In the News

BY MAIMAH KARMO - 12/06/16 08:40 AM 

   

I was diagnosed with Stage 2 triple-negative breast cancer at the age of 32.  At first, as a single mom fighting breast cancer, I felt alone and defeated.  Then I began to look at the bigger picture and wondered, how many other women were battling breast cancer at a young age like me? I learned that there were more than 18,000 young women diagnosed with breast cancer annually. Who do they turn to for help or support?

While in treatment for breast cancer, I decided to establish the Tigerlily Foundation – an organization that educates, empowers, advocates for and supports young women affected by breast cancer.  No one should feel alone during such a critical time.   

Today, Rep. Debbie Wasserman Schultz, a breast cancer survivor, and I will be hosting the fifth annual Young Women’s Breast Health Day on Capitol Hill, a forum for nationwide awareness and support.  This year, we are focusing on young women living with metastatic breast cancer.  Young women from across the country will be meeting with their lawmakers to share their personal experiences with breast cancer and stress the need to ensure young woman have access to the best available treatments to offer their best chance at survival.  We will also host a panel of experts – highlighting the need for more investment in researcher, advocacy, patient care, and integrative care – including spirituality and complementary and alternative interventions.

Metastatic breast cancer is advanced breast cancer that has spread beyond the breast to other organs in the body and claims more than 40,000 lives a year.  There are an estimated 155,000 people living with metastatic breast cancer in the United States today, and even patients who could appear to be “cured” of cancer can still face metastasis months or years down the road.  Tumor cells that shed from the primary tumor could remain hidden in the body only to become re-activated later and grow in a new organ.

According to the American Cancer Society, breast cancer is the number one cause of cancer death in young women under the age of 50 and approximately six to 10 percent of new breast cancer cases are initially metastatic. Also, around 30 percent of breast cancer patients who are treated successfully for their primary disease could later be diagnosed with metastatic breast cancer.

Even with impactful statistics, the funding discrepancy is devastating for those affected by metastatic cancer.  More than 90 percent of cancer patients are dying from cancer metastasis, but only 2.3 percent of cancer research dollars (11 million out of 485 million) in the U.S. has gone to research developed to improve outcomes for patients specifically suffering from metastatic cancer.

By collectively bringing advocates and young women living with metastatic breast cancer together with lawmakers and their staff, we are educating one another and heightening awareness about the facts and need for improvement in the treatment of metastatic breast cancer.

Some women are less inclined to go for a mammogram screening based on their income, lack of access to care, health insurance or lack of awareness. We want to educate young women about the importance of breast health information and screenings so they know their body and can be their own best advocate when they need help. Through increased awareness, education and early detection, more young women’s lives can be saved.

Women need to become aware that younger women can get breast cancer – it is not a disease that only impacts older women.  It does not discriminate based on age.  There are also ethnic and racial background disparities that woman should understand.  African-American women, for example, have a higher risk of being diagnosed under the age of 40 that other populations. 

And although there is global advocacy for breast cancer, there is a need for ensuring better representation and support for younger women’s health issues.  Today, we will urge lawmakers to support policies that improve the quality of life for young women affected by metastatic breast cancer by advocating for increased research funding, treatment advances and access to screenings.

As advocates and survivors, it is important for us to collectively stand for and support one another during Young Women’s Breast Health Day on Capitol Hill to help ensure that all young women have access to breast health education, screenings, treatments and better health outcomes.  No one is alone in this fight.

Maimah Karmo is a ten-year survivor of breast cancer and the Founder and CEO of the Tigerlily Foundation, a leading national breast cancer organization that educates, empowers, advocates for and provides support to young women – before, during and after breast cancer.

http://thehill.com/blogs/congress-blog/healthcare/308872-today-is-young-womens-breast-health-day-on-capitol-hill