The Cancer Genome
Atlas Project Moves Ahead
The Cancer Genome
Atlas (TCGA) - launched as a joint effort between the National Cancer Institute (NCI) and the National Human Genome Research Institute (NHGRI) - is a
comprehensive and coordinated effort to learn from the principles of gene sequencing and apply that knowledge to the clinical cancer
setting. By building on the work that the NHGRI achieved through its sequencing of the human genome in 2003, the TCGA initiative
aims to accelerate our understanding of the molecular basis of cancer by using genomic analysis technologies to sequence the cancer
genome.
Specifically, TCGA
will pilot this project by studying the genomic make-up of three tumor types which are yet to be determined. If the pilot efforts
to study these three tumor types are successful, TCGA will then go on to systematically study the genome of every tumor type, ultimately exploring
the entire spectrum of human cancer.
According to TCGA, the initiative
will result in an "atlas" of the many genetic changes and mutations that occur in cancer, providing insight into the molecular pathways that can lead
to the uncontrolled growth of cancer cells when their normal patterns are disrupted. TCGA believes that this information will
enable significant advances in cancer research and lead to a myriad of new therapeutic targets for scientists to explore. These
leaps forward in research have the potential to trigger better disease management by physicians and improved clinical outcomes for
patients.
Throughout this project the
advocate perspective has been a welcomed voice, due in large part to both Dr. Anna Barker, Deputy Director of NCI and to Dr. Francis Collins,
Director of NHGRI. An advocate involved in the TCGA initiative views it as an exciting yet complicated project, because it could
be a challenge to make sure that the technology needed to perform the research is accessible and reproducible. Because there is so
much scientific and technological complexity with this program, TCGA has broken it into several components - such as gene sequencing or tumor
analysis
- so that researchers and institutions can apply for grants to undertake the components that match their areas of expertise.
Because the scope of the TCGA is
considered to be quite broad - with the NCI and NHGRI each contributing $50 million to the project - some within the cancer community are wondering
if those dollars could be better spent elsewhere. In light of NCI's major investments in other new areas of research such as
nanotechnology and the cancer Biomedical Informatics Grid (caBIG), it will be important that the community keep these agencies accountable for the
funds they are spending on these new initiatives, especially if it results in the loss of funding for other established projects such as the
Cooperative Groups and the SPORE programs.
And as data from the studies on
the first three tumor types begin to come in, it will also be important to build in opportunities for advocate and community oversight.
This will help ensure that the genomic information gleaned from patients' biospecimens is handled in a safe and ethical manner that supports
scientific advances while still protecting patients' privacy. The sharing of this data among researchers and institutions will be
vital in order to maximize its usefulness, but exactly how and when the data will be entered into the public domain - and who will be able to access
it - is still to be determined.
It is an exciting time as the
TCGA project gets off the ground, and advocates should stay apprised of the initiative's progress so that the community can continue to provide its
input on the important issues related to these advances in research and patient care.
For more information on the Human Genome
Project, please visit http://cancergenome.nih.gov/index.asp
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Advocates and Industry Struggle to See Eye-to-Eye on
Drug Pricing
In the last few years there has been a significant
advance in the treatment of many cancers, as newer therapies and targeted treatments have been developed by industry and then approved by the
FDA. As advocates, we recognize the cancer community's need for these treatments, which offer improvements over older therapies by
reducing side effects, improving long-term clinical outcomes such as survival, and giving hope to the patients and families affected by
cancer.
Because the advocate community recognized the promise
that these new therapies held, many of us partnered with industry to support the clinical trial enrollment for these treatments and then pushed FDA
for faster approval of these drugs. But as the initial excitement surrounding these new drugs has faded and reality has set in,
the community has been left to grapple with the exceedingly high prices that industry is charging for their new treatments. As a
community we are supportive of the availability of new treatment options, but as individuals and organizations trying to assist patients through the
maze of reimbursement and access to care, the pricing of drugs is an issue we must be able to better understand.
