Kristie L. Kahl: What would you say is the biggest challenge right now in metastatic breast cancer?
Jamil Rivers: The biggest challenge for metastatic breast cancer is the lack of metastatic breast cancer funding and research. It boggles my mind because metastatic breast cancer is the breast cancer that you die from. You don't die from breast cancer in the breast. Metastatic breast cancer research should comprise at least 50% of all breast cancer funding. We find that even now, with early stages, if you do everything perfectly, and you are in remission, that you still have a 35% chance of becoming metastatic. And so to me, it just makes sense for us to learn like from other illnesses like HIV/AIDS, where they focused on what was killing people, and now it is a chronic illness. So, I do think that we need to do that same thing with metastatic breast cancer.
Kristie L. Kahl: Are we doing anything to try to address the funding issues?
Jamil Rivers: METAvivor has a grassroots effort on the ground, state by state talking to the government, Congress and NIH to increase that funding. I think we've been operating on this old methodology and now we have to catch up with the science and understand that just because you might catch it early or detected early, which is important, also focusing on what is creating that metastasis and the metastasis is what you die from. And that's all we need to focus on to make sure that we can control it for the long term.
Kristie L. Kahl: Are there any other disparities that are associated with metastatic breast cancer that we can discuss?
Jamil Rivers: There's also the oral parity issue that does create a disparity. When I say oral parity, there are certain treatments that are not covered because of our health care system structure in our country where if it is a drug, it's considered to be a prescription. If it's treatment in the medical setting, such as IV chemotherapy, that is covered more so than oral treatments and, now, most of the most innovative drugs are oral treatments. So if you are on Medicaid or Medicare and in a state without oral parity, then that can create an exorbitant amount of out-of-pocket costs and that creates a barrier for patients to have the best treatment for them.
There are also some health insurance coverages, junk plans that require step therapy. So meaning in order for you to get access to this drug that actually might be the best one for you, we need you to fail on that drug before before you get the drug that's actually best for you. That actually can cause serious implications to a person who is dealing and living with metastatic breast cancer.
Also, access to clinical trials and access to diagnostic screening and genomic testing. These are issues where you might not be able to afford some of these tests or the out-of-pocket costs can range from $300 to $1,000. That is going to definitely be a barrier to you. Getting that screening, getting that testing in order to hone in on that best care for you.
We have passed it and various states at the state level for those tests to be provided, including ultrasounds and MRIs and having access to that for patients that have family history or dense breasts and not able to get the initial screening accuracy with a mammogram. But we really need that nationwide and not just state by state.
Another big factor is just the barriers to access to clinical trials, access to particular treatments, understanding that education barrier that also is a contributor to disparities. We have a myriad of issues when it comes to making sure that patients have that comprehensive model, where it's not just the medical access. That's definitely a big issue.
Nutritional factors, social economic status are all things that are a combination of factors that are impacting a person staying on that continuum of care. When you notice that there are different outcomes and different communities, in particular in the metastatic and also in Black and Hispanic communities. It's because of these other factors that are coming into play.
Kristie L. Kahl: How can we help to connect patients so that we can address some of these barriers to access to care?
Jamil Rivers: We're finally starting to understand through research and evidence-based studies that all breast cancer is not the same. All patients are not the same. So, we can't really have a trickle down, wide sweeping brush. We have to understand that rural communities are more impacted by disparities just due to travel issues, lack of the latest treatments in their particular area, having those challenges of getting access to clinical trials and rural communities, not having nutritional resources that can support that wellness path that they're on when they're taking care of their cancer, access to clinical trials. Usually, Black patients represent only 3% of the population within a clinical trial and that definitely has to increase. And then just having the travel barrier, meaning that it's usually 60 minutes or more for them to reach their cancer care, and also socioeconomic issues where 70% of Black women are usually the head of their household and single and are the primary breadwinner and have children. So, transportation is definitely an issue. Or there is the issue, “I'm going to take off for three weeks in order to focus on cancer care,” and a lot of times that's not an option, so that creates a barrier. We have to think about these different issues when it comes to lack of PTO, lack of family leave transportation, childcare, access to clinical trials, nutrition. These are all different factors that could be embedded and created in a lot of our cancer care systems at the community level.
Kristie L. Kahl: Does METAvivor have any resources that we can offer to patients?
Jamil Rivers: We have our peer-led support which we are practically in every state where we can connect folks to access and resources on the ground. We do take a lot of calls in order to guide folks through that process. And we're trying to develop even more support systems so that we can connect people with resources when it comes to clinical trials and support resources in order to deal with some of the barriers that come up when you're dealing with metastatic breast cancer.
Kristie L. Kahl: If there's a woman that's facing one of these disparities what is your biggest piece of advice?
Jamil Rivers: I would say check to see if there's an oncology social worker at your cancer center, and be open, talk about all the issues. And don't wait until you're in a crisis in order to receive that support. Preemptively receive that support so that you can think about what different challenges you might be facing because this is a long-term game. This is a long-term journey. You're going to be on this path for quite a while. So you have to think about structuring your life: having kids, transportation, managing your job, or maybe not working anymore. What does that look like? You should factor in that full picture so that you have all the support in place to make sure that she can go ahead and tackle your cancer the best way that you can.