Access to Care for Metastatic Breast Cancer Patients
Vital Options International presents Advocacy in Action: Metastatic Breast Cancer, bringing together the influential leaders of the cancer advocacy community to address core issues that impact metastatic breast cancer patients today.
Joining Selma Schimmel as co-moderators are Elyse Spatz Caplan, Director of Programs & Partnerships at Living Beyond Breast Cancer, Shirley Mertz, Board Member, Metastatic Breast Cancer Network, Maria Wetzel, a research advocate who works with the National Breast Cancer Coalition and Musa Mayer, an advanced breast cancer advocate who runs the website, AdvancedBC.org.
This video also features Dorothy Warren, Peer Counselor (Y-Me Breast Cancer Organization) and Sandi Stanford (Alamo Breast Cancer Foundation).
Advocacy in Action at the 34th Annual CTRC-AACR San Antonio Breast Cancer Symposium was made possible by support from:
VIDEO TRANSCRIPT:
Selma Schimmel, Founder & CEO, Vital Options International:
There’s many of us that will live with cancer and have to coexist with this disease, and the idea that we can give a voice and now faces to the issues behind living with metastatic breast cancer is the goal of Advocacy In Action.
Musa Mayer, Advanced Breast Cancer Advocate, AdvancedBC.org
As I think we are all acutely aware, not everybody has equal access to treatment or to information about treatment or to ways of negotiating the health care system or to insurance or to transportation to treatment. And the myriad of ways that have a profound influence on how a woman diagnosed with metastatic disease goes about getting the treatment that would confirm not only the longest survival, but also the best life during the time that she has the disease.
Shirley Mertz, Board Member, Metastatic Breast Cancer Network:
If you try to understand what it is like to live with metastatic disease- you’re coming to grips with your own mortality, you’re seeking tips that hopefully will have good response for you, you’re dealing with family issues, maybe children, your own partner, your husband, wife; but then, you say ‘oh, if I can find the right treatment will my insurance pay for it?’ And then before the new healthcare law there were lifetime limits, which I had never heard about and I’m an educated lady. But I never paid attention that closely to my healthcare policy, but you have lifetime limits, in some places there are annual limits. I’m sure all of you are very aware if you’ve ever had an experience with breast cancer, that breast cancer treatments are enormously expensive. So it’s, ‘Will I find the right treatment? Will my insurance pay for it? And how long will that last?’ And, I guess the last point is, in this current climate, when people are saying we have to get a hold of health care costs – and there was a session here at San Antonio about that – that is, I can’t tell you the fear in my gut when I hear that because I believe that one of the groups that will be cut back will be people who have advanced disease because our treatments are so costly. So yes, do I want new treatments- absolutely. But will, I think the key word was, will I have ‘access’ to the treatment if it does exist? And there is no ‘yes, definitely’ to that question.
Dorothy Warren, Peer Counselor, Y-Me National Breast Cancer Organization
I’m a peer counselor on a hotline and we get calls throughout the United States regarding metastatic breast cancer triple negative, DCIS… But I have one question to this panel and you can comment- Shirley, you talked about getting a second opinion, what about that individual who has no health insurance, they can’t get a second opinion, they’re either working or dealing with the federal program where they go to a clinic, give them medicine, give them chemotherapy, they can’t ask questions, they have to go home, they cannot change doctors, they have to live with what one doctor may tell them what to do. Palliative care- they don’t understand anything about palliative care. And we are in a society where a lot of women and men have lost their jobs; they don’t have health care. So this is ideal what I’ve heard this morning, but what about if you don’t have any of this? And Ginny spoke about inflammatory breast cancer, people are living longer. Shirley, you talked about early detection for mammograms. Some of our callers, they don’t have access to go in for help.
I just wanted to get your opinion- not that I’m… I just wanted to know, how do you feel about that? Because this is a very, very important topic that we have to address. It’s ideal to say you can talk to your doctor, change doctors, I changed doctors because I have health insurance. But what if you don’t have those things?
