Prostate Cancer Advocacy and Action

Senate Committee on Health, Education, Labor, and Pensions Thursday, May 8, 9:00 a.m.

Witness Testimony

Panel I

Elizabeth Edwards, J.D., Senior Fellow, Center for American Progress, Washington, DC

Lance Armstrong, Chairman and Founder, Lance Armstrong Foundation, Austin, TX

Steve Case, Chairman and CEO, Revolution Health, Washington, DC

Panel II

Edward Benz, M.D., President, Dana Farber Cancer Institute, Boston, MA

Greg Simon, J.D., President, Faster Cures, Washington, DC

Hala Moddelmog, M.A., CEO, Susan G. Komen Foundation, Dallas, TX

Witness TBD

If you plan to attend the hearing will be in the Hart Building , SH-216.

The hearing will also be available online. Click here for more information.

Hemo/Onc Today published an editorial about the status of prostate cancer research. The author, Donald L. Trump, MD compares the status of knowledge in prostate cancer compared to breast cancer. He says:

Important progress has been made and new leads established in improving our understanding of prostate cancer and improving the care of patients with this disease. New work on the etiology of the disease yields evidence for association with a heretofore uncharacterized virus as well as strong evidence of the polygenic influences on prostate cancer risk.

Increasingly precise algorithms are being developed to enhance the clinician’s ability to predict treatment failure after initial therapy for apparently localized disease. There are now clearly established treatment plans that improve the quantity and quality of survival in men with metastatic disease, progressive despite androgen deprivation.

Despite the presence of some good news, I would like to reflect for a moment on how little progress we have made in the use of systemic treatment of high-risk, localized or early recurrent disease. First, why should we expect or demand progress in this disease condition?

It is certainly an oversimplification and the analogy may not be apt, but let us compare breast and prostate cancer. Similarities between these two diseases are multiple (see table 1). National Comprehensive Cancer Network guidelines provide 91 pages of treatment approaches for subcategories of women with breast cancer and 32 pages of guidelines for men with prostate cancer.

He concludes by saying,  Oncologists and patients should demand more!

This is a must read for anyone interested in prostate cancer. It shows how important it is for all of us to  work for more and well focused research.

To read the entire article click here. 

How do scientists discover new genetic “biomarkers” to diagnose and treat disease early? The research community cites access to high quality biospecimens as the single most critical need for conducting today’s generation of molecular or genomic experiments. Yet the field of biospecimens has lagged behind virtually every other area of medical research.

Biobanks are storage facilities for biospecimens. men with prostate cancer should talk to their doctors about opportunities for their biospecimens to be used in prostate cancer research.

To listen to a podcast about biobanks click here. 

To learn more go to the biobankcentral.org website by clicking here.

Faced with a cancer diagnosis, effective communication between doctors and patients is crucial. Yet, often, a doctor’s style or time constraints don’t meet the patient’s needs. Other times, patients are too overwhelmed with the confusion of a diagnosis to absorb all the information they need. In the current podcast, CR correspondent Kevin Begos talks to patients and a doctor about the importance of good communication—and how to develop a relationship that works for both doctor and patient.

To listen to the podcast click here.

Because I am a widow, I am acutely aware of the problems in our medical system with palliative care. One of the problems is that people are not introduced to palliative care until very late in their disease process. The NCCN has released new palliative care guidelines.

HemOnc Today ran an article today about the new guidelines. I am not sure if this information will be widely available in the prostate cancer community. As advocates we will have to educate patients and tell them to ask for doctors for services if they are not offered.

Below is a quote from the article:

The NCCN definition states: “The goal of palliative care is to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of disease or the need for other therapies.”

Care throughout disease course

The provision of palliative care throughout the disease course (from diagnosis through treatments and at end of life) benefits the cancer patient and the family by offering a support system along the disease trajectory.

Palliative care involvement also supports the efforts of the patient’s oncology team. Regardless of prognosis, palliative care aims to address physical, social, psychological and spiritual aspects of having a life-threatening or life-limiting illness and to control symptoms and eliminate suffering.

The 2007 NCCN Palliative Care Guidelines (available at www.nccn.org) offer a framework for integrating palliative care into current oncology practice. By providing palliative care to patients when they initially present with symptoms and alongside disease-modifying therapies, patients and families are offered a clear understanding of the natural history of their disease and its prognosis. Essentially, the early integration of palliative care provides patients with comprehensive cancer care.

