Activists and Advocates

Comment

Comment by Kathy Meade on April 10, 2009 at 10:38am

Given the increased controversy about early detection for prostate cancer it is very important to push for research money so that work can progress more quickly to find a better marker. You can take action today to make a difference. Be part of the solution.

It's time to mobilize our advocates for the Senate Appropriations Letter now being circulated by Senator Johnson and Senator Crapo. The letter requests the Defense Appropriations Subcommittee to provide $125 million for the Prostate Cancer Research Program when they markup the bill later this summer

Quick Guide to Calling Congress
A phone call is an effective way to voice your concerns to Congress and impart a personal touch to your request, if you are unable to visit in person. When you call your Members of Congress, it is important to be clear, concise and direct.
STEP 1. GET CONNECTED TO YOUR MEMBER’S OFFICE
Dial (202) 224-3121 to reach the Capitol Switchboard, which can connect you to your Member’s offices. If you are not sure who your Senator is, the Switchboard can tell you based on your zip code. The
STEP 2. WHEN YOU CALL
• Ask to speak with the legislative aide who deals with healthcare. This person is your Member’s expert in the area and will be far more likely to respond positively to your message.
• Introduce yourself. The aide will probably ask for a mailing address or zip code to verify that you are a constituent. It may be helpful to also give your phone number and email address so the Member or their staff can follow up with you.
• Let them know why you are calling. Below is a sample script. Draw from this script, but be sure to include your personal relationship to prostate cancer.
Sample Script
Senators Johnson and Crapo are circulating a request letter asking the Defense Appropriations Subcommittee to provide $125 million for the Prostate Cancer Research Program. Please sign the Johnson-Crapo letter to Chairman Inouye and Ranking Member Cochran to fund this important program. The PCRP is an important piece in our battle against prostate cancer and has been virtually level funded at around $80 million for 8 years while other existing programs within the Congressionally Directed Medical Research Program have received increases and new programs have been created. Prostate cancer research needs this funding to continue to advance important research in early diagnosis, treatment and quality of life. I am a [patient, survivor, advocate, researcher, doctor] and resident of [State] - [ADD PERSONAL MESSAGE HERE].

You can also direct people to go to the fundresearchnow.org website and write their Senators, if they have not already done so.

The deadline for Senators to sign this letter is April 24. The Senate is in a State Work Period (formerly known as Recess) until April 17 which means that most Senators will be at home through Sunday, April 19 and return to DC on the 20th or 21st. If you reach out now, you may be able to get a meeting in the State (if convenient) sometime late this week or next week.

After you make your call, please send me an email with the outcome so I can let the people who are regularly on the Hill how responsive your senators were.

Below are some FAQ’s that may make you feel more comfortable.

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. Funding from the CDMRP has already led to breakthroughs in the war on cancer with the breast cancer drug Herceptin and the leukemia drug Gleevec.
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.
To Learn More About the CDMRP/PCRP
Download the Prostate Cancer Research Program online brochure for an excellent idea of what the CDMRP is all about: http://cdmrp.army.mil/pubs/pips/pcpip.pdf

Thank you!!!!!

Kathy

Comment by Kerry M. Donahue on January 22, 2009 at 1:19pm

The comissioner of the FDA has invited comments to: commissioner@fda.gov .

Send him an e-mail.

I sent a letter asking for more transparency and for a more patient friendly environment at the FDA. They need to move more quickly to respond to citizen concerns which can be formally made by filing a Citizen Petition (ours has been pending since July 2007) with the agency.

Additional transparency would indicate how decisions at the agancy are made. In the case of the immunotherapy Provenge the public face they put on it indicated approval was coming back in May 2007 instead the agency asked for further evidence of efficacy which was provided to them in October (even more information will be coming not later than April 2009).

A more responsive FDA could enable patients to have more treatment options available to them sooner.

Comment by Kerry M. Donahue on January 20, 2009 at 9:39am

Hey Darryl

I hope you have been well. Can you share anything else with us about your conference call with Mr. Farrington and the other groups?

Comment by Darryl on January 16, 2009 at 9:12am

Two more weeks to tell your contacts about the Petition to Make Prostate Cancer a National Priority! at http://www.prostatecancerpetition.org

You need only send a sentence or two, to all of your email contacts, asking them to sign on at http://www.prostatecancerpetition.org

Now is the time for ALL of us to act. Less than a minute to sign the petition; more power to fight prostate cancer.

