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.
Dr. Douglas McNeel is a Professor in the Department of Medicine at the University of Wisconsin-Madison and Director of Solid Tumor Immunology Research within the UW Carbone Cancer Center. Dr. McNeel focuses on prostate immunology and the development of antitumor vaccines as a form of prostate cancer treatment.
Can you give us an overview of vaccines for prostate cancer: which are available now and which are still in development?
Dr. McNeel: If a person has prostate cancer, he usually has surgery or radiation therapy to remove the cancer. These initial therapies cure a majority of patients, but about a third of the time, the disease comes back or resurfaces. We can usually detect the recurrence at a very early stage with a PSA blood test.
Our original thought was that the point of recurrence is the time to intervene, to create a tissue-rejection response.
You can’t really do without a normal kidney. The same is true of the liver.
But you can do fine without a prostate. So if we can create a rejection response to remove any prostate tissue, whether it’s cancer or not, that would be okay.
That was our original thought. The idea with vaccines is to teach the host to generate an immune response that will recognize and destroy cancer cells. But this is a challenge to treat existing tumors with vaccines. With infectious disease vaccines—what we normally think of when we talk about vaccines—we get an immune response that then protects you later on. We call them prophylactic vaccines. But we don’t treat active infections with vaccines. We treat them with therapies that target the bug directly or infuse in an immune system like an adoptive therapy approach.
With cancer, we see the same kinds of hurdles. What we know from animal models is that there are a number of cancer vaccines that can protect animals from cancer, but to get the best response against existing cancers, you have to start when tumors are small and barely detectable. That has been a challenge in pushing those vaccines into human trials.
We’re also learning that when you generate an immune response by means of a vaccination, the cancer can put up a big barrier very quickly to fight against it. Our thought process on vaccines is currently in the midst of changing given that kind of information.
A number of cancer vaccines have been studied over the years. Most of the effort has not produced anything, because we have been looking at vaccines alone, usually in patients with more advanced cancers.
There has been one exception. Provenge (sipuleucel-T), which is a vaccine targeting a protein called prostatic acid phosphatase, was approved in 2010. In this approach, patients have blood removed and their antigen presenting cells are spun out. Then the target of the vaccine, this prostatic acid phosphatase protein fused to an immune-modulating drug, is put together in the lab in the culture dish. The education of the immune system akes place in the lab, if you will. Those cells are then shipped back and infused back into the patient two or three days later. That process is cumbersome, but the approach was shown to be effective.
One large trial led to its FDA-approval. But there were other supportive Phase III trials showing that people who got the vaccine versus those who got a placebo vaccine did better and lived longer. It was a challenge rolling out Provenge (sipuleucel-T) because we don’t see PSA declines with it. We also don’t see changes in the tumors on scans, but we know that men with advanced prostate cancer, in general, live longer if they get that treatment.
Prostvac is an approach that has been in Phase III trials up until recently. Unfortunately, the Phase III trial was deemed to not have met its primary endpoint in September 2017. It did not show that people lived longer. It’s unclear if Prostvac will be developed or not.
Prostvac is a viral vaccine. There is one virus that encodes PSA and then a separate virus. People are immunized with one virus coding the PSA and then boosted with the separate virus. The idea is to use viral vaccines to focus the immune response on the target protein PSA.