Approved
Essex County Cancer Coalition
Meeting Minutes
The Priory Restaurant, St. Joseph's Plaza
Thursday, June 9, 2005, 4:00-6:00 pm
Attendees: Joyce Bates, Alan Beitler, Beverly Brevard, Bill Bullock, Natasha
Coleman, Diana DeCosimo, Zelia DeSouza, Lois Greene, Isaac Hopkins, Dane Jordan,
Jung Kim, Stephanie Kip, Barbara LoDico, Catherine Marcial, Rhonda McCathern, Kimi
Nakata, Johana Nampaso, Ana Natale-Pereira, Grace Nyatome, Nancy Paradis, Punam
Parikh, Natalie Pawlenko, Terri Pietsch, Christine Reynolds, Daniel Rosenblum,
Anthony Santiago, Robert Schermer, Virgil Simons, Azadeh Tasslimi, Marielos Vega,
Rich Ward, and Stan Weiss
Pre-Excused: Jeanne Ferrante, Mike Festa
ENACCT Announcement – Jung
ENACCT is a community-driven outreach and education program to increase
awareness about cancer clinical trials. Members were requested to support the
Coalition in applying for this grant to increase awareness and participation in cancer
clinical trials of Essex residents with the primary focus on those residing in the greater
Newark area.
Introductions were made amongst all attendees.
Cancer Clinical Trials Connect –
Presentation by Susan Goodin, PharmD, Director of Pharmacy, Associate
Professor of Medicine at CINJ and the Creator of the “Cancer Connect” website
Dr. Goodin presented the Cancer Trials Connect website (www.njctc.org). There is a
new Spanish version of the site (launched in the end of March), along with a new layout.
The website is not exclusive to CINJ affiliates; rather it is available to the public with
information on over 400 cancer clinical trials. The database of clinical trials is updated
daily. ALL institutions with ANY type of cancer trial are encouraged to submit their
information.
The site also provides educational information on:
 What clinical trials are, what happens in a clinical trial, the benefits and risks of
participation, and the patient’s rights and protections;
 Various cancer treatment and coping resources;
 Insurance coverage.
The site is HIPAA/IRB compliant in that the personal and medical information persons
input is kept confidential in accord with approved protocols -- the CINJ IRB served as an
adviser during the creation of the website to ensure the site was IRB compliant.
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The site itself has been translated into Spanish and is the only one of its kind in the
country. However, the clinical trial information is only in English. Due to IRB
regulations, all of the information would have to be translated by a certified Spanish
translator. To account for this, patients viewing the site in Spanish are instructed to
print out the clinical trials information and discuss it with their physician.
Ways to search trials:
1. By cancer type,
2. By trial classification: therapeutic, prevention, supportive care
3. By Principal Investigator
4. Trial ID
5. Trial Phase: Phase I, II, III, IV
6. Within distance of specific zip code
There are 4 easy steps to the registration process:
1. Create a user name and password. You may create a user name which is not
your own name, and which does not identify you personally.
2. Select a cancer type.
3. Complete a profile about your cancer diagnosis & treatment.
4. Enter your contact information.
Relatives/friends may log-in on behalf of the patient. If one designates him/herself as a
family member friend, information that was requested on behalf of the patient is sent to
that person as well as information on prevention trials for the requestor, since he/she
has already expressed a degree of interest.
Question: Are pharmaceutical trials included?
Answer: Yes.
Each cancer clinical trial must be scientifically approved by one of the following
agencies:
 National Institute of Health,
 National Cancer Institute (NCI),
 Veterans Administration,
 Department of Defense (DOD),
 Food and Drug Administration approved Investigational New Drug (IND) agent
The New Jersey Working Group, which consists of the largest insurance companies,
researchers, cancer patients, healthcare professionals, and pharmaceutical industry
representatives, came to a consensus agreement and now all New Jersey cancer
patients have insurance coverage for the routine healthcare costs of phase I, II, and III
approved cancer clinical trials. The website provides extensive educational information
on various contingencies for coverage of clinical trials.
The site has a toll free call center (1-866-788-3929) open Mon-Fri 9am-5pm; the call
center offers a Spanish language option. Overall it does not receive much volume.
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CCTC is trying to increase visibility through outreach: handouts, posters, calling cards
(English/Spanish), advertisement with NJ Transit, etc.
In the website's 2-year existence, it has had 4 million hits. The majority of users are
family members & friends of cancer survivors.
Dr. Goodin has handouts, small posters, calling cards, etc. for Clinical Trials Connect,
which are available for people who would like to distribute them at health fairs and other
events. She is trying to get NJ Transit to advertise the website on its buses.
Question: Is there a mechanism in place that allows you to track trial enrollment from
the website?
Answer: No, HIPPA regulations do not allow for that. However, during the registration
process, the member is asked, "Can we contact you?"
Information that is available: most common searches, zip code where visitors are from,
common tumor sites, testimonials from people who have used the website.
The website also contains results from clinical trials. However, only trials whose results
have been published are available. CINJ has a Scientific Review Board.
Review and Approval of Mission Statement
The Leadership Group discussed the mission statement earlier in the month, and a
revised mission statement was distributed. This was reviewed by all members present
and unanimously approved by the Coalition pending a few stylistic and minor
grammatical changes that will be provided by Bob. Stan pointed out that the change will
help facilitate the ENACCT application, since support for clinical trials was explicitly
added.
Clinical Trial--Chemoprevention of Breast Cancer – Diana
Dr. Norman Lasser, UMDNJ, is conducting a breast cancer chemoprevention study,
sponsored by the National Cancer Institute of Canada. This trial will study the effect of
exemestane, an aromatase inhibitor, in the prevention of breast cancer in high-risk
women. It is open to postmenopausal women, who will be followed for 5 years. It is a
multi-center, multi-national, randomized, double-blinded, placebo controlled study. The
study will start soon, after obtaining IRB approval.
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UPDATES FROM COMMITTEES:
Leadership Council –Azadeh & Punam

Representatives from the Coalition presented 5 posters at the NJ Cancer Retreat
(April 27, 2005). Dan presented on epidemiologic data from the capacity and needs
assessment; Ana and Marielos presented 2 posters on colorectal cancer screening
among Hispanics; Azadeh & Punam presented one poster on the identification of
cancer priorities in Essex County and implementation of recommendations by the
Coalition.

The Coalition coordinators presented a draft implementation plan that outlines
the Coalition's future activities. The plan will be re-examined at future Leadership
Council meetings.

Created an organizational chart depicting the coalition's structure and listing
organizations that are represented with key contacts. The coordinators will be
distributing these via the Coalition's contacts.

The coordinators are developing a brