The Young Women’s MBC Disparities Alliance is a collaborative of patients, experts, caregivers, community leaders and partners, focused on establishing priorities and implementing measurable interventions to end MBC disparities for black women.
Vision: The vision of the Young Women’s MBC Alliance is to end breast cancer disparities in women of color in our lifetime.
Goal: Build global collaborative addressing MBC disparities to lower the mortality rate for black women.
Charter: The Young Women’s MBC Disparities Alliance will work to develop evidence-based initiatives to advance understanding and awareness of breast cancer in women of color; establish and execute public and health care professional education activities; to conduct prevention research; to strategically work to end barriers for black women by addressing those barriers and ensuring accountability within stakeholder communities. The Alliance will also provide research, develop, implement and evaluate evidence-based activities for this high-risk population.
Membership: The Young Women’s MBC Disparities Alliance will consist of an Executive Committee, and Members. Members will include organizations, corporations and individuals with expertise in breast cancer, metastatic breast cancer, health disparities, epidemiology, technology, healthy lifestyle, early detection, diagnosis, public health, social marketing, genetic screening and counseling, treatment, and in related disciplines with a specific focus on women who are young, metastatic and African American.
- MBC disproportionately affects the African American community and younger women.
- Black women and white women get breast cancer at about the same rate, but black women are 40% more likely to die from breast cancer than white women.
- Black women are more likely than white women to get triple-negative breast cancer, a kind of breast cancer that is often aggressive and recurs after treatment.
- Due to a legacy of exploitation of people of color in the clinical trial/scientific/research settings, African American women have a mistrust of the scientific, healthcare system and providers.
- African American women have lower enrollment in clinical trials, which makes it more difficult to design treatments for this population, which may contribute to lower mortality rates.
Key Activities: Key activities will be established by the Alliance and executed collaboratively.
Disparities Alliance Roster – July 2020 (PDF)
Frequency: Meetings will be held monthly
Learn how the work of the Alliance supports Tigerlily Foundation’s overall Disparities Initiatives and the work of #InclusionPledge, which is working to end disparities for Black women in our lifetime.”
Tigerlily Foundation has a 16-year history in the policy landscape. Our goal has always been to advocate for impact by driving policy making to create equity for patients. Patient advocacy leadership has always been key—here within Tigerlily and in guiding public policy. We water the seeds of inspiration and innovation, and working with advocates, advocacy organizations and stakeholders, have created policies and legislation that have changed the lives of millions of people. We are excited to culminate these years of momentum into our Health Equity Advocacy and Leadership (HEAL) Policy Center for Excellence (COE).
- End barriers to accessing and receiving quality, equitable care for all,
- Lead innovation through patient-leadership, and
- Achieve health equity and eliminate disparities in breast cancer.
Through the HEAL Policy COE, we seek to influence policy for these purposes through bi-directional learning, programs, and training to cultivate a center to exchange ideas, activate voices and create lasting change.
Policy History & Impact
In 2009, the United States Preventative Services Task Force (USPSTF) updated its guidelines to recommend against routine screening mammography for women between ages 40 to 49 and to recommend biennial (every other year), instead of annual (every year), screening mammography for most women between ages 50 to 74. Previously, from 2002–2009, USPSTF guidelines recommended routine screening mammography at least every two years for women aged 40–49 and annual mammography for women 50 years and older.
This change in guidelines was and continues to be very controversial and Tigerlily is especially concerned about the barriers to accessing screening (and thus diagnostic and treatment services) for young women already facing additional barriers and potentially contributing to furthering disparities for patients of color as well as potentially delaying treatment contributing to later-stage diagnoses/progression to metastatic breast cancer. Committed to our mission to educate, advocate for, empower and support young women before, during and after breast cancer and further our vision to end disparities of age, stage and color, Tigerlily turned to public policy to protect patients. Here is a snapshot of the history of our policy work and the impact of our advocacy:
In 2009, Tigerlily worked with Congresswoman Debbie Wasserman Schultz to develop the Breast Cancer Education and Awareness Requires Learning Young (EARLY) Act. The EARLY Act provides: (1) campaigns to educate the public and health care professionals about young women’s breast health, (2) research into prevention of breast cancer in young women, and (3) support for young women with breast cancer.
