National Alliance of State Prostate Cancer Coalitions

It is vital that more American men and women become involved in prostate cancer activism, both as members of groups such as the National Alliance of State Prostate Cancer Coalitions (NASPCC), individual state prostate cancer coalitions, and other action oriented organizations. Groups of informed constituents can have a very powerful influence. We must tell our elected officials that it is a matter of life or death to thousands of men; we need to make funding available to continue excellent basic and translational research currently in process. We must assure that, at a minimum, research continues at the current rate and that it is translated into clinical practice as soon as possible. We do not want to see the process slowed or stopped. Nice guys with essential skills are dying.

A program for activism is being developed by NASPCC. For example, the Alliance has joined forces with One Voice Against Cancer (OVAC) to call on Congress to increase funding for the Department of Defense Congressionally Directed Medical Research Program (CDMRP) from $80 million to $125 million annually, so that researchers can conduct essential clinical trials. Vital prostate cancer research and applied clinical trials must be better funded if the scientific advances in immunological applications are to be made available in clinical practice. More advocates WILL make a difference. Please write letters on this issue. Read a letter NASPCC and other prostate cancer organizations recently sent to Congress. Feel free to use all or part of it in your own letter writing campaign.

The National Alliance of State Prostate Cancer Coalitions (NAPCC) is working to fight prostate cancer all the way to the United States Congress. The following information concerns proposals before the United States Congress. We encourage you to review the proposals and contact your Senators and Representatives to express your support for passage of any bill we have listed. We have included information about how to find and contact your legislator. This is everyone's fight - please join in the grassroots effort to make the defeat of prostate cancer a national priority. We have also included in this Legislative Section information about current laws that protect your rights as a prostate cancer patient/survivor/caregiver.

Legislative Primer for the NASPCC

Bills
Bills are prefixed with H.R. when introduced in the House and S. when introduced in the Senate, and they are followed by a number based on the order in which they are introduced. The vast majority of legislative proposals are in the form of bills.

Joint Resolutions
Joint resolutions are designated H.J. Res. or S.J. Res. and are followed by a number. Like a bill, a joint resolution requires the approval of both Chambers in identical form and the president’s signature to become law. There is no real difference between a joint resolution and a bill. 

Concurrent Resolutions
Concurrent resolutions, which are designated H.Con. Res. or S.Con. Res., and followed by a number, must be passed in the same form by both houses, but they do not require the signature of the president and do not have the force of law. They are frequently used to express the sentiments of both of the houses of Congress.

Simple Resolutions
Simple resolutions are designated H.Res. and S.Res., followed by a number. Simple resolutions are often used to express the sentiments of a single house, such as offering condolences to the family of a deceased member of Congress, or it may give "advice" on foreign policy or other executive business. Simple resolutions do not require the approval of the other house nor the signature of the President, and they do not have the force of law.

Current Proposals before the United States Congress Pertaining to Prostate Cancer

H.R. 2115 - "Men and Families Health Care Act"- This would require the establishment of a Men’s Health Office in the Department of Health and Human Services to mirror the Woman’s Health Office.   

H.R. 2254 - "Agent Orange Equity Act of 2009" - Includes as part of the Republic of Vietnam, for purposes of the presumption of service connection for diseases associated with exposure by veterans to certain herbicide agents while in Vietnam, such Republic's inland waterways, ports, and harbors, waters offshore, and airspace above. Includes as veterans eligible for such presumption those who: (1) served on Johnston Island during the period beginning on April 1, 1972, and ending on September 30, 1977; or (2) received the Vietnam Service Medal or the Vietnam Campaign Medal. 

H.R. 2463 - "Taxpayers Cancer Research Funding Act of 2009" - This bill would amend the Internal Revenue Code of 1986 to establish and provide a check-off for Breast and Prostate Cancer Research Fund and other purposes. 

H.R. 2949 - "Prostate Cancer Research and Prevention Act" - This would authorize the CDC to administer grants to states and local health departments for prostate cancer related preventative health and research programs. 

H.R. 2952 - "Medicaid Prostate Cancer Coverage Act of 2009" - This would require Medicaid coverage for medical assistance for men screened and found to have prostate cancer under a federally funded screening program. 

H.R. 3675 - "National Quality Cancer Care Demonstration Project Act of 2009" -  This would require the Department of Health and Human Services to establish a quality cancer care demonstration project to establish quality metrics and align Medicare payment incentives in cancer treatment planning and follow-up care for Medicare beneficiaries with cancer. 

H.R. 4383 - "Thomas J. Manton Prostate Cancer Early Detection and Treatment Act of 2009" - This would provide funds to support early detection and treatment in underprivileged and underserved communities in the same manner as provided for breast and cervical cancer. 

H.R. 4563 - "Cancer Screening Coverage Act of 2009" - This bill would amend the Employee Retirement Income Security Act of 1974, Public Health Act, and the Internal Revenue Code of 1986 to require that group and individual health insurance coverage and group health plans provide coverage screening for breast, prostate and colorectal cancer. 

H.R. 4756 - "Prostate Research, Imaging, and Men’s Education Act of 2010" (PRIME) - Among other things this would require the CDC to conduct a national education campaign to encourage men to seek prostate cancer screening and create awareness of improved imaging technologies for screening and diagnosis. This would also provide $500 million more in prostate cancer research funding over five years. 

S. 717 - "21st Century Cancer Access to Life-Saving Early Detection Research and Treatment" (ALERT) - Amends the Public Health Service Act to revise provisions related to the National Cancer Program, including the establishment of an entity within the National Cancer Institute (NCI) to augment ongoing efforts to advance new technologies in cancer research, support the national collection of tissues for cancer research purposes, and ensure the quality of tissue collection. Sets forth provisions governing clinical trials, including ethical and privacy standards. Requires the Secretary of Health and Human Services to award grants for research on cancers with a low five-year survival rate and rare cancers.. Provides for biomarkers research. Amends the Employee Retirement Income Security Act of 1974 (ERISA) to prohibit a group health plan from discriminating against participants and beneficiaries participating in cancer clinical trials. Provides for coverage under Medicare for payment of routine costs of care furnished to individuals participating in cancer clinical trials. 

H Res 346 & S Res 191 - Congressional Resolution that there is a Prostate Cancer epidemic in the African-American community and appropriate research and education is needed to combat this epidemic.

Department of Defense Prostate Cancer Research Information

Why is the Department of Defense Involved in Funding Prostate Cancer Research?
In 1992 a highly visible lobbying campaign by grassroots advocacy organizations, primarily the National Breast Cancer Coalition, increased awareness among policymakers of the need to expand funding for breast cancer research. These consumer groups emphasized the need to fund research in ways that were different from those employed by traditional medical research organizations such as the National Institutes of Health.

Congress allocated specific funds for breast cancer research in the Department of Defense (DOD) appropriations bill. The Department of Defense was chosen because of its long history in performing medical research studies and because the program was designed for flexible and quick responses to changing research needs and priorities. The Department of Defense Congressionally Directed Medical Research Programs (CDMRP) now administers programs funding breast cancer, prostate cancer, ovarian cancer, chronic myelogenous leukemia, neurofibromatosis, and tuberous sclerosis research.

Does the CDMRP Work?

The CDMRP differs from other federal research programs by funding high risk-high reward research and employs a multi-year strategic plan that involves scientists and patients in the grant review process.

Why is the Prostate Cancer Community Requesting $125 million for the CDMRP?
More research will lead to better diagnostic tools, better treatments, better quality of life after treatment and ultimately a cure. It will also allow the CDMRP program to conduct vitally important human clinical trials. Clinical trials are the only way to get promising treatments tested and approved for use by patients.

What has been cut due to lack of funding?
Human clinical trials have not been fully funded in eight years as the program has not been able to match medical inflation during that time. Currently, the CDMRP cannot directly fund clinical trials in fiscal year 2009.

Without adequate funding, clinical trial studies that might produce potentially lifesaving medicines will never have the opportunity to make it to the patients who need them most.

Who is Supporting this Initiative?
The initiative to increase federal research funding at the CDMRP is a cooperative activity of more than 15 national and state organizations committed to ending the death and suffering due to prostate cancer.

What Can I Do to Help?
Right now is the time to act, ask your Congressman and Senators to increase the Congressionally Directed Medical Research Program (CDMRP) for Prostate Cancer at the Department of Defense (DOD) to $125 million in order to end this disease and save lives. When you are done, make sure to email your friends and relatives and have them contact Congress. Together we will beat this disease, saving countless lives.

How to Find Your Elected Officials

Follow the directions as given and you will find who your elected officials are and how to make contact with them.

1. Go to www.votesmart.org
2. On the left side of the opening page, under “Find Your Representative” you are directed to type in your nine-digit Zip Code in the box headed “Search by Last Name or Zip Code.”
3. If you do not know your nine-digit Zip Code, refer to any piece of junk mail or a catalog.
4. Type in the 9 digits in this order xxxxx-xxxx Note: you MUST type in the hyphen. Click on GO.
5. Scroll down the screen that comes up and you will find the elected officials in your district, both state and national.
6. Place the cursor on the name of the elected official you want to contact and click. Information about that official will appear on the screen.

Good luck and don’t hesitate to use this website!!!

Laws Protecting Your Rights

The federal government has passed a number of laws designed to safeguard the rights of a patient regarding health insurance and related medical matters. The five of the most commonly know laws are explained below. In addition to the federal laws a number of states have enacted laws of their own aimed at protecting a patient’s rights. In the absence of a federal Patient’s Bill of Rights, many states have enacted their own such measures. Patients should be aware of these rights. An internet search of "patient’s rights" will lead to those states that have enacted such legislation.

The Americans with Disabilities Act (ADA) - This law prohibits discrimination against people with disabilities in employment, transportation, public accommodations, communications, and government activities.  Employers are required to make reasonable accommodations to the known disabilities of a qualified applicant/employee if it does not impose an "undue hardship" on the operation of the business. An accommodation example would be allowing an employee with cancer time to have radiation or chemotherapy treatments. For more information, go to the United States Equal Employment Commission web site or to the ADA web site.

The Consolidated Omnibus Budget Reconciliation Act (COBRA) - This law gives workers and their families the right to continue group health benefits for a limited time, usually 18 months, after the loss of employment, reduced work hours, or other life events. For more information, go to the Department of Labor’s web site.

The Family Medical Leave Act (FMLA) - This law provides eligible employees with up to 12 weeks of unpaid, job-protected leave per year beyond whatever sick leave the employer provides. The law also mandates the employer to maintain the individual’s group health benefits during the leave. Under the act, a person can take a medical leave if unable to work due to cancer. For more information, go to the Department of Labor’s web site.

The Health Insurance Portability and Accountability Act (HIPAA) - This law prohibits discrimination against employees and their dependents enrolled in group health plans based on their health status, provides for coverage under group health plans that limit exclusions for preexisting conditions and allows individuals to enroll in a new plan under certain circumstances. For more information, go to the Department of Labor’s web site.

The Patient Safety and Quality Improvement Act of 2005 (PSQIA) - This act establishes a voluntary reporting system designed to enhance the data available to assess and resolve patient safety and health care quality issues. To encourage the reporting and analysis of medical errors, the PSQIA provides Federal privilege and confidentiality protections for patient safety information, called patient safety work product. PSQIA authorizes the Department of Health and Human Services (HHS) to impose civil penalties for violations of patient safety confidentiality. PSQIA also authorizes the Agency for Healthcare Research and Quality to list patient safety organizations known as PSO’S. For more information, go to the HHS website.

In all cases, if you have difficulty finding information using the web sites, type in the name of the law in the search box.

More Resources

• Advocacy Links
• Sending Advocacy Letters
• How to Contact Elected Officials