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Making a Difference in Government Programs and Policies
About Making a Difference in Government Programs and Policies
Working with Local and State Government Cancer Programs
Working with National Government Cancer Programs
"I found out I had prostate cancer over 10 years ago.
During treatment, I got involved in a local support group for prostate cancer
survivors. The more I talked with the other men in my group, the more I saw how
little most of us knew about the disease. I made it my mission to help men
learn as much as they could about prostate cancer.
I started out talking about getting screened for cancer to the men I knew--my
family, friends at church, and my neighbors. Then I started going to prostate
cancer meetings so I could get information to take back to my community.
Later on, someone nominated me to be on a government committee about funding
for prostate cancer research. Since then, I have been on lots of government
committees to help make decisions about cancer research. When I'm working with
these groups, I speak for the men back home and all the other men who also face
prostate cancer.
The way I see it, we have to play a role in our government. You can't just sit
in front of your TV and complain. If you don't make a change, then who is going
to do it? The bottom line is that you have to get out there and make a
difference."
— Jim, prostate cancer survivor, 65
Survivors and their families can make a difference in the types of programs the
government offers to people with cancer (or people at risk for developing
cancer). They can bring an important community perspective to government
programs.
Government programs often seek advice about how best to develop cancer
screening programs, approve new medicines, or develop new research priorities.
Many local, county, and city health departments have cancer education,
awareness, and screening programs. To ensure that programs work well, these
departments often ask survivors and their family members to get involved. For
example, a local health department might ask for advice about a cancer
screening program or a new brochure.
States also offer programs to reduce cancer deaths and improve cancer care.
These programs may focus on cancer education, prevention, early detection, or
treatment. For example, a state may run a program educating older men about
prostate cancer. These state programs may need help finding the names of local
organizations to work with them.
Just as local governments need the advice of consumers, the Federal Government
has several programs that seek the advice of cancer survivors and their
families. Several programs are described below.
Government Program
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Description
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Consumer Advocates in Research and Related Activities (CARRA)
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The National Cancer Institute seeks consumer input and feedback on many of its
policies and programs.
The CARRA program is described in more detail in
Federal Government Programs That Welcome Consumer Involvement.
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Director's Consumer Liaison Group (DCLG)
Liaison Activities Branch
6116 Executive Blvd., 3068A
Bethesda, MD 20892-8324
Tel: 301-594-3194
http://la.cancer.gov
e-mail: liaison@od.nci.nih.gov
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The DCLG is the all-consumer advisory group for the NCI. Consumers look at a
range of issues, programs, and research projects and make recommendations based
on their consumer perspective. There are 15 consumer advocates on the DCLG,
each serving a 3-year term. They are chosen to reflect the diversity of those
whose lives are affected by cancer.
To learn more about the DCLG (including a membership roster and meeting
summaries), go to the NCI Web site at www.cancer.gov, click on "About NCI," and
then select "Advisory Boards and Groups."
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Several FDA programs have patients and consumers on their scientific and
technical advisory committees. Training is provided to people who are selected.
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| Cancer Drug Development Patient Consultant Program
Office of Special Health Issues
(HF-12)
Food and Drug Administration
5600 Fishers Lane
Rockville, MD 20857
Tel: 301-827-4460
www.fda.gov/oashi/home.html
e-mail: oshi@oc.fda.gov
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This program provides cancer patient advocates an opportunity to participate in
the FDA drug review regulatory process. Patient advocates serve as patient
consultants in the preapproval, clinical trial phase of cancer drug
development. Patient consultants provide advice to the FDA and drug sponsors on
topics such as clinical trial design, endpoint determination, expanded access,
protocol development, and clinical trial patient recruitment strategies.
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Cancer Patient Representative Program
(Address same as above)
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This program provides the FDA and its advisory committees the unique
perspective of patients and family members directly affected by a serious or
life-threatening disease.
Patient Representatives serve on advisory committees when a product or therapy
(drug, biologic, or medical device) related to a serious or life-threatening
disease is under review. Patient Representatives must be well informed about
patient concerns and have the ability to understand and actively participate in
advisory committee discussions.
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Consumer Representative Advisory Committees
Food and Drug Administration Advisory Committee Oversight and Management Staff
(HF-4)
5600 Fishers Lane, Room 16-85
Rockville, Maryland 20857
Tel: 301-827-1220
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These committees seek input from consumers on medical and scientific issues.
Consumer representatives must be able to analyze data, understand research
design, discuss benefits and risks, and evaluate the safety and effectiveness
of products under review.
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Ways to Get Started-- Government Programs
Decide if you want to get involved at the local, state, or national level. You
may want to start out in your home county or state.
If you think you may be interested in local cancer programs, a good way
to start is by speaking with the person in charge of cancer-related programs at
your local health department. Ask for information about the programs they offer
and find out how you can help.
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To find local cancer programs, look in your telephone book under "Departments
of Health" or "Health Departments."
If you think you may be interested in state cancer programs, you can speak to
someone who works on cancer in your state health department. Ask for
information about their programs and find out how you can help.
If you think you may be interested in national programs:
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Learn more about the programs listed in this section by calling, writing a
letter, or looking at their Web sites.
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Request applications for the programs that interest you. Even if you find they
are not right for you, you can share them with others.
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After you have worked in government programs and policies for a while, think
about how you liked this experience. One way is to fill out
Thinking About Your Choices: A Guide.
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