Prostate Cancer Advocacy and Action

Self-advocacy can be a positive experience and often gives a person a sense of control in a time of uncertainty. Advocacy doesn’t have to be time-consuming or difficult—it can be as simple as asking more questions at a doctor’s appointment. Furthermore, being a self-advocate doesn’t mean that you are responsible for your cancer care alone. Many people involve friends and family members to help find and sort all of the information necessary to make decisions regarding care and treatment.

ASCO has developed a webpage that may be helpful to men who are making decisions about prostate cancer. You can click here to view the page.

How would you modify the information on this page for men who are dealing with prostate cancer?

Distress,anxiety and depression can be a normal part of the cancer experience. How do you know if the problem is serious and needs treatment? NCCN and ACS have developed a tool that will help patients identify when they need to get support from outside sources.

* Introduction
* What Is Distress?
* How Do You Know When Distress Is Normal — or More Serious?
* Tools to Help Measure Your Distress
* How Can I Help Myself Cope with Cancer?
* Complementary Therapies
* Cancer Organizations as Resources
* Internet Resources
* Glossary

Work-Up (Evaluation) and Treatment Guidelines: Decision Trees

* Screening for Distress
* Treatment for Mild Distress
* Treatment for Moderate or Severe Distress

For additional information click here.

Everyone can do something to raise awareness of prostate cancer. When Michael Vinecki, announced to his family that he had sarcomatoid carcinoma, an especially aggressive form of prostate cancer his family decided that they wanted to do something to help find a cure and also to raise awareness.

To raise their inspiring story click here.

You can read their blog by clicking here.

To watch the video about  Athletes for a Cure click here. There are additional video links on the right of the page.

Musa Mayer a breast cancer advocate has written an article in the Journal of Clinical Oncology that will be of interest to those who work as prostate cancer advocates. The first few paragraphs are reproduced below.

In the years since 1989, when I was diagnosed with breast cancer, the advocacy movement has matured, and many of us have matured within it. It is a little embarrassing now to be confronted with my own naïveté, rereading what I wrote about breast cancer research and drug development a decade or so ago. Not only did I oversimplify the research process, underestimating its daunting challenges, but I was largely unaware of the distorting influence financial incentives can have on research. In the name of hope, I was far too willing to abandon critical thinking and jump onto the latest bandwagon. Like so many, my judgment was easily hijacked by upbeat media sound bites and by what I wanted to believe was true about breast cancer research, rather than the realities, which represent a far more complex and nuanced story.

Years of working with the US Food and Drug Administration (FDA) as a Patient Representative and in the Cancer Drug Patient Consultant Program1 following the uneasy interaction of regulatory and industry forces have offered some important lessons, as well as some sobering cautionary tales. As a member of the Institute of Medicine’s Forum on Drug Discovery, Development, and Translation, I have seen how decisions are made at earlier stages of drug development, and how critical they are to later investments and drug costs. This perspective has served to make me more aware of the ever-enlarging disconnect that lies between what science is making possible, and the current realities in our society.

To read the entire article click here.

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.