Selma Schimmel, Founder & CEO, Vital Options International:
I don’t know how it is throughout the rest of the country, I can speak for Los Angeles, and this is one unique thing that we have and that is… and it sounds, our county USC hospital and our UCLA affiliate hospitals that are also part of the county system – the one benefit that patients, not only breast cancer patients, have been about to have there are that the same academic researchers that see patients in the private hospital are involved with the patients as are the resident programs in the county hospitals, the VA hospitals; and I don’t know if that works in the rest of the country. But I’ve been impressed with the patient referrals knowing ‘gee, the very researcher that I would be sending someone to at USC in the private Norris center happens to be maybe, or UCLA, being seen at the state or county hospital and I don’t think that is uniform. These patients, they have to wait a long time, it’s not easy, it’s a much more personal clinic setting but they are getting access to that level of medicine- and I don’t know if that works everywhere.
Dorothy Warren, Peer Counselor, Y-Me National Breast Cancer Organization
I think it’s different. It just depends on the protocol of the state. So I just…
Elyse Spatz Caplan, Director, Programs & Partnerships, Living Beyond Breast Cancer:
Well I think that is what you just touched on and I know that we also get calls on our help line. There are many city, state and government resources. That said, they’re not always easy to access or to get referrals to. So I think there may be resources available at the state level for people who are uninsured or under insured but we do hear over and over how hard it is to work with that system. It’s there but it’s hard to get in, or the delays and the wait time are very frustrating.
Musa Mayer, Advanced Breast Cancer Advocate, AdvancedBC.org
One of the things that every American family should know that is dealing with this disease is that a diagnosis of metastatic breast cancer will qualify you for social security disability insurance, which means that you are eligible for a payment retroactive to your diagnosis, but more importantly, that you will be eligible, there is a delay, for Medicare; and Medicare does cover high quality care for metastatic breast cancer. Now this isn’t an option to people who have not worked this required number of quarters; this is the great limitation. Those people, depending on their means, may have to rely on Medicaid or on clinics such as those you are talking about. And definitely that is not optional, and that is presumably not optimal; and that is presumably one big reason why we see this difference in survival with disadvantaged populations, who have much higher rates of not being insured.
Maria Wetzel, Breast Cancer Research Advocate, National Breast Cancer Coalition:
And I think what advocacy organizations can do is compile a list of those resources state by state, even county by county. Because again, if you live outside a city area, that becomes even much more of a problem of finding an oncologist. So, but I think that is one thing we can do is make sure that on a hotline we know where to send these people because usually there is some help. Granted, we do not have equal quality health care for everybody in the United States.
Dorothy Warren, Peer Counselor, Y-Me National Breast Cancer Organization
Well, I mean we have a database with support but we need more because so many people are utilizing that same support, so as an advocate I think we need more participation from other organizations. Thank you so much.
Sandi Stanford, Director, Alamo Breast Cancer Foundation
When we do our outreach programs we screen maybe 40 to 50 women at a time 4 times a year usually through the BCCS program or if they don’t qualify, then we pay for the mammograms. Because we are a largely Hispanic population here, the women are diagnosed a lot later and they are diagnosed. We are very lucky that not only in Texas, can we get the women involved in the Medicaid breast and cervical cancer program, but also in our county we have a county health care system. So, you pay as you go, it’s not an insurance policy, and you don’t have to pay all the time. You pay as you go and it depends on your income. So, we also have resources with all the other groups in town; so, what we do is collaborate. And I think Shirley said it, Maria said it, one of the most important things that we need to do, not only with early breast cancer, but with metastatic, is to collaborate. Like Shirley was saying, get in with the early and go in with the late- if the people with early breast cancer know what can happen, they will be more involved, I think, and want to find out why do some women… like, I’m 17 years out, 5 and a half centimeter tumor, stage 3 and I’m still here, double negative. So, it’s like, why did I not have a relapse, yet my friend Jenna, who was sitting here, same prognosis as me only she was stage one is now metastatic. So, we need that research, we need to do that. So, hopefully through collaboration, the advocacy groups can get this going and not only federally, but statewide and locally also, with our local cancer groups.
END OF VIDEO