Comment by Darryl on January 8, 2009 at 5:15pm

An interesting conference call, today. Several prostate cancer organizations were present, including Malecare, Zero, Ustoo, Naspcc Virginia State Prostate Cancer Coalition and Phen. There were others, but, not everyone identified themselves, so, hard to know exactly who was online. The take away... "change is slow." If you were on the call, please write your thoughts.

Comment by Kathy Meade on January 6, 2009 at 10:50am

If you read the information at the bottom of this notice you will learn more about CER and the potential impact it may have on the treatemtn of disease.
There is major pressure for CER. The prostate cancer community might be well served by discussing how it should be structured. If we want to be sure it is structured in a reasonable way that does not work against the benefit of men with prostate cancer we need to know what we want

ATTENTION HEALTH CARE STAKEHOLDERS: SAVE THE DATE



EDUCATIONAL FORUM ON

THE IMPORTANCE OF WELL-DESIGNED

COMPARATIVE EFFECTIVENESS RESEARCH



On Monday, January 12th, the Partnership to Improve Patient (PIPC) will host an educational forum on the use of comparative effectiveness research (CER) in the American health care system. As the leading domestic issue in 2009, health care reform is taking center stage – and CER is receiving increased attention as a noteworthy solution to the cost and quality problem. In order to put patients and health care providers first and support optimal health care outcomes, the 111th Congress must closely examine how CER is structured and advance policies that strengthen, rather than impede, good clinical decision-making.



This forum is designed to gather input from leading health care stakeholder organizations, and will feature panelists from the patient, provider and policy communities who will discuss the importance of adopting CER that protects patient access to innovative treatment options; supports the ability of patients, doctors and other health care professionals to choose the care that best meets the individual needs of the patient; and, fosters continued medical innovation.



DATE:

Monday, January 12, 2009



TIME:

2:00 PM



LOCATION:

Willard Intercontinental Washington: Crystal Ballroom

1401 Pennsylvania Avenue NW

Washington, DC



Please RSVP to forum@improvepatientcare.org.



More about PIPC and its 2009 Educational Series:

The Partnership to Improve Patient Care (PIPC) is a broad-based coalition of health care organizations working together to raise awareness about the value of well-designed comparative effectiveness research (CER), the important role of continued medical innovation as part of the solution to cost and quality challenges in health care, and the need to ensure that proposals to expand the government’s role in CER are centered on patient and provider needs.



PIPC will be hosting regular educational forums in 2009 regarding the use of responsible and effective CER, which will feature perspectives from some of the leading minds in health care and economic policy, medical science and technology, and patient advocacy.





For more information on PIPC and its CER educational series, visit www.improvepatientcare.org.

Comment by Joel Nowak on September 3, 2008 at 7:32pm

I will be attending the PCRI conference in LA this weekend. I am bringing with me copies of the petition to make prostate cancer a national priority (www.prostatecancerpetition.org). If anyone else will be there I would appreciate help in distributing them at the conference. Please let me know if you are willing to assist.

Thanks

Comment by Darryl on August 6, 2008 at 2:22pm

Our (and I mean, OUR ) Petition to Make Prostate Cancer a National Priority is nearing 9,000 signatures. Let's all get our friends and family to sign, so that we might make a cool 10,000 signatures by September/Prostate Cancer Month. Go to http://www.prostatecancerpetition.org and send everyone you know to this website.

Comment by Kathy Meade on July 31, 2008 at 8:25am

Fourth Annual
African American Prostate Cancer Disparity Summit
September 25 - 26, 2008


PHEN will host the fourth annual "African American Prostate Cancer Disparity Summit" on Thursday, September 25th and Friday, the 26th. The success and impact of the annual PHEN summits previously held on Capitol Hill are well recognized. These summits have enjoyed the support and active participation of many members of Congress. This has led to the 2008 Summit being held in conjunction with the U.S. Congressional Black Caucus Annual Legislative Conference (ALC). The 2008 summit program on Thursday will be held in the Rayburn House Office Building, while Friday's program will be held at the Washington Convention Center as one of the ALC "Issue Forums." Congressman Gregory Meeks (NY), the 2008 ALC co-chair, is our issue forum sponsor.

The Friday program will use a "Town Hall Meeting" format to outline an "action blueprint" to properly address the prostate cancer crisis. The blueprint will be presented to the new incoming Administration in 2009.

Both days of the summit will be exciting and educational. All of the sessions will include outstanding speakers with presentations on leading edge developments with the potential to impact on reducing the prostate cancer crisis. Attendees will also have ample opportunities to meet and network with others.
SUMMIT REGISTRATION
Summit registration is now open. There is no charge for registration, however attendees must register for the "Annual Legislative Conference" to attend the Friday program in the Washington Convention Center.
Summit Registration


PHEN SUMMIT SPONSORSHIP OPPORTUNITIES
The PHEN summit and other programs and initiatives are funded through sponsorships and charitable contributions. There are sponsorship opportunities available for the 2008 summit at various levels.
Information on Sponsorship Opportunities


ALC REGISTRATION INFORMATION
Congressional Black Caucus Legislative Conference registration information. ALC Registration Information

Comment by Kathy Meade on July 19, 2008 at 5:22pm

NEWS FROM…
CHAIRMAN BOB FILNER
HOUSE COMMITTEE ON VETERANS’ AFFAIRS
MEDIA ADVISORY
FOR IMMEDIATE RELEASE: July 17, 2008

http://veterans.house.gov
Veterans Cheated of Their Benefits
VA and Courts Ignore Promises Made to Veterans: CONGRESS MUST ACT
Washington, D.C. – Bob Filner, Chairman of the House Committee on Veterans’ Affairs, will hold a press conference on Wednesday, July 23 at NOON on the Cannon Terrace to announce the introduction of the Agent Orange Equity Act. The bill restores equity to all Vietnam veterans that were exposed to Agent Orange.
Who: Chairman Bob Filner, House Committee on Veterans’ Affairs
William G. Jeff Davis, Blue Water Veteran
Ron Abrams, Executive Director, National Veterans Legal Services Program
John Rowan, Vietnam Veterans of America
What: Introduction of the Agent Orange Equity Act, a bill to ensure that veterans receive their earned benefits
When: Wednesday, July 23, 2008 at Noon
Where: Cannon House Office Building Terrace
The intersection of New Jersey and Independence Avenues, S.E.
Washington, D.C. 20515
“We owe it to our veterans to fulfill the promises made to them as a result of their service,” said Chairman Filner (D-CA). “If, as a result of service, a veteran was exposed to Agent Orange and it has resulted in failing health, this country has a moral obligation to care for each veteran the way we promised we would. And as a country at war, we must prove that we will be there for all of our veterans, no matter when they serve. The courts have turned their backs on our veterans, but I believe this Congress will not allow our veterans to be cheated of their earned benefits.”
The Agent Orange Equity Act of 2008 would clarify the laws related to VA benefits provided to Vietnam War veterans suffering from the ravages of Agent Orange exposure. In order to try to gain a better military vantage point, Agent Orange, which we now know is a highly toxic cocktail of herbicide agents, was widely sprayed for defoliation and crop destruction purposes all over the Vietnam War Battlefield, as well as nearby nations. It was also stored on U.S. vessels and used for vegetation clearing purposes around U.S. bases, landing zones and lines of communication.
Currently, VA requires Vietnam veterans to prove “foot on land” in order to qualify for the presumptions of service-connection for herbicide-exposure related illnesses afforded under current law. This issue has been the subject of much litigation and on May 8, 2008, the Federal Circuit Court of Appeals upheld VA’s overly narrow interpretation. Congress clearly did not intend to exclude these veterans from compensation based on arbitrary geographic line drawing by VA.
The Agent Orange Equity Act of 2008 is intended to clarify the law so that every service member awarded the Vietnam Service medal, or who otherwise deployed to land, sea or air, in the Republic of Vietnam is fully covered by the comprehensive Agent Orange laws Congress passed in 1991. If enacted, this bill will make it easier for VA to process Vietnam War veterans’ claims for service-connected conditions that scientists have conclusively linked to toxic exposures during the Vietnam War and that are identified in current law. With this legislation, Congress will leave no doubt that the “Blue Water Navy” and all combat veterans of Vietnam are intended to be covered and compensated; thus ensuring that these veterans will receive the disability benefits they earned and deserve for exposure to Agent Orange.
###

More information click here

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