HEAL Policy Center of Excellence

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).

Through Tigerlily’s HEAL Policy COE, we plan to further focus this work by educating, empowering, and lifting patient voices to ensure they are amplified, in order to achieve health equity and end disparities. The HEAL Policy COE will focus on systemic changes through policy at the local, state, and federal level to:

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 FOCUS

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

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.

TNBC Research & Education Act
Triple-Negative Breast Cancer Research & Education Act of 2023, H.R. 235

In the U.S., breast cancer disproportionately affects women of color. Black women are 41% more likely to die of breast cancer than white women and have a 39% higher risk of recurrence.

Triple-negative breast cancer (TNBC), which accounts for up to 20% of new breast cancers, is also more common in Black women, young women and Hispanic women.

TNBC is hard to treat, is often diagnosed at later stages, and is more likely to spread to other parts of the body than other types of breast cancer. According to the American Cancer Society, individuals diagnosed with metastatic TNBC have just a 12% chance of surviving longer than five years, and there is a higher chance of it recurring compared to other types of breast cancer.

One of the most difficult hurdles is that we don’t know much about TNBC. The name of the subtype itself speaks to that; it doesn’t have estrogen or progesterone receptors and makes too little or none of the HER2 protein. It lacks these three known designations of breast cancer and so we call it “triple-negative.” Because the cancer cells don’t have these proteins, hormone therapy and drugs that target HER2 are not effective, so chemotherapy is still the main systemic treatment option.

In other words, therapies are very limited for TNBC. We need to know more. We need to do more research on unlocking the unknowns of TNBC. And we need to be better educated about who is at higher risk of TNBC.

The TNBC Research & Education Act seeks to address these disparities and enhance efforts to combat TNBC by focusing on three key areas:
- Increased Research Funding: The bill would allocate additional resources for TNBC research through the National Institutes of Health and Office of Research on Women’s Health, facilitating a better understanding of its underlying biology, risk factors, and potential therapeutic targets. This funding would enable researchers to develop innovative treatment strategies tailored specifically to TNBC and expedite the discovery of more effective therapies to save more lives.
- Awareness and Education Campaigns: The bill also aims to raise public awareness through the Centers for Disease Control and Prevention about TNBC, including its signs, symptoms, and risk factors, particularly among high-risk populations. Educational initiatives would empower individuals to recognize early warning signs and seek timely medical attention, potentially leading to earlier diagnoses and improved outcomes.
- Health Care Provider Education Campaigns: The bill lastly would ensure that health care providers remain informed on current TNBC information and education, including the elevated risk for minority women to develop triple-negative breast cancer and the range of available options for the treatment of symptomatic triple-negative breast cancer.
TAKE ACTION WITH US TODAY TO LET MEMBERS OF CONGRESS KNOW THIS IS AN IMPORTANT ISSUE TO YOU BY SENDING A LETTER TO YOUR REPRESENTATIVE ASKING TO SUPPORT THE TNBC RESEARCH & EDUCATION ACT!

CLICK HERE
Survivorship Care Plan #APlan4All
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.

#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.

Defining Survivorship
- 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.
SCREENS Act and TNBC Increased Funding
Screening for Communities to Receive Early and Equitable Needed Services (SCREENS) for Cancer Act (H.R. 8185/S. 4440)

The National Breast and Cervical Cancer Early Detection Program (NBCCEDP) is a critical safety-net program that provides breast and cervical cancer education, screening, and diagnostic services for underserved populations who are low-income, uninsured and underinsured who do not qualify for Medicaid. The program has a proven record of cancer detection and provides public education, outreach, patient navigation, and care coordination to increase breast cancer screening rates and reach these underserved populations.The Screening for Communities to Receive Early and Equitable Needed Services (SCREENS) for Cancer Act reauthorizes and modernizes the NBCCEDP by allowing:
- expansion of services for individuals at increased risk of breast cancer
- a greater emphasis on implementing innovative evidence-based interventions, and
- proactive outreach to underserved communities through media, peer educators, and patient navigators.
Access to screening is even more important as many people delayed or missed annual screenings due to the COVID-19 pandemic, likely resulting in more advanced cancers and increased cancer deaths; and new populations may need assistance to access basic cancer screenings due to the pandemic-related financial crisis. NBCCEDP is one of the only programs that serve these under-resourced, underserved communities throughout the country, as well as populations facing high disparities and morbidities from breast cancer. This piece of legislation is an important step toward ensuring that more women receive access to essential screening services before it is too late.

In addition, the reauthorization of the NBCCEDP and increased funding would allow for triple-negative breast cancer (TNBC) specific support, including education and diagnosis strategies in existing breast cancer screening, diagnosis, and linkage to health care programs. TNBC is an aggressive form of breast cancer that disproportionately impacts Black, Hispanic, and younger women and is often diagnosed at later stages of the disease with a poor prognosis. This funding, along with $3M allocated to expand awareness and prevention efforts for Breast Cancer Awareness for Young Women in connection with the goals of the Cancer Moonshot, will help address the significant TNBC inequities.

Click here for the SCREENS Act and TNBC factsheet.

Take action with us today to let members of congress know this is an important issue to you by sending a letter to your representative asking to support the SCREENS Act to reauthorize the NBCEEDP and increase funding for TNBC support!

CLICK HERE
Increasing Access to Bone Health Screening

Increasing Access to Osteoporosis Testing for Medicare Beneficiaries Act (H.R. 3517/S. 1943)

While treatments provide patients with potentially life-saving options, many common breast cancer treatments take a toll on bone health. For this reason, it is especially important for breast cancer patients to have access to bone health and osteoporosis screening. However, for most, becoming aware of the onset of osteoporosis occurs either by an accidental fall and breaking a bone or by having a DXA (dual energy x-ray absorptiometry) examination. This is even more true for Patients of Color, as racial and ethnic disparities exist for screening, diagnosis, and treatment of osteoporosis as they do for breast cancer. Further adding to these disparities, since 2007, Medicare has cut reimbursement rates for DXA screening by 72% which has resulted in nearly half of DXA office providers discontinuing these services. Currently, DXA testing is reimbursed at $39 while a decade ago DXA was reimbursed at $139. These cuts have left physicians unable to continue providing DXA testing. These cuts have led to a decline in testing and an increase in barriers to access osteoporosis testing, most especially for those living in underserved and/or rural areas, widening the already existing disparities facing breast cancer patients of color. H.R. 3517/S. 1943 would set the reimbursement rate back to an appropriate level.

The Increasing Access to Osteoporosis Testing for Medicare Beneficiaries Act is bipartisan legislation and will support better outcomes for breast cancer patients, take a step towards health equity, and lower costs for our health care system.

For additional information, see our fact sheet here.

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Take action with us today to let members of congress know this is an important issue to you by sending a letter to your representative asking to include the Increasing Access to Osteoporosis Testing for Medicare Beneficiaries Act in the next Medicare hearing and support its passage!

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Increasing Access to Genetic Screening and Preventative Services

Reducing Hereditary Cancer Act (H.R.4110 / S.3656)

Tigerlily Foundation has joined our partners at FORCE (Facing Our Risk of Cancer Empowered) to support the Reducing Hereditary Cancer Act. Currently, Medicare patients face barriers to genetic testing and recommended preventive care for those who carry genetic mutations. Those with Medicare coverage have access to cancer screening services such as clinical breast exams, mammograms and pelvic exams, however critical genetic testing is only covered for those already diagnosed with cancer, regardless of family cancer history or a known genetic mutation in the family. Genetic testing for a hereditary predisposition to breast and other cancers is the standard-of-care and widely recognized as medically necessary for individuals with certain personal or family histories of the disease, yet if an individual who is eligible and recommended to have genetic testing has Medicare and has not already been diagnosed with cancer, they do not have access to this test. Knowledge of an inherited genetic mutation (i.e. BRCA1, BRCA2, ATM, CHK2, PTEN, etc.) can be life-saving for an individual and their family members. Furthermore, if an individual pays out-of-pocket for testing and is found to have an inherited genetic mutation associated with increased breast cancer risk, the medically necessary high-risk cancer screenings and/or risk-reducing interventions are NOT covered either.

The Reducing Hereditary Cancer Act aims to modify the current Medicare statutes to close this gap in access by providing coverage for genetic testing for those with a known hereditary cancer mutation in their family and those with a personal or family history suspicious for hereditary cancer as well as provide access to increased cancer screening and risk-reducing surgeries as recommended for those with inherited genetic mutations (for example, preventative removal of breasts or ovaries).

Closing these gaps in coverage is especially important for Patients of Color as an abundance of research shows disparities in access to genetic counseling and testing among underserved racial and ethnic minorities. These inequities in access lead to disparities in cancer screening, prevention and early detection, which in turn can contribute to the existing disparities in breast cancer mortality rates for Black women. Implementation of the Reducing Hereditary Cancer Act would bring us one step closer to achieving health equity and would save the lives of many living with increased risk of breast cancer due to inherited genetic mutations.
Increasing Access to Genetic Counseling
Safer Beauty Bill Package

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.
ICER Review

ICER Review

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.
Extravasations Reporting

Extravasations Reporting

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.

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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:

EARLY Act

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.

PALS Act

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.