Patients
Against Lymphoma was founded in 2002 by patients and caregivers directly affected by lymphomas, a kind of blood cancer that has
risen 4% annually between 1970 and 1990.
We
provide timely access to
evidence-based information on lymphoma and its treatments;
-
and
engage the research community - providing
patient perspectives on the direction of clinical research and the design of clinical trials.
We
also help patients and caregivers to more critically evaluate the strengths and weaknesses of medical information; and help scientists and drug sponsors to see clinical trial design from
the patient perspective.
Helping
patients to think like scientists;
and scientists like patients.
We
continuously update our web site in response to visitor questions and patient needs, guided
by our scientific advisors and the published medical literature.
Day
or night, and without leaving home,
patients can find answers
in total
privacy
and without concern
about asking a “dumb” question.
What
sets us apart is our independence from health industry funding. We have chosen this path in order to provide unbiased perspectives on clinical research, drug approval, and access to the standard of care ... ensuring that our advocacy efforts are driven only by patient needs.
We advocate for clinical trial design that harmonizes research goals (finding reliable answers)
with meeting the clinical needs of the participants (reasonable treatment decisions). Study design must achieve both goals in order to make progress against lymphomas.
To
make better progress against the disease, more patients
must enroll in clinical trials. How else?
Slow enrollment delays new drug and protocol evaluations,
contributes to costs, and raises the financial risk of
developing new drugs ...
but most importantly, delays cost lives.
Because
there's an urgent need for safer and more effective therapies, we provide a clinical trial locator service that makes it easy for
patients and oncologists to locate
clinical trials, specific to lymphoma. Importantly, we ask for no identifying information of persons who use this
service.
We
can only consider what is known to exist.
In
addition to the content we develop, we link patients and medical
professionals to reputable sources of information on a comprehensive
list of topics, specific to lymphoma:
Clinical trials
for lymphoma based on ready-to-use queries of ClinicalTrials.gov by:
treatment type
lymphoma subtype
phase,
first line, stage, other ....
state and country
Clinical
trials of interest, by setting
Background information about
lymphomas, including:
About lymphomas – simplified and
detailed explanations.
About transformation, diagnosis and
pathology, and prognostic indicators
About the lymphatic system;
background articles on biology and immunity.
Resource pages on subtypes of
lymphoma – includes subtype-specific queries of PubMed, ASCO,
and ClinicalTrials.gov
Background information on incidence rates of
lymphoma,
and known risk factors.
Background information about standard and
investigational treatments, and complementary practices.
Research news and notices of special
events, with commentary.
Resources to help patients locate
medical experts, cancer centers, and second opinions on pathology
evaluations.
Support resources on a variety of
topics:
communicating with doctors
- becoming an active and informed partner in our care
careers and cancer
drug payments, insurance and
financial support
immunization guides
palliative care
ports
support groups . . .
Advancing
and advocating for:
Clinical testing of biotherapies
(such as immunotherapies) on patients with indolent lymphomas who do
not require therapy in order to take advantage of:
Better immune competence
Less tumor burden
Less prior exposure to toxic treatments
Potential to improve quality of life
Potential to learn without precluding
use of standard treatments
Gene profiling technology in order to
identify clinical subtypes of lymphoma to help rationally select
treatments and more rapidly identify molecular drug targets.
Optimal care for all cancer patients as determined by up-to-date evidence-based
clinical data, unencumbered by insurance or regulatory policies.
Shared decision making.
Encouraging
translational research at the NCI
Transparency
in the drug evaluation system.
Leading in efforts to:
Educate community physicians and patients about
the importance of participating in clinical trials.
Educate patients and caregivers about
how to
recognize possible bias and conflict of interest in scientific data, and
medical claims; and how to distinguish between weak and strong medical
information.
Encourage the
cooperation of all lymphoma and cancer organizations so that we may better achieve our common
goals and do effective advocacy work.
Improve access to the compassionate
use of appropriate investigational
therapies for patients in need who are not eligible to participate in clinical
trials.
Increase public awareness of lymphoma, including risk factors, symptoms, the
burden of the disease, and research opportunities.
Provide online peer-to-peer support
groups that provide opportunity for patients and caregivers to
encourage each other and exchange information.
Provide online research tools and
educational materials for all individuals who
support lymphoma patients.
Provide informed patient perspectives on
clinical trial design and FDA decisions, and to
vigorously represent the patient's
perspective in matters of concern.
Provide well-researched answers to
every visitor question in a timely
manner.
–Advocating
for cooperative, standardized biospecimen resources supporting correlative and
translational clinical research.
(Research that can more efficiently translate insights about the
biology of tumors into better therapies for patients, and tailoring such
therapies to individual patients.)
–Consulting
on study design to help investigators and drug sponsors identify ethical
issues and aspects of a study that may be desirable or undesirable to
patients considering trials.
Participant in the "Chronic GvHD: The Next Frontier in Transplantation Medicine", NCI 2005
Providing patient perspectives on clinical trial design.
Participant in the SEER workshop, NCI, 2005.
Providing perspectives on the need to provide statistical information
on the subtypes of lymphoma - that there is a significant gap
in the information provided as of 2005. See our follow up letter for details
Participant in the NCI National Biospecimen Network Workshop, NCI, 2005
Providing patient perspectives on The Cancer Genome Atlas (TCGA) -
“a large-scale collaborative effort by the National Cancer Institute (NCI) and the National Human Genome Research Institute (NHGRI) to systematically characterize the genetic changes that occur in cancer.”
In
memory of Page Irby, dear friend,
colleague, and founding member
and Charles Brennan, beloved director and financial advisor
to PAL
March 11th, 2008: Page Irby died after 14 years of living with non-Hodgkin's lymphoma. We are deeply saddened today to learn of her passing. Page was valued friend, colleague, and founding member of PAL. Page was and will remain an inspiration to me in her approach to life. As you know, she was committed to helping others to navigate the medical system and was an articulate advocate for becoming an informed and proactive patient.
May 2, 2008: Charles Brennan, a member of our board since PAL's inception, passed away this morning. We met in 1997 when his wife, Penny, was receiving treatment for lymphoma, and we became fast and very close friends. He had recent surgery for an aneurysm which led to a stroke, followed by an infection. In addition to our friendship, Charles, a retired CPA with considerable corporate experience, provided invaluable guidance on how to administer the accounts of PAL. He leaves behind many close friends and fond memories.
Helping
patients to think like scientists; 
