Advocacy
Action Center
make a difference:
NEW:
Agenda for Feb 2008 Meeting with Mr. Kuhn
regarding CMS / RIT:
CMS cover Letter | Report
ADVOCACY HISTORY:
ACTION
ALERT: The Senate is now debating legislation that
would jeopardize insurance coverage for cancer patients. It will take
you less than one minute to send a letter (composed by the
Leukemia and Lymphoma Society) to express your concern.
For
patients and doctors affected by Hurricane Katrina
NCI's Cancer Information Service:
1-800-4-CANCER (1-800-422-6237)
ASCO: Oncology practices in the Gulf Coast and
across the country open and able to treat people
with cancer who have been dislocated and are in
need of acute care.
www.asco.org/katrina
Advocacy
Alert: Please read
and endorse our letter
concerning CMS policy that would limit coverage of
off-label use of cancer
drugs
Please
review our perspective on why we must support The National Biospecimen Network
in order to facilitate rapid and significant progress against
lymphomas and all other cancers
Will Medicare/Medicaid
reimburse for Zevalin and Bexxar? Status of decision here.
Also how to make public comment about off-label use of these agents, which could be
very important to folks with MCL, and CLL/SLL, etc. cms.hhs.gov
Picture A Cure: Putting
A Face On Cancer - ACS Advocacy Action
"what if you could combine the ease of writing a letter with the impact of meeting face-to-face? You can through our advocacy tool “Picture A Cure.”
New
Medicare policy will deny access to novel therapies,
including treatments that win approval based on surrogate endpoints.
Click here to act
Call the
National Bone Marrow Donor program at
800 MARROW2
and become a
registered donor.
Call now!
FDA
transparency:
A challenge to both Congress and the FDA to permit
public disclosure at critical times in drug development for deadly
diseases. -
Click
here to act
|
Alternative
ways to write your representatives
 |
We are looking into the problem:
Click here to write to your
representatives.
Click here
to write to your senators |
| Advocacy
Groups
non-profit groups involved in the Blood Cancer Coalition
and other good works. |
| Advocacy
Programs (CARRA, FDA Patient
consultants programs, NCI Director's Liaison, IRB, etc.) |
|
Clinical
Trial Design and Participation Consulting with
Patients, the FDA, Drug Sponsors, the NCI, and community
physicians. Establishing credibility through hard work and financial independence.
|
| Combining
Forces
the importance of working
together to fight for common goals |
| Conflict
of Interest
and how it can creates biases, erode trust, and sometimes
compromise our ability to make progress against the disease |
| Famous
People with Lymphoma
helping to
raise awareness |
|
Health
issues on Congress.org
Alerts | Soap
Box | Letters
| Votes
| Bills
| Regulations
| Orgs |
|
Lymphoma
Statistics
when you need facts to make the case |
|
Opportunities
and Challenges
in FDA Evaluations of New Drugs Patient
Perspectives
|
|
Patient
Perspectives
an archive of issues and commentary |
|
State
Coverage for Health Care Costs for Clinical Trials
How Does Your State Measure Up? |
| The
PRG Plan
Progress Review Group Plan
developed
by esteemed experts and patient advocates |
|
Institute of
Medicine report
‘Quality Chasm’
PDF
| PDF-Help
"the Quality Chasm report has attracted much less public attention than
"To Err Is Human" did, but for the serious student of health care quality and the serious leader of needed change, it signals the possible dawning of a new and persistent sense that the U.S. health care system’s performance in many dimensions, not just safety, is unacceptably far from what it should be." |
| What
is advocacy?
wpas-rights.org
Identifying Your Biases
All people develop attitudes, preferences and
biases. However, in order to be an effective advocate, you
must be able to recognize your own attitudes, preferences, and
biases. If you don't your attitudes are likely to interfere
with your judgment. You could take positions which reflect
your biases, rather than the choices of the people for whom you
advocate. You may interpret the actions of others cynically,
or naively, and thereby lose your ability to work effectively for
the interests of others. |
|
