Advocay: How Do I Get Involved?

Breast Cancer Advocacy: Get Involved

Advocacy is one of the most powerful tools we have in the fight against breast cancer. You do not need a medical degree or a background in politics to make a difference. Most of the time, effective breast cancer advocacy involves nothing more than making a phone call, sending an email, or writing a letter to your elected representative in support of specific legislation.

Y-ME National Breast Cancer Organization and our partner organizations continuously monitor breast cancer-related legislation at both the federal and state level — tracking funding priorities, insurance coverage mandates, research appropriations, and patient protection policies. When the moment is right to act, we make it easy for you to take action quickly and effectively.

Below you will find several ways to get involved — from signing up for advocacy alerts to participating in research, contacting your legislators, and exercising your right to vote.

Advocacy Alerts — Take Action When It Matters

Sign up to receive Y-ME Advocacy Alerts and we will notify you at the critical moments when your voice can make the greatest impact. When legislation affecting breast cancer research funding, insurance coverage, or patient rights comes to a vote, we will send you a timely alert with everything you need to contact your representatives — pre-written messages, legislator contact information, and clear instructions — so taking action takes only minutes.

Alert subscribers also receive the Y-ME Advocacy eNewsletter, which covers:

  • Updates on breast cancer legislation at the federal and state level
  • Victories achieved through collective advocacy action
  • Upcoming opportunities to speak out on issues that matter
  • Tips and resources for first-time and experienced advocates alike

Sign up for Advocacy Alerts →

Contact Your Legislators

Elected officials respond to constituent contact — and a personal phone call or email from a voter in their district carries real weight. Whether you are asking your representative to cosponsor a breast cancer research funding bill, support expanded insurance coverage for screening, or protect patient access to clinical trials, your voice matters.

Here is how to get started:

  • Find your federal representatives: Visit congress.gov/members/find-your-member and enter your zip code to identify your U.S. Senators and House Representative, along with their contact information.
  • Find your state legislators: Visit ncsl.org and select your state to locate your state senate and assembly representatives.
  • Track how your legislators vote: Use GovTrack.us to monitor voting records, follow specific bills, and sign up for alerts on legislation you care about.
  • Look up a specific bill: Visit congress.gov, search by bill number or topic, and check the list of cosponsors. If your representative has already cosponsored a bill you support, thank them — positive reinforcement matters. If they have not, call their office and ask for their support.

Tips for effective contact:

  • Be brief and personal — share your own connection to breast cancer in one or two sentences
  • State clearly what you are asking them to do (cosponsor a bill, vote yes or no, increase funding)
  • Include your name, address, and zip code so staff can verify you are a constituent
  • Follow up — a second contact after a few weeks reinforces your message

Project LEAD® — Science Training for Advocates

Project LEAD® (Leadership, Education and Advocacy Development) is an intensive science training program developed by the National Breast Cancer Coalition (NBCC) specifically to prepare breast cancer advocates to participate meaningfully in research and public policy processes. Y-ME advocates have attended Project LEAD® and bring those skills back to our community.

The program covers:

  • Basic cancer biology, genetics, and epidemiology
  • How to critically evaluate clinical research and trial design
  • How advocates can influence research priorities and funding decisions
  • Pathways for breast cancer survivors and allies to serve on scientific review panels

Advocates who complete Project LEAD® go on to serve on NIH study sections, Department of Defense Congressionally Directed Medical Research Programs (CDMRP) peer review panels, and institutional review boards — giving the patient perspective a seat at the table where research decisions are made.

To learn more about Project LEAD® and upcoming training opportunities, visit the NBCC Project Support page.

Participate in Breast Cancer Research

One of the most direct forms of advocacy is participating in or supporting breast cancer research studies. Every woman who enrolls in a study contributes data that can improve outcomes for future patients.

The Sister Study

The Sister Study, conducted by the National Institute of Environmental Health Sciences (NIEHS), is one of the largest and longest-running studies of breast cancer risk in the United States. It enrolled 50,884 women aged 35–74 whose sister had been diagnosed with breast cancer, and has been following participants since 2003 to understand how genes, environment, and lifestyle interact to affect breast cancer risk.

The Sister Study has already produced landmark findings, including research on the role of shift work and light exposure, chemical exposures, diet and weight, and genetic factors in breast cancer development. Results continue to be published and inform prevention strategies.

The study’s enrollment phase is now complete, but you can:

  • Follow ongoing findings at sisterstudy.niehs.nih.gov
  • Share published results with family members and health care providers
  • Look for related successor studies that may be enrolling

Find a Clinical Trial

Participating in a clinical trial is one of the most impactful contributions a patient or high-risk individual can make to the advancement of breast cancer treatment. Trials evaluate new drugs, combinations, surgical techniques, screening tools, and prevention strategies before they become standard of care.

  • ClinicalTrials.gov — The official U.S. registry of all federally and privately supported clinical trials. Search by diagnosis, location, and eligibility.
  • BreastCancerTrials.org — A patient-friendly matching service for breast cancer-specific trials.
  • Your oncologist or breast center — Ask at every appointment whether any trials are currently available for your diagnosis or risk profile.

Key Federal Advocacy Priorities (2024–2025)

Current areas where breast cancer advocates are needed most at the federal level include:

  • Department of Defense Breast Cancer Research Program (CDMRP) — Annual congressional appropriations for this program fund innovative, investigator-initiated breast cancer research. Advocates are needed to urge Congress to maintain or increase funding each appropriations cycle.
  • The SCREEN Act and mammography access legislation — Bills addressing insurance coverage for supplemental screening (MRI, ultrasound) in women with dense breasts or elevated risk, and eliminating cost-sharing for diagnostic follow-up mammograms.
  • The Metastatic Breast Cancer Access to Care Act — Legislation improving Social Security disability access for people with metastatic breast cancer, eliminating waiting periods for benefits.
  • The Lymphedema Treatment Act — Legislation requiring Medicare to cover compression garments for lymphedema — a gap that currently forces many breast cancer survivors to pay out-of-pocket for medically necessary supplies.
  • National Cancer Institute funding — Protecting and growing the NCI budget directly affects the volume and quality of breast cancer research funded each year.

Stay current on the status of these and other bills through the NBCC Advocacy Action Center and the Susan G. Komen Advocacy Hub.

Help with Medication Costs

Access to affordable treatment is itself an advocacy issue — and a practical one for many patients right now. If you or someone you know is struggling to afford prescription medications related to breast cancer treatment, the following programs may help:

  • NeedyMeds.org — A comprehensive database of patient assistance programs, disease-specific funds, and free/reduced-cost clinics searchable by drug name, diagnosis, or location.
  • Partnership for Prescription Assistance (PPA) — Connects eligible low-income, uninsured, or underinsured patients with manufacturer-sponsored patient assistance programs. Call 1-888-4PPA-NOW (1-888-477-2669).
  • CancerCare Financial Assistance — Limited grants for transportation, home care, childcare, oral medications, lymphedema supplies, and durable medical equipment.
  • Patient Advocate Foundation Co-Pay Relief Program — Direct financial assistance with co-pay costs for insured patients who qualify. Call 1-866-512-3861.
  • The Lymphedema Treatment Act Assistance — Until federal legislation passes, ask your treatment center’s social worker about local resources covering compression garment costs.

Register to Vote

Voting is one of the most fundamental acts of advocacy. Every election — federal, state, and local — includes candidates and ballot measures that affect health care funding, insurance coverage, and research priorities. Your vote directly shapes the environment in which breast cancer policy is made.

  • Register to vote or update your registration: vote.gov — the official U.S. government voter registration portal, available in multiple languages.
  • Check your registration status: Visit your state’s Secretary of State website to confirm your current registration and polling location.
  • Request an absentee or mail ballot if you are undergoing treatment and may not be able to vote in person on Election Day.

If you are a patient in active treatment, many states allow you to request a ballot by mail without providing a reason. Contact your local election office or visit vote.org for state-specific information.

Stay Informed

Staying educated is the foundation of effective advocacy. Here are the best current resources for tracking breast cancer policy and research news:

Every call made, every letter sent, every vote cast, and every study joined is an act of advocacy. Y-ME believes that an informed, empowered community is the most powerful force in the fight against breast cancer. You have more influence than you think.

For peer support or breast cancer information, call the Y-ME National Breast Cancer Organization Hotline at 1-800-221-2141, available 24 hours a day, 7 days a week. Spanish language support: 1-800-986-9505.