To read the the entire article with tables go to this link.

By supporting and disseminating this document will we be able to make a difference for men and women dealing with the realities of prostate cancer?

The FDA has a news article on their website related to a bill that will be introduced this week.

A bill establishing a comparative-effectiveness research institute is scheduled for introduction in the Senate this week, congressional staffers say.

The Comparative Effectiveness Research Act of 2008, sponsored by Sens. Kent Conrad (D-N.D.) and Max Baucus (D-Mont.), would establish an institute to evaluate the effectiveness of different drugs and medical devices that exist for the same treatment.

The creation of such an organization was the subject of a public meeting held last week by the Medicare Payment Advisory Commission (MedPAC), an independent agency that advises Congress on issues affecting Medicare. The group supports a comparative-effectiveness program and recommends that Congress establish an independent entity to sponsor and disseminate such information. The entity would conduct prospective, head-to-head clinical trials of competing products as well as clinical reviews.

In a report last June, MedPAC said not enough credible, empirically based information is available for providers and payers to make decisions on alternative treatments and diagnostics for the most common conditions. New services become routine medical care without their comparative effectiveness being taken into account, the commission said.

Recently, Centers for Medicare & Medicaid Services’ Chief Medical Officer Barry Straube said Medicare would have to address comparative-effectiveness and cost-effectiveness issues to achieve greater value for the program. MedPAC agreed. One committee member said the research needed today is not to support another device or “me-too drug” but to promote value. The commission also advised that the institute have no role in making or recommending coverage or payment decisions.

It is a controversial topic and all sides need to be considered.

It is important that patients have information that compares various treatments for their decision making process.

At the same time we do not want decisions made for patients based on cost.

We also want to be sure that Quality of Life issues are considered in decision making.

I have included some links that will give you some background information on comparative effectiveness research.

Click here for information from BIO

Click  here for information from the CommonweathFund

Click here for information from Congressional Budget Office.

 Faced with a cancer diagnosis, effective communication between doctors and patients is crucial. Yet, often, a doctor’s style or time constraints don’t meet the patient’s needs. Other times, patients are too overwhelmed with the confusion of a diagnosis to absorb all the information they need. In the current podcast, CR correspondent Kevin Begos talks to patients and a doctor about the importance of good communication—and how to develop a relationship that works for both doctor and patient.

This podcast for both clinicians and patients may give each some understanding of the problems that the other experiences.

To listen to the podcast click here.

THE TRUTH ABOUT CANCER PREMIERES ON PBS APRIL 16, 2008

Emmy Award-Winning Filmmaker Linda Garmon Takes on the Question “How Far Have We Come in the War on Cancer?”

News Journalist and Cancer Survivor Linda Ellerbee Hosts Post-Broadcast Panel Discussion

What is the truth about cancer? Is it the same deadly killer it was 30 years ago - or are we making progress? Find out through the poignant stories of patients battling the disease. Written, produced, and directed by award-winning filmmaker Linda Garmon, The Truth About Cancer premieres nationally on PBS Wednesday, April 16, at 9:00pm ET (check local listings).
Comprised of a 90-minute documentary followed by a 30-minute panel discussion, the two-hour broadcast event takes a deep look inside the cancer field gauging how far we have come in this decades-old war and asking, “Why does anyone still die of cancer?”

Part science, part personal catharsis, part character-driven storytelling, The Truth About Cancer is narrated by Garmon, who tells the moving story of her husband’s battle with cancer. Over the course of the film, Garmon returns to the same Boston-area hospitals at which her husband was treated, and exposes startling truths about survival rates of metastisized cancers, and the limited success of drugs and clinical trials. Interwoven throughout are the stories of three additional cancer patients, and their families and doctors, as they navigate the deeply personal decisions surrounding the disease. The documentary also follows several medical professionals working to promote screening, research the latest developments in cancer treatment, and help patients and their families live with a cancer diagnosis.

“This film makes it clear that it’s very much a part of American culture to believe that if you fight hard enough, you can beat cancer. But when it comes to having metastatic cancer, your survival depends on the biology of your cancer cells, and whether they are susceptible to state-of-the-art treatment,” says Garmon. “In sharing my husband’s story and the stories of other patients, I hope to shed light on this important truth.”

