Legislative Item of
Interest to patients:
State your issue at the beginning of the letter.
Try not to exceed
Let your elected
official know how this issue affects you personally.
Let your lawmaker
know you live in their district.
In closing, ask
for a written response to document your lawmaker's
Call the National Bone Marrow Donor program at
800 MARROW2 and become a registered donor.
IV / oral -
The Columbus Dispatch:
Cancer drugs should be treated equally
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.”
Urging GSK to maintain timely patient
access to Bexxar PAL
Resolution 143 to make
September Blood Cancer Awareness Month.
The law passed! Please thank your representatives.
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
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.
patients and doctors affected by Hurricane Katrina
NCI's Cancer Information Service:
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.
Alert: Please read
and endorse our letter
concerning CMS policy that would limit coverage of
off-label use of cancer
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
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.”
Medicare policy will deny access to novel therapies,
including treatments that win approval based on surrogate endpoints.
Click here to act
A challenge to both Congress and the FDA to permit
public disclosure at critical times in drug development for deadly
here to act
Legislative Item of Interest
Write to Your Elected Representatives
Use the Zip code tool to write to your representatives:
Senators, President and Congressman
<== See suggestion item on the left and tips.
Tools and Resources for advocates:
ways to write your representatives
We are looking into the problem:
here to write to your
to write to your senators
An Advocate's Perspective (compiled) PAL
non-profit groups involved in the Blood Cancer Coalition
and other good works.
the importance of working
together to fight for common goals
and how it can creates biases, erode trust, and sometimes
compromise our ability to make progress against the disease
People with Lymphoma
issues on Congress.org
Alerts | Soap
Box | Letters
when you need facts to make the case
in FDA Evaluations of New Drugs | Patient
an archive of issues and commentary
Coverage for Health Care Costs for Clinical Trials
How Does Your State Measure Up?
Progress Review Group Plan
by esteemed experts and patient advocates
Understanding Clinical Trial Design: PDF
A Tutorial for Research Advocates
Authored by Jane Perlmutter, PhD
for Research Advocacy Network’s Advocate Institute
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.