And pricing is clearly a hot topic - it
has been the subject of recent editorials in the New York Times and has been discussed at advocate conferences. Even
industry is beginning to recognize that this issue isn't going to go away on its own, and some companies are attempting to address it with the
advocate community. Both pharmaceutical and biotech companies have recently invited a corps of advocates -
including the Research Advocacy Network - to their campuses for discussions that include pricing. While these meetings were a step
in the right direction, the conversations on how these companies decided to price their drugs was not in sufficient detail to understand the
methodology.
The community understands that quality cancer drugs
require years of research and can be difficult to manufacture, contributing to a higher price. Most patients do not consider
paying for life-saving medicine to be a choice. We all know patients who are mortgaging their homes to pay for these treatments,
or who have access to these drugs through their insurance but can't afford the monthly co-pays which often exceed $1000.
And while the drug companies need to do a better job
of answering pricing questions in a straight-forward, open manner, we as advocates also need to learn pricing methodologies, ask tougher questions
and push for those answers when they are not readily forthcoming. We recognize the importance of our partnerships with these
companies - who often underwrite our programs and provide us with unrestricted educational grants - but an important component of true partnership is
honesty. As advocates we need our industry partners to be more informative about how drug prices are truly determined, and we need
to educate ourselves about the drug development process so that we can engage in productive dialogues on this subject. We must
also not be misled by statements made without full knowledge of the situation. For example, the press has reported that the price of a drug is
dependent on the type of cancer to be treated. Drugs are priced per unit. What affects price is differences in the dosage needed
to effectively treat different cancer types.
In an era of cutbacks throughout the healthcare
system, we must urge companies to control costs and look into reducing the prices of prohibitively expensive drugs. We must ask
for detailed explanations of their pricing models to understand exactly how these prices are determined. And most of all, we must
understand how the healthcare system works, so we can decide whether these prices are appropriate or whether our industry partners are over charging
the patients we serve.
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Announcements
ASCO re-launches People Living With Cancer
website. The patient information website has been redesigned to offer more user-friendly navigation and comprehensive content about
cancer. http://www.plwc.org/
The Alamo Breast Cancer Foundation ( http://www.alamobreastcancer.org/ )
invites advocates
to participate in the archived webcast on HOT TOPICS 2005 from the San Antonio Breast Cancer Symposium http://www.m3login.com/content/E86EED55-59CB-4880-833B-B76469363981/64.aspx
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issue....."
Research Advocacy Network
Activities
- May-June - Focus on Research Webconferences
- June 1 - Women Against Lung Cancer Annual
Meeting Advocacy Presentation
- June 2 - Focus on Research 2006 dinner at ASCO
- June 3 - TAILORx advocacy briefing at ASCO
- June 4 - RAN (Mary Lou Smith) oral presentation, ASCO Breast
Cancer General Session
- June 5 - RAN poster presentation at ASCO
- June 2-6 - American Society of Clinical Oncology (ASCO)
Annual
Meeting
- June 23-25 - ECOG Spring Meeting
- June 22-25 - RTOG Spring Meeting
Awareness Events
.........Coming up in June
- National Cancer Survivors Day - June 4th
- Sarcoma Awareness Month
Click here for a full listing of Awareness
Months/Events
We
need your help! Your Donation Makes a
Difference!
If you believe in the hope of research and the power of advocacy, you can help the Research Advocacy Network by sending a donation. RAN is an
exempt 501 c 3 organization and dependent on your support to keep going. Our mailing address is: East Rand Rd, Suite 175, Arlington Heights, IL
60004. Thanks!
Research Advocacy
Network Welcomes New Members!!!
Thanks to all of you who have recently
joined the Network. For those that have not yet please go to http://www.researchadvocacy.org/ and click on "Join". There are no dues for Network membership and
this
will assure that you receive all notices and have access to Network programs.
Editors and Authors: Elda Railey, Mary Lou Smith, Judy Perotti
Special thanks to
contributing author to this issue: Cheya Pope
Network News is funded in part by an
unrestricted educational grant from AstraZeneca.
Network News is currently published 10 times per year and includes articles on advocacy,
research results and activities. Please share Network News with your friends with the link above. Research Advocacy Network is an Illinois not-for-profit corporation and is designated as an
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