Pink Ribbons do not replace education: a Conversation with Susan. G. Komen Greater Central and East Texas
October is Breast Cancer Awareness month. There are features all over the internet about brave survivors, heartbreaking stories of folks who’ve passed, and along with the changing leaves and weather; there’s a hue of pink in all corners of our life.
And yes we’re in the last days of the month. And yes, I reached out to Susan G. Komen because it was October. But after a thoughtful conversation with Elizabeth Green of Susan G. Komen Greater Central and East Texas, an Impact Hub Austin member, I realized that pink ribbons do not replace education. And in retrospect only highlighting the effects of breast cancer in October seems honestly a bit silly.
There are a lot of misconceptions, barriers, and things we can learn about breast cancer from our local Komen affiliate.
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Mindy Morgan Avitia: Can you tell me more about the mission of Susan G. Komen Greater Central and East Texas?
Elizabeth Green: What’s unique about Komen is that we attack the disease on all fronts. Komen’s mission at its core is to saves lives by funding education, screening, diagnostics, treatment and survivorship as well as research to improve treatments and ultimately find cures.
Komen Greater Central and East Texas is taking that mission and focusing it on the 58 counties we serve.
MMA: That’s a pretty big area to cover.
EG: That’s pretty recent, actually. Until January 2019, we were two smaller affiliates: Komen Austin and Komen East Central Texas. Early last year we decided to make a bigger impact. So in January we merged and expanded into Komen Greater Central and East Texas. It’s been interesting adjusting to that larger scale. Our goal is to raise as much money as we can and then grant those funds to nonprofit healthcare organizations across our service area to provide the continuum of breast cancer care, from awareness to survivorship, to as many people as possible.
MMA: So would you say Komen is more of a grantmaker than a service provider?
EG: Yes. While we do not provide direct health care service, we do have resources available to help. We have a hotline that you can call for help and support navigating the healthcare system. People often know they need to go in for a mammogram, but they don’t always know where to start. Or they’ve received results from a mammogram that needs follow-up and they’re unsure of how to move forward. The hotline supports a variety of needs. We support people who are uninsured and underinsured and don’t know where to go. We have a prescription discount card that anyone can use to help make any medication, not just those for breast cancer, more affordable. We also provide Patient Treatment Assistance grants to breast cancer patients who qualify.
For the most part, we are a fundraising organization that provides strategic grants to local service providers. 75% of the money raised stays local and supports local providers. And the other 25% provides grants globally for research.
MMA: Is that so it’s centralized research that you’re working towards?
EG: Right. But also mainly because those grants can be so expensive. One researcher in a year might need $500,000. So it just makes more sense to pull that together at the national level.
MMA: You mentioned you fund local service providers. Are those doctors or community health centers? Or both and…?
EG: All kinds of things. For example, we support mobile mammography units that go to rural areas in East Texas and bring mammograms to where people are. It’s literally mammogram equipment in a van. East Texas in particular has rural areas that don’t have easy access to facilities.
Another of our grantees, Latino Healthcare Forum, they are focused primarily on educating the Latina community on the importance of getting mammograms. Hispanic women are less likely to get screened than white women are.
So it’s really everything from that to Meals on Wheels of Central Texas. They obviously provide meals but also in-home care for breast cancer patients going through treatment.
MMA: I’m still thinking 58 counties in Texas, wow. That’s bigger than the state I’m from! But even though this is a big region to cover, what are some barriers you see in access to care?
EG: A lot of them are very similar to what we experience nationally. This office used to serve the five counties around Austin until earlier this year. That was an urban area where people had more access to transportation and lived closer to facilities. That doesn’t mean everyone has transportation or the money to pay for it but access to facilities was there. In the upcoming grant cycles, we’re certainly going to see more delivery systems to rural areas. It’s actually in the grant guidelines that these are now priorities for us.
A lot of what we face here is very similar to what we’re facing across the US. The main barrier to care is not having health insurance. Many people are uninsured and struggle to afford $200 for a mammogram. And many women avoid screening because they fear bad news. About a third of women do not get a mammogram in the US. So when we hear people say “we don’t need more breast cancer awareness,” we’d answer that we definitely need more breast cancer education. And more advocacy on behalf of people getting screened. Many people don’t have the money to go do it.
It’s mostly about the cost. Some other barriers are geographical access and language barriers.
There are other reasons why people don’t get regular screenings. For example, in the African-American community, there’s a long history of distrust for the medical community, and for good reasons. We want to help repair that relationship.
MMA: I think when some people hear rural they think of John Steinbeck and small farmers out there. But farmworkers are one of America’s most vulnerable populations and are mostly monolingual Spanish speakers with limited access to care.
EG: Providing resources in Spanish, as well as funding outreach organizations who see people in this particular population is important and certainly something we strategically look to accomplish through our grants program.
We also do a lot of advocacy. For example, up until last month in Texas, you’d have to pay some out-of-pocket cost (even if you had insurance) for a diagnostic mammogram. A diagnostic mammogram is advised when a regular screening comes back with some warning signs. So the diagnostic mammogram is a preventative measure; it’s ridiculous that it wasn’t covered.
So a bill that we supported in Texas just went into effect in September. The Texas bill, HB170, removes those out-of-pocket costs for diagnostic mammograms. We still have the insurance barrier, but at least if you have insurance you’re not paying anything for that diagnostic test.
MMA: What are some stigmas or myths, if any, about breast cancer have you seen?
EG: Oh, so many! People have a lot of assumptions about what can cause breast cancer. I’ve heard things like using antiperspirants, or having your cellphone in your bra, or even wearing a bra with underwire can cause it. There are no definitive links to breast cancer and those actions.
The most alarming myth some people believe is that if they test negative for the BRCA mutation, then they don’t have to get screenings and they don’t have to worry about being diagnosed with breast cancer. They’re in the clear. And that’s just not true. And really worrisome.
MMA: Oh, BRCA is the breast cancer gene?
Well, yes. But the BRCA mutation is falsely called the “breast cancer gene,” everyone has the gene, but when it mutates people are at a higher risk for breast cancer.
Another common misconception is that there’s one cure for the disease. Komen used to have the tagline “race for the cure,” because when the organization was founded in the 1980s, it was believed that breast cancer was one disease. We’ve since learned it’s many different diseases and will require multiple cures. It’s why research requires so much funding.
MMA: This is my favorite question; how can women be more empowered to self-examine themselves and check for early signs?
EG: This is my favorite question, too. Because this is something that I believed extremely important before I started working at Komen. What has developed recently is that actually, self-examinations are not a good way to screen for breast cancer. It’s not that you shouldn’t pay attention; I can’t stress that enough. It’s important for people of all genders to know our bodies; and know what our breasts normally look like. And definitely always see a doctor if something seems off.
Self-examination is tricky, though, because by the time you can feel a lump, you are probably at stage 2 or 3. And the survival rate for that is considerably lower than if you’d been diagnosed at stage 1. So once you’re 40, you want to be getting a screening every year. Self-examining can also lead to a lot of false positives. Some people have very dense breast tissue, and it’s hard to tell that apart from a lump with just a physical exam. Mammograms are much more accurate in detecting.
MMA: Why is 40 the recommended age?
SGK: Certainly younger people can be diagnosed with breast cancer, but it’s highly uncommon. For women who have a genetic mutation or significant history of breast cancer in their families; it’s recommended they get screenings earlier. Researchers know that the most common breast cancer type is related to estrogen changes in the body. Women’s hormone levels begin shifting at about age 40 and the median age of breast cancer patients is 52. There are some physicians who don’t recommend screening until the age of 50. Ultimately, we believe every woman should talk with their doctor about the right time to get screened.
MMA: What are the ways either members of the Impact Hub Austin community or the greater community can get involved in Komen Greater Central and East Texas?
EG: Most of our volunteer opportunities are focused on the events we hold each year, but there are many other ways to be a part of the family as well. From staffing health fairs, stuffing bags, even wrapping holiday gifts for donations at the mall, if someone is wanting to get involved, there’s a place for everyone!
Obviously we’re always looking for people to help with fundraising (i.e. donate) to our cause.
And also, this is less obvious, but if you know of an organization that could benefit from a grant from us; please let them know and encourage them to apply. We have a grant cycle open now and the deadline is in December.
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Learn more about Susan G. Komen Greater Central and East Texas