The EARLY Act was reauthorized in 2020 which continued the education campaigns, research and support at an increased funding level of $9 million annually from 2022 through 2026.
For more information on the EARLY Act and Tigerlily’s work, please click HERE.
To read the EARLY Act text, click HERE.
In 2014, Tigerlily worked with Congresswoman Debbie Wasserman-Schultz and Susan Brooks to collaborate on the Protecting Access to Lifesaving Screenings (PALS) Act. The PALS Act was designed to ensure that women ages 40-49 continue to have access to annual screening mammography. In 2015, through the appropriations process via the PALS Act, a three-year moratorium was placed on implementing the updated USPSTF breast screening guidelines. The moratorium was subsequently renewed until January 1, 2020 and the Protecting Access to Lifesaving Screenings (PALS) Act of 2021 was introduced in the Senate in July of 2021 to extend the moratorium once again.
The PALS Act requires that any provision of law referring to the current USPSTF breast screening recommendations be administered as if (1) it is referred to USPSTF recommendations issued before 2009 (routine screening mammography at least every two years for women aged 40–49 and annual mammography for women 50 years and older); and (2) those recommendations applied to any screening mammography modality would including any digital modality.
Access to regular, preventative breast screenings for high-risk young women is essential in our effort to eradicate barriers and disparities. And this issue has not dissipated in the years since the USPSTF guidelines update in 2009. In recent years there has been a significant decline in breast cancer screening due to the Coronavirus pandemic. As we try to return to our regular healthcare after the decline since 2020, the PALS Act will assist in removing access and cost barriers for young women needing preventative services.
To read the bill text, click HERE.
Tigerlily Foundation is committed to advancing public policy to further our mission to educate, advocate for, empower, and support young women before, during, and after breast cancer. We are striving to make our vision of ending disparities of age, stage, and color in our lifetime a reality through:
- Health Equity
- Ending Barriers
- Access Improvement
- Leadership through Patient Innovation
We Can HEAL Together: Legislation & Issues
Survivorship Care Plan #APlan4All
Approximately 17 million Americans are cancer survivors – by 2030, there will be approximately 22 million.
Yet gaps in cancer survivorship care and disparities in cancer survivors’ health and quality of life persist.
To advance education and access to survivorship care plans for all healthcare providers and patients, including those living with metastatic cancer, Tigerlily Foundation continues to work closely with Congresswoman Debbie Wasserman Schultz in support of the forthcoming Cancer Survivorship Care Act.
Together, we will advance policy to bridge gaps and create standardized models for survivorship care plans to ensure all people diagnosed with cancer have a quality survivorship plan.
Advocacy in Action: Ensuring Access to Survivorship Care
Our Founder & President, Maimah Karmo, recently interviewed fellow breast cancer survivor and friend, Congresswoman Debbie Wasserman Schultz, about the role we can play in ensuring access to survivorship care plans. Watch highlights below:
#APlan4All Collective – Partners Advancing Survivorship Care Plans for All
We cannot do this alone and are proud to partner to improve the lives of cancer survivors together through the #APlan4All Collective – from diagnosis through active treatment, posttreatment, and chronic care – to improve cancer survivors’ health and quality of life.
- A cancer survivor is any individual with a history of cancer, from the time of diagnosis through the rest of their life.
- A survivorship care is the medical care of an individual who has completed their treatment for cancer or of an individual who is undergoing maintenance treatment for cancer.
Disparities in Survivorship Care
- Cancer survivors face complex physical, emotional, psychosocial, and neurological challenges that persist beyond diagnosis and the start of treatment, arising months and years after treatment.
- Black, Indigenous, and People of Color (BIPOC) survivors have significantly lower health-related quality of life measures compared to their white counterparts.
