PREPARED PATIENT® ADVOCATE

Policy impacts every aspect of our lives including how and where we access health care, what kinds of services and resources are available to us, how quickly we can receive care, and how much we pay for that care. For those of us who have been impacted by cancer or chronic disease, we know that this can translate into barriers to care and delays or even gaps in the services that we need. Therefore, it’s important to understand the policies, laws, and regulations that can impact our health and wellness.

We have an opportunity to influence government decision-making through advocacy. Simply put, advocacy means using your voice to make your opinion heard and as a result potentially influencing people with decision making authority. Policy makers, including Members of Congress, listen to the views of their constituents (who are people that live in their electoral region and have the power to vote).

It’s easy to become an advocate:

  1. Educate yourself about issues important to you. Prepared Patient® Advocate seeks to provide information about oncology and health care policy issues that could impact you, your family, and/or your community. At the bottom of this page, you’ll find a list of legislation that is before Congress for consideration right now. Keep the information below in mind as you review the list.
  2. Develop brief and clear talking points.
    • Do you support or oppose a policy issue? Why?
    • Why should your elected official care about it?
    • Has your elected official already taken a stand on the issue?
    • Why does it matter for you and for your community?
  3. Make your voice heard by writing or calling your elected officials and educating them about specific issues of interest and why it’s important to cancer patients, survivors, families and the broader community.
  4. Remember that your voice matters. Nearly everyone is impacted by cancer, and it’s important that policies reflect our needs, values and priorities.

Relevant Caucuses/Coalitions

Find Your U.S. Representative

Find Your U.S. Senator

Contact the White House

Cancer and Health Care Federal Legislation

RESEARCH AND FUNDING

H.R.531/S.318 The Act would allow a budget adjustment to accommodate increased investment in the National Institutes of Health, commensurate with the purchasing power it would have if appropriations had kept up with inflation since 2003 (the last time the budget doubled).

H.R.2104/S.289 This bill would create a mandatory “trust fund” to increase annual funding for biomedical research by a rate of inflation plus 5 percent.

H.R.6 This Act would remove barriers to increased research collaboration, incorporate the patient’s perspective in drug development and regulatory review, and advance personalized medicine. This bill also would modernize clinical trials, remove regulatory uncertainty for the development of new medical apps, and provide new incentives for the development of drugs to fight rare diseases.

H.R.617 This bill would require researchers to report clinical trial results, whether positive or negative. Researchers who fail to do so would be penalized.

H.R.45 This Act would expand research on triple-negative breast cancer (those cancers that do not express the genes for estrogen or progesterone receptors or Her2/neu). It would require the distribution of information to the public and health care providers, including the incidence and prevalence of triple-negative breast cancer—particularly the elevated risk for minority women—and information on treatment options.

BREAST CANCER

H.R.2540/S.1192 The bill calls for the creation of an education campaign, focused on minority patients, addressing the availability and coverage of breast reconstruction, prostheses and other options for breast cancer patients anticipating surgery.

S.370 This Act would require mammography facilities to provide written information about breast density in the reports provided to patients and their physicians.  This bill also would require the expansion of research on breast density, cost-effectiveness and feasibility of supplemental imaging, and best practices concerning mammograms and supplemental screening for patients with dense breasts.

H.R.1197/S.746 The bill would establish the Commission to Accelerate the End of Breast Cancer to: (1) help end breast cancer by January 1, 2020, and (2) recommend courses of action that could become strategies to prevent breast cancer and breast cancer metastasis, prioritizing those that are: (a) not prioritized in the public sector, and (b) unlikely to be achieved by the private sector due to technical and financial uncertainty.

H.R.3339/S.1926 In 2015, newly drafted breast cancer screening guidelines recommended that mammography screening begin at age 50, in contrast to previous guidelines that set the age at 40. This Act would require that, for two years, all provisions of law referring to these screening recommendations be construed as if they referred to the older guidelines, until the impact of the new recommendations can be assessed.

H.R.45 This Act would expand research on triple-negative breast cancer (those cancers that do not express the genes for estrogen or progesterone receptors or Her2/neu). It would require the distribution of information to the public and health care providers, including the incidence and prevalence of triple-negative breast cancer—particularly the elevated risk for minority women—and information on treatment options.

OTHER SPECIFIC CANCERS OR CONDITIONS

H.R.3347 This Act would amend Medicaid provisions by paying states 50% of costs incurred in educating individuals with sickle cell disease on the risk of renal medullary carcinoma.

S.2373 Standard treatment for lymphedema (swelling) involves the use of compression supplies, which are not currently covered by many private insurers, Medicaid, or Medicare.  This Act would require Medicare to cover compression supplies.

H.R.3284 This bill would require the development of a patient registry to collect data on mesothelioma.

H.R.2730/S.216/S.222 This bill would require: (1) the development of a plan to speed development of diagnostic tools, (2) a review of the effectiveness of diagnostic tools, (3) the coordination of federal research and services, (4) an evaluation of all active federal prostate cancer programs, and (5) the inclusion of high-risk men in clinical, research and service efforts. Required reports would include recommendations based on an evaluation of diagnostic tools, as well as an outline for a national research plan.

H.R.1220/S.624 This bill would waive Medicare coinsurance for colorectal cancer screening, whether or not a therapeutic procedure (e.g., tissue removal) is performed at the same time.

H.R.2035/S.1079 This bill would eliminate cost-sharing for all colorectal cancer screening tests, even if tissue is removed, and for any follow-up procedures. It also would provide incentives for providers participating in colorectal cancer screening quality improvement registries.

MEDICARE/MEDICAID-RELATED (NON-SITE SPECIFIC)

H.R.1934 This Act would establish a Medicare oncology medical home demonstration project in order to enhance quality of care and cost efficiency.

H.R.1416 The Act would temporarily remove sequester cuts to Medicare reimbursement for chemotherapy and other physician-administered drugs and requires a study of: (1) the impact of a shift from cancer care in community clinics to hospitals, and (2) costs to the government and Medicare beneficiaries.

S.1549 This Act would require Medicare to cover advance planning and care coordination for individuals with a progressive disease, when provided by hospice or a provider through an interdisciplinary team.  It adds a model for payment for care coordination and prioritizes the development of quality measures for effectiveness, patient-centeredness and accuracy of care plans. This bill would add requirements for completing care planning for hospitals, skilled nursing facilities, home health agencies and hospital programs before discharge and would authorize a national education campaign.

H.R.2895 The Act would equalize Medicare payments for cancer services between those provided in community clinics and those provided in hospitals.

H.R.2846 The Act would extend Medicare reimbursement to cancer care planning and coordination services.

H.R.2035/S.1079 This bill would eliminate cost-sharing for all colorectal cancer screening tests, even if tissue is removed, and for any follow-up procedures. It also would provide incentives for providers participating in colorectal cancer screening quality improvement registries.

OTHER BILLS OR LEGISLATION

H.R.2739/ S.1566  The Act would require health plans that cover chemotherapy to apply the same cost sharing and limitations to patient-administered anticancer drugs as are applied to physician-administered anticancer medications.

H.R.3381/S.1883 This bill would improve efforts to identify and track childhood cancer incidence, improve the quality of life for childhood cancer survivors, ensure publicly accessible access policies like compassionate use of drugs for patients who have run out of options, and identify opportunities to expand research efforts.

H.R.3119 The Palliative Care and Hospice Education and Training Act would establish a workforce training initiative for doctors, nurses, and allied health professionals; expand palliative care and hospice research; and create a national education and awareness campaign to inform patients, families, and health professionals about the benefits of palliative care throughout the continuum of care for patients with serious or life-threatening illness.

H.R.1600 For health plans that use a formulary or other tiered cost-sharing structure, this Act would limit prescription drug cost-sharing. It also would prohibit health plans from imposing higher cost-sharing requirements for medications in a specialty drug tier than for drugs in a non-preferred brand drug tier.

H.R.2846 The Act would extend Medicare reimbursement to cancer care planning and coordination services.

H.R. 2362 This Act would extend the timeline for adding medical debt to credit reports, would require debt collectors to provide notice to consumers before making such reports, and would require the removal from a credit report of information about a paid debt within 45 days.

PLEASE NOTE: INCLUSION OF LEGISLATION ON THIS WEBPAGE IS FOR INFORMATIONAL PURPOSES ONLY AND DOES NOT CONSTITUTE ENDORSEMENT BY THE GEORGE WASHINGTON UNIVERSITY CANCER INSTITUTE.