Advocacy
Action Center
In the News:
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IV / oral -
The Columbus Dispatch:
Cancer drugs should be treated equally
“It’s disturbing
to think that this inequity in coverage [for
oral versus IV administered drugs] may keep
patients from receiving the most-effective
treatment available for their cancer.”
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Urging GSK to maintain timely patient
access to Bexxar PAL
Advocacy Success:
Resolution 143 to make
September Blood Cancer Awareness Month.
The law passed! Please thank your representatives.
Patients
Against Lymphoma - letter to CMS on Radioimmunotherapy
reimbursement policy 2009-CMS-letter.PDF
"While PAL supports the Proposed Rule policy
of using ASP (Average Sales Price) methodology, we respectfully
request that claims default to cost-to-charge per MIPPA rather
than hospital claims. This would give patients the “safety net”
we need for continued access to these lifesaving drugs should a
default claims procedure be necessary."
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
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Tools and Resources for advocates:
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
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Advocacy
Groups
non-profit groups involved in the Blood Cancer Coalition
and other good works. |
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Advocacy
Programs (CARRA, FDA Patient
consultants programs, NCI Director's Liaison, IRB, etc.) |
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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. |
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Overcoming
obstacles to participation in clinical trials
Patient
Perspectives |
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Combining
Forces
the importance of working
together to fight for common goals |
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Conflict
of Interest
and how it can creates biases, erode trust, and sometimes
compromise our ability to make progress against the disease |
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Famous
People with Lymphoma
helping to
raise awareness |
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Health
issues on Congress.org
Alerts | Soap
Box | Letters
| Votes
| Bills
| Regulations
| Orgs |
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Lymphoma
Statistics
when you need facts to make the case |
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National
Biospecimen Network |
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Opportunities
and Challenges
in FDA Evaluations of New Drugs | Patient
Perspectives
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Patient
Perspectives
an archive of issues and commentary |
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State
Coverage for Health Care Costs for Clinical Trials
How Does Your State Measure Up? |
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The
PRG Plan
Progress Review Group Plan
developed
by esteemed experts and patient advocates |
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Institute of
Medicine report
‘Quality Chasm’
PDF
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Understanding Clinical Trial Design: PDF
A Tutorial for Research Advocates
Authored by Jane Perlmutter, PhD
for Research Advocacy Network’s Advocate Institute
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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. |
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