- Clinicians, researchers, and insurers have limited agreement on services and the point when survivorship care begins.
- Cancer survivors, and their health care providers, face many difficulties understanding and coordinating the transition between primary and specialty care – resulting in disjointed and infrequent communication and treatment.
#APlan4All Collective is calling on policymakers to improve cancer survivors’ health and quality of life by:
- Ensuring cancer patients, their families, and health care providers can access survivorship care plans to avoid additional health-related or financial hardships.
- Creating comprehensive, coordinated, and forward-thinking cancer survivorship programs across Federal agencies.
To learn more about #APlan4All Collective efforts and join us, please visit our website here.
Safer Beauty Bill Package
Tigerlily Foundation is working with the Breast Cancer Prevention Partners to support the Safer Beauty Bill Package. This package consists of four bills to make beauty and personal care products safer for everyone by getting the toxic and often cancer-causing chemicals out, reducing unsafe chemical exposures for the most vulnerable, and making ingredient transparency the new industry standard. These bills cover almost every aspect of personal care product safety and are especially impactful for communities of color who are most targeted with these products.
HR 5537: Toxic Free Beauty Act. Bans 11 of the most toxic chemicals on the planet from beauty and personal care products sold in the U.S. Many of these chemicals of concern especially impact cosmetic products used by salon workers and women of color.
HR 5538: Cosmetic Fragrance and Flavor Ingredient Right to Know Act. Requires the disclosure of the secret, unlabeled and often toxic fragrance and flavor chemicals in our personal care products that are toxic to human health and the environment.
HR 5540: Cosmetic Safety for Communities of Color and Professional Salon Workers Act of 2021. Creates cosmetic safety protections for these two vulnerable populations who are most at risk of unsafe exposures because of the toxic chemicals in the products marketed to them or commonly found in their workplaces.
HR 5539: Cosmetic Supply Chain Transparency Act. Requires upstream suppliers to provide ingredient disclosure and safety data to cosmetic companies so that they can get the information they need to make safer products.
You can also view the fact sheets for each bill HERE.
Tigerlily Foundation is supporting the Alliance for Patient Access in urging the review of new treatments for chemotherapy-induced neutropenia, a severe side effect of chemotherapy that increases risk of infection and hospitalization, to include the opportunity for public and patient input/feedback. This review is done by the Institute for Clinical and Economic Review (ICER), a non-governmental non-profit health economics organization that seeks to place a value on medical care by providing comprehensive clinical and cost-effectiveness analyses of treatments, tests, and procedures. ICER is providing their final report on one of these new treatments without providing the cancer community the opportunity to voice their concerns at a public meeting, one of the few opportunities for patient input. Cutting out this important step denies patients and advocates the opportunity to have their voices included throughout this process against best practice models.
For more information you can visit the AfPA ICER Webpage.
Tigerlily Foundation is collaborating with Patients for Safer Nuclear Medicine (PSNM) to urge the Nuclear Regulatory Commission (NRC), which regulates nuclear medicine, to require nuclear medicine extravasations to be reported. Nuclear medicine extravasations are an injection mistake which occur when a radioactive drug is accidentally injected into a patient’s tissue instead of their vein as intended. An example of this includes scans such as PET/CT scans that require an injection of a radiopharmaceutical. A serious extravasation can harm patients – it can delay radioactive therapies from reaching their intended target, compromise imaging and lead to the wrong diagnosis, cause tissue and skin damage, and in the longer term increase the chance of cancer.
Currently, a provider can accidently inject most or all of a radioactive drug into a patient’s arm tissue instead of their vein, and they are not required to tell the patient or the NRC, even though other nuclear medical accidents must currently be reported to the NRC. This means the burden is on the patient to self-report signs or symptoms of an extravasation to get treatment and have the mistake reported. We are supporting PSNM’s efforts to close this loophole and protect patients.
Visit PSNM’s website for more information here.
Join us in harnessing your Power of One to make your voice heard and BE THE CHANGE! Click HERE to HEAL together and take action today on these issues and more.