Advocacy

Komen Greater NYC has been at the forefront in advocating for sound public policy on the local, state and national levels. Komen Greater NYC has advocated as an organization and in collaboration with others.

help us ensure and protect government programs providing cancer services - especially to underserved individuals - by working with us and the Susan G. Komen for the Cure® Advocacy Alliance, the nonpartisan voice of the 2.5 million breast cancer survivors and the people who love them.

Our collaborative mission is to translate Komen for the Cure's vision of a world withoug breast cancer into action at every governmental level so that we can discover and deliver the cures for this devastating disease.

Learn more and sign up to be a Komen Advocacy Insider.

Komen Advocacy Alliance Accomplishments

The most recent achievements of the Komen Advocacy Alliance were inclusion of important provisions in the new health care law serving cancer patients and survivors. The Alliance and grassroots supporters worked tirelessly to get elements into the legislation:

• Ending insurance discrimination based on pre-existing conditions.
• Limiting out-of-pocket medical costs by eliminating annual and lifetime caps on benefits.
• Ensuring breast cancer screening is widely available, beginning at age 40.
• Reauthorizing and improving the patient navigation program to help underserved women make the most effective use of health care services.
• Removing barriers to participation in clinical trials.
• Educating women, including young women, about the importance of breast self-awareness and understanding their risk factors for breast cancer.

Not all these provisions will go into effect immediately but be phased in over the next five to seven years. During that time, Komen will continue to fight in the interest of cancer patients and survivors. Learn more about the law.

Komen Greater NYC Takes a Stand

Our advocacy activities, both in conjunction with the Komen Advocacy Alliance and locally, are focused in the areas of breast cancer research, early detection, and access to high-quality care. We sometime comment on other health-related issues that we feel impacts the breast cancer community.

Our current activities are centered on:

• Budget cuts to the Cancer Services Program
• Access to Clinical Trials
• Access to Oral Chemotherapy Drugs

Cancer Services Program

New York State’s Cancer Services Program (CSP) provides no-cost life-saving services for the early detection of breast, cervical and colorectal cancers to low-income, uninsured and/or underinsured New Yorkers. CSP provides clinical breast exams, mammograms, surgical consultations and diagnostic testing. Eligible clients are also enrolled in the Medicaid Cancer Treatment Program for Medicaid coverage for the duration of their breast cancer treatment. The CSP operates through an extensive network of 47 Partnership organizations, including 5,000 hospitals, clinics and physician offices.

Recent U.S. Preventive Services Task Force recommendations and cuts to New York State-funded safety-net programs are limiting access to breast cancer screening for the underserved, fueling the perception that cancer screening is not important.

Screening is key to surviving breast cancer. Women must have access to today’s screening tools. As more people lose their jobs and health coverage, the demand for cancer screening for the uninsured keeps growing. Komen Greater NYC is leading the way to ensure full funding of this important safety-net program in the New York State budget.

Learn more about the Partnership in your area.

To fight CSP cuts:

• Komen Greater NYC set up a coalition to help sustain New York State’s CSP program in collaboration with the American Cancer Society (ACS).
• The coalition’s 20 members — co-chaired by Komen Greater NYC and ACS — fought to maintain CSP’s funding during the last budget cycle, preventing cuts to the program in the fall of 2008.
• We were not able to avert cuts ($8.3 million) to the 2009/2010 state budget, but reduced their extent and impact.
• The coalition monitored the 2010/2011 budget, but all cancer programs were lumped together with no dedicated dollar amount set aside for screening.
This year, the coalition will meet with key NYS legislators to underscore how important this program is for their constituents.

• Komen Greater NYC CEO Dara Richardson-Heron, MD wrote an op-ed in the New York Daily News citing how CSP cuts were putting New York women’s health at risk (June 2009).

Action item: Contact your state assemblyperson and senator and demand that CSP funds be reinstated.

Access to Clinical Trials

Clinical trials often provide advanced, life-saving treatment to breast cancer patients and also help scientists and physicians determine which treatments are safe and effective. Benefits of clinical trials do not reach enough breast cancer patients in need. Less than five percent of the 1.4 million Americans diagnosed with cancer each year participate in clinical trials.

Komen Greater NYC is advocates breaking down the barriers breast cancer patients face in enrolling in clinical trials.

We do so by:

• Underwriting clinical research enrollment programs that address barriers such as transportation costs, patient understanding of the trials themselves).
• Supporting patient navigation for underserved and underrepresented communities so that more breast cancer patients will be able to access life-saving treatment.

Health care reform bill — The health care reform bill mandates that, by 2012, insurers be prohibited from dropping coverage because an individual chooses to participate in a clinical trial. Insurance companies will also be prohibited from denying coverage for routine care that they would otherwise be provided just because an individual is enrolled in a clinical trial. This mandate applies to all clinical trials that treat cancer or other life-threatening diseases. Until this provision goes into effect, Komen Greater NYC will continue to monitor the process to ensure smooth transition.

Clinical Trials and Access Fund — Komen Greater NYC supports the Clinical Trials and Access Fund Act introduced by NYS Assemblyman Dick Gottfried and NYS Senator Thomas Duane, (A.1805 Gottfried/S.4492 Duane). The legislation will increase access to clinical trials by establishing a New York State Department of Health grant program to help patients overcome barrier to clinical trial participation.

These competitive grants would be available to nonprofits, medical schools, health care provider organizations, hospitals and municipalities for patient and physician education, transportation, lodging assistance and patient navigation services to increase clinical trial enrollment.

Action item: The legislation been passed in the NYS Assembly. Contact your state senator asking him/her to support the bill (S.4492).

Access to Oral Chemotherapy Drugs

Oral chemotherapy has emerged as an attractive and necessary option for select patients — people, who with support from their doctors, will follow their prescribed treatment schedule and monitor themselves for complications. Oral chemotherapy has been developing at an increasing rate with more than one-quarter of 400 anti-cancer agents in the pipeline intended as oral drugs.

Health insurance companies lag behind the science requiring, for example, that patients pay out-of-pocket for their oral chemotherapy while intravenous therapies are traditionally covered. IV chemotherapy often only requires an office co-payment; oral chemotherapy, covered as a prescription drug, often has higher co-payments.

The Cancer Oral Chemotherapy Equity Bill (S.5864/A.7355-A.) currently before the New York State Legislature, would fix this discrepancy by requiring health insurance plans to provide coverage for oral cancer drugs on the same basis as intravenous chemotherapy. Other states — Indiana, Iowa, Oregon and Vermont — already have similar laws.

Komen Greater NYC is working to ensure health insurance plans provide coverage for oral cancer drugs on the same basis as for intravenously-administered chemotherapy without reduction of IV chemotherapy benefits. Our goal is for people to be able to make their own choices about which treatment to undergo.

Komen Greater NYC Advocacy Accomplishments

Petition against U.S. Preventive Services Task Force Guidelines

In November 2009, the U.S. Preventive Services Task Force released new guidelines that could significantly change breast cancer screening approaches in the U.S. by recommending against routine mammograms for women ages 40 to 49 and questioning the value of breast cancer screenings for women older than 75.

However, evidence shows that mammography reduces breast cancer mortality among women aged 40 to 49, as well as women age 50 and older.

Komen Greater NYC collected over 250 signatures, at its 2010 Annual Awards Luncheon, urging members of Congress to ensure that there are no impediments to mammography screening for women 40 and above.

Komen for the Cure continues to recommend an annual mammography for women 40 and older and even earlier for those with known breast cancer risks.

Komen Lobby Day 2010

Anita McFarlane, Director of Grants and Public Policy, and Zenia Dacio-Mesina, Grants Program Coordinator, traveled to Washington, D.C. on April 29 to join nearly 200 Komen for the Cure advocates in emphasizing the importance of early detection and to challenge policymakers to invest in cancer screening technology research.

In eight hours, our delegation met with 11 legislators from the greater NYC area and joined with other NYS delegations to meet with Senators Gillibrand and Schumer. Legislators and staffs showed great interest in breast cancer issues, especially for the underserved.

Activities concluded with a talk by Secretary of Health and Human Services Kathleen Sebelius about the impact of health reform on cancer patients and the importance of Komen’s voice. Read Sec. Sebelius's remarks.

Petition to Promote the Rights of Breast Cancer Patients

Komen Greater NYC believes every person deserves access to timely and affordable high-quality breast health care, which is not the reality. Even with the health care reform law, gaps remain.

On Race Day and at Advance Registration for the 20th annual Komen Greater NYC Race for the Cure, KGNYC collected some 2,000 signatures petitioning our elected officials to properly implement these patient protections and protect vital safety-net programs until everyone has access to breast cancer screening and treatment.