The Truth About Cancer is the third installment of PBS’s Take One Step-a campaign offering primetime programming and outreach tools to help people take the first step towards better health. Following the 90-minute documentary is a 30-minute panel discussion entitled Take One Step: A Conversation About Cancer with Linda Ellerbee. News journalist and breast cancer survivor Linda Ellerbee moderates the dialogue featuring a panel of doctors, all of whom are cancer survivors themselves. Having sat on both sides of a cancer diagnosis, the panel shares their unique perspectives, offering both personal and professional observations on how to handle a cancer diagnosis, what to say to loved ones, how to advocate for yourself, and how to best live your life, with cancer. Panelists include U.S. News and World Report health editor Dr. Bernadine Healy; breast cancer surgeon and Breast Cancer Research stamp mastermind Dr. Ernie Bodai; neurologist and leading palliative care expert Dr. Richard Payne; and counseling psychologist Dr. Paul Brenner.

The Truth About Cancer is a Carousel Films LLC Production for WGBH Boston.
Laurie Donnelly is Executive Producer for WGBH. Funding for The Truth About Cancer is provided by Susan G. Komen For The Cure and the John Wayne Cancer Foundation. Additional funding is provided by the Corporation for Public Broadcasting and public television viewers.

About WGBH Boston
WGBH Boston is America’s preeminent public broadcasting producer, the source of one-third of PBS’s primetime lineup and companion online content as well as many public radio favorites. WGBH is a pioneer in educational multimedia (including the Web, broadband, and interactive television) and in technologies and services that make media accessible for people with disabilities. WGBH has been recognized with hundreds of honors: Emmys, Peabodys, DuPont-Columbia Awards-even two Oscars. In 2002, WGBH was honored with a special institutional Peabody Award for fifty years of excellence.
For more information, visit wgbh.org.

Media Contact:
Ann Petruccelli
Senior Account Executive
WGBH Boston
617.300.5331
ann_petruccelli@wgbh.org

Photography Contact:
Erika Denn
Assistant Account Executive
WGBH Boston
617.300.5346
erika_denn@wgbh.org

Since so many men are using medications off-label this program should be of interest to prostate cancer advocates.

About half of the use of anticancer chemotherapy drugs is for “off-label” indications – uses not listed on the FDA-approved label.  Public and private payers typically cover off-label indications for anticancer drugs if they are listed in the compendia or supported in peer-reviewed medical literature. Coverage and payment for off-label uses of anticancer drugs has been a critical tool in the battle against cancer.

Both public and private payers are examining their choices of compendia for determining medically-accepted uses of anticancer drugs.  CMS recently established an annual compendia review process.  CMS will accept requests for changes to its approved list of compendia, and will publish final decisions by July 15 after collecting public comments.  CMS’ decisions are poised to have an immediate impact on Medicare coverage. Concurrently, private payers are endorsing specific compendia for use in making coverage decisions for chemotherapy drugs.

Join Avalere Health for a 90-minute interactive audio conference that will highlight:

• The evolving landscape of compendia and their use in coverage decision-making by Medicare and private payers
• CMS’ current efforts to revise the official list of approved compendia
• Trends in the use of compendia by commercial payers
• Variations in use of compendia at the regional and local levels by medical directors
• Impact of state mandates on the use of compendia

Click here to register.

Course Objectives:
Our goals in this course are to provide consumer advocates with the tools they need to:

• Successfully navigate the world of medical information,
• Critically appraise research studies,
• Influence the creation of responsible public policy in healthcare, and
• Help the people they serve to make healthcare choices based on the best available evidence.

Course Description:
In these six modules, we will illustrate key concepts with compelling real-world examples, covering the following topics and issues:

• Module 1. INTRO: What is evidence-based healthcare and why is it important?
• Module 2. ASK: The importance of research questions in evidence based healthcare.
• Module 3. ALIGN: Research design, bias and levels of evidence.
• Module 4. ACQUIRE: Searching for healthcare information. Assessing harms and benefits.
• Module 5. APPRAISE: Behind the numbers: Understanding healthcare statistics. Science, speed and the search for best evidence.
• Module 6: APPLY: Critical appraisal and making better decisions for evidence-based healthcare, Determining causality.

Click here to take course.