It’s day 25 of National Breast Cancer Awareness Month! Elections are coming up November 8, but many states, including Tennessee, provide opportunities for early voting. I voted today, and I have the sticker to prove it! We all know that voting is a right that was hard won, and YOUR VOTE MATTERS! It matters especially in local and state elections where you choose the candidates that will represent you in everyday matters.
This is true for many issues, including health. As a breast cancer survivor and advocate, I lend my vote and my voice to support policies that help with health equity and equality, screening access and affordability, affordable quality cancer care for everyone no matter where you live, no matter your income, no matter your race, ethnicity, gender identity, ability or disability—EVERYONE deserves a fair and just opportunity to be as healthy as possible.
What sorts of legislation is on the line for breast cancer? The Metastatic Breast Cancer Access to Care Act is “a bill to amend title II of the Social Security Act to eliminate the waiting periods for disability insurance benefits and Medicare coverage for individuals with metastatic breast cancer and for other purposes.” That means that people living with MBC will be able to get the financial assistance they need immediately without the barrier of long waiting periods.
Another important piece of legislation is the Triple-Negative Breast Cancer Research and Education Act of 2021 (Introduced in 2021). “This bill requires research and education activities related to triple-negative breast cancer. The cells of these breast cancers are negative for estrogen receptors, progesterone receptors, and excess HER2 protein, so they do not respond to hormonal therapy medicines or medicines that target the HER2 protein receptors. Specifically, the National Institutes of Health must conduct and support research into the disease. Additionally, the Centers for Disease Control and Prevention and the Health Resources and Services Administration must develop information about triple-negative breast cancer, including information regarding the elevated risk for minority women, for the public and for health care providers.” This is so important given the aggressive nature of the triple negative breast cancer subtype.
These are just two examples of legislation at the national level (you can find information about other important legislation for breast cancer here). Check your state legislature’s website for pending legislation specific for your state. Let your elected officials know you support legislation that helps breast cancer patients, survivors, caregivers, and the general public. And remember to VOTE! Check out this site for dates and details for your district.
It’s day 9 of National Breast Cancer Awareness Month! Today, let’s cover breast cancer and how it affects the LGBTQIA+ Community—Lesbian Gay Bisexual Trans Queer/Questioning Intersex Asexual Plus other gender identities outside of Cis Heterosexual (Straight). Cancer doesn’t discriminate, but people, particularly those in power, can and do. Fortunately, there are resources available to help people in these communities navigate the healthcare system, including cancer care. My focus is on breast cancer, but some of the resources provided in the list below are more general and include multiple types of cancer care.
LGBTQIA+ people often experience discomfort and discrimination during healthcare encounters (and in the current political climate, in their communities and at the hands of politicians who challenge their very right to exist), which may account for reduced odds of receiving annual mammography screenings among some members of the community. This is especially true for trans persons who experience difficulty finding providers who understand their unique needs and who can or will perform appropriate screenings (e.g. breast and pelvic exams for trans men, prostate exams for trans women). One glaring example from my neck of the woods is a recent attack on Vanderbilt University Medical Center’s Transgender Clinic by Republican state legislators. Early detection is key to a positive outcome when it comes to cancer, and anything that creates a barrier to seeking and receiving essential health screenings, including bigotry, can cause unnecessary pain, suffering, and death.
LGBTQ populations have the highest reported rates of tobacco and alcohol use compared to non-LGBTQ populations, which increases cancer risk and correlates with a disproportionate number of LGBTQ individuals living with cancers, including anal, breast, cervical, colorectal, endometrial, lung, and prostate (click here for reference). The intersection of identities (race/ethnicity, disability, cultural) and socioeconomic status compounds inequities in care and screening and disparities in survival and quality of care and life (click here for reference). Clearly, there is need for accessible and tailored cancer care for LGBTQIA+ populations in every location. The same issues with insurance coverage, transportation and accessibility, and availability of care that plague urban and rural communities, respectively, still apply.
What’s available now? There are several resources to help LGBTQIA+ persons with cancer screenings and cancer care. Not enough, but the ones in place are a great start:
Cancer is a great and terrible equalizer. It doesn’t care if you’re a Democrat, Republican, Independent, or if you support other political philosophies or are apolitical. Anyone can be diagnosed with cancer. For breast cancer, access to routine screening and diagnostic imaging is critical for early detection, accurate diagnosis, and receiving treatments in a timely fashion.
It can literally mean the difference between life and death.
When breast cancer metastasizes, or spreads to other parts of the body, time is precious, and people living with metastatic breast cancer need all the financial and medical support they can get.
How can you help? There are two pieces of legislation in need of support and a federal program in desperate need of reauthorization:
The first piece of legislation, the Access to Breast Cancer Diagnosis (ABCD) Act, will reduce out-of-pocket costs for diagnostic imaging for people with health insurance. While screening mammography is normally covered, additional imaging that’s needed when something suspicious or abnormal is spotted on a mammogram can become pricey. For each of my diagnoses (initial breast cancer diagnosis and diagnosis for residual disease), I required additional diagnostic mammography, diagnostic MRI, and diagnostic ultrasound. They were most DEFINITELY medically necessary to determine that the suspicious lesions on my mammography were indeed cancer – and for past follow-up diagnostic imaging, to determine that suspicious lesions were benign. This legislation will reduce the financial burden for diagnostic imaging that can be a barrier for early diagnosis.
