says.
"I personally find it so frustrating, especially because these are drugs that the FDA approved for the treatment of prostate cancer,” she says. “And for the most part these men – not all, of course, but the majority – have insurance. And the fact that you have insurance and you're trying to get on an FDA-approved treatment and not having access is just appalling."
Enrolling in Medicare and Supplemental Insurance
Seemingly overnight, you are diagnosed with cancer, and your insurance gets much more complicated.
"Insurance questions are highly common, as well as turning to Medicare and Medicaid and navigating that new process," Ostrin says.
More specifically, many people have questions about enrolling in Medicare Part D, the prescription drug benefit. Sometimes ZERO’s case managers also help you enroll in new insurance or added insurance programs. These include pharma co-pay programs.
How to minimize costs
Know what costs to expect and the resources available to you before you need them. This can help avoid or minimize out-of-pocket expenses.
Reach out to patient support programs before you need them
Get ahead of the curve by contacting assistance programs and navigation services before you need them, Moneer says. You can also contact case managers at treatment centers and hospitals to research your options.
Many people do not realize programs like ZERO360 exist. People often think their insurance will take care of costs.
“They don't realize the hot water they are in financially until it's too late," Moneer says.
Understand your current insurance benefits
As soon as you start talking to your doctor about a baseline prostate-specific antigen (PSA), begin to research your insurance benefits. This way you can have a good understanding of what you might be up against, Ostrin says.
Your stage of diagnosis and whether the cancer is localized or has spread outside the prostate will significantly impact treatment options. And, in turn, insurance coverage, maximums, and other lesser-known costs.
Talk about your health
Bottom line, talk about your health – not just with your partner, but with friends and other family members. Sharing resources and raising awareness can help lift the weight of loneliness. It also has the potential to save someone's livelihood. Do not be afraid to ask for help.
How ZERO360 can help
"Our case managers are amazing. They can solve so many situations for so many people. We see so many scenarios – people who need help affording hotels to be closer to their treatment center, I mean, everything you can think of – and they make it happen for these people.
“So I would say never be afraid to call,” Ostrin says. “I don't think there's any barrier to entry. There's not. See what they can do for you, because surely they can do something."
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