The second piece of legislation, the Metastatic Breast Cancer Access to Care Act, would reduce wait times for receiving Social Security Disability Benefits and Medicare. Right now, the wait time for Medicare benefits for people living with metastatic breast cancer is 5 months, and the average wait for disability is 24 months. The five-year survival rate for stage 4 metastatic breast cancer (MBC) is 22 percent, and the median survival is three years (Reference). As one legislative staffer noted when I spoke with him about the issue and the wait times, “That’s cruel.” It is. People living with MBC need medical care coverage and financial support for themselves and their families. Legislation waiving wait times for ALS and end-stage kidney disease passed, setting a precedent for this important legislation supporting MBC.
Please contact your Senators and Congressional Representative and urge them to co-sponsor and/or support these three key pieces of legislation. Feel free to copy and paste information from this blog post or use it as a script in a phone call.
Greetings, beautiful people! These past two years have been tough, haven’t they? Pandemic fears, economic woes, and uncertainty about the future have caused everything from low level anxiety to outright terror for so many people. I’ve experienced anxiety during each breast procedure I’ve endured over the past two years, from unilateral mastectomy of my left breast followed by physical therapy, expander fills, autologous DUG flap reconstruction surgery, and three revisions to match size and shape that included fat grafts on the left and and mastopexy plus scar revision on the right.
Of course I was anxious about anesthesia, outcome, what I was putting my body through – again – and when it might end. But I was also terrified of exposure to the Covid virus.
Then, I imagined how terrified patients undergoing chemo and radiation must feel, knowing they are at an even higher risk due to a compromised immune system. If you are one of those patients, check out these resources from the American Cancer Society.
That’s left me feeling pretty powerless, and I don’t like that feeling. What can I do? How can I help?
In addition to working in the lab, sharing my knowledge and experience, and giving to my organization, I’ve found giving to organizations dedicated to helping patients facing cancer empowering. These organizations do fantastic work. They not only fund research for tomorrow’s new treatments, they also fund initiative to help patients today. Right now.
For #GivingTuesday2021, I’ve chosen Susan G. Komen for the Cure. Like ACS, they support research, outreach and advocacy, and provide patient resources and support. And they are fully breast cancer focused, providing information and also financial assistance to patients in need – that’s SUPER important in these difficult times. SGK has supported my survivor sisters and their families, my colleagues in research, and they will continue to do so thanks to the generosity of donors.
You don’t have to break the bank to support them, either. Small donations really add up, especially with matching initiatives from partnering sponsors. In fact, donations made to SGK through December 1 have DOUBLE the impact thanks to matching. So this year, consider supporting SGK for Giving Tuesday.
Here are some other great breast cancer/cancer focused organizations you can support, many of which are highlighted in my book and many of which focus on healthcare equity and equality.
OrganizationsYou Can Support
METAvivor is an organization that supports patients with metastatic breast cancer and funds research that specifically seeks to improve outcomes for patients with metastatic disease, https://www.metavivor.org/
Sisters Network, Inc., brings awareness of the impact breast cancer has on the African American community and provides a space for African American breast cancer patients to meet, bond, and receive support while receiving cancer treatment, http://www.sistersnetworkinc.org/.
The African American Breast Cancer Alliance focuses on promoting awareness, early detection, and prevention while providing emotional and social support with culturally specific information and programs for women of color, https://www.aahafortwayne.org/.
Sisters by Choice seeks to eliminate access barriers to screenings and quality care for breast cancer, including a mobile clinic to bring care to uninsured and underserved communities in Georgia, https://www.sistersbychoice.org/.
Black Women’s Health Imperative focuses on improving overall health and wellness of African American women and girls, provides outreach and curates black women’s health data through its #WeRefuse initiative for breast cancer, https://bwhi.org/.
Latinas Contra Cancer is dedicated to creating an inclusive healthcare system for cancer care in the underserved Hispanic/Latina population, http://latinascontracancer.org/.
The Latino Cancer Institute is devoted to promoting education, services, research, and policies that impact Hispanics/Latinos in the United States when it comes to cancer, https://latinocancerinstitute.org/.
The American Indian Cancer Foundation seeks to eliminate cancer burdens of Indigenous people by improving access to prevention, early detection, treatment, and support for survivors, https://www.americanindiancancer.org/.
Asian American Cancer Support Network is dedicated to providing education, support and a diverse network of resources for Asian Americans affected by cancer, http://aacsn.org/.
Maina Foundation is dedicated to raising awareness and support for breast cancer early detection among South Asian Indian women, https://mainafoundation.org/.
The American Association of People with Disabilities is dedicated to increasing political and economic power for people with disabilities, supports access to quality comprehensive and affordable healthcare for people with disabilities as part of their mission, https://www.aapd.com/.
American Association on Intellectual and Developmental Disabilities works to protect the universal human rights of people with intellectual and developmental disabilities, supports access to quality healthcare, https://www.aaidd.org/.
National LGBT Cancer Network, an organization that provides education, support, and advocacy for LGBT cancer patients and survivors, and also maintains a directory of LGBT-friendly cancer treatment facilities, https://cancer-network.org/.
National LGBT Cancer Project, an organization providing support and advocacy for LGBT cancer survivors and supporting equal and appropriate access to cancer care for the LGBT community, https://www.lgbtcancer.org/.
Got any other organizations to add to my list? Send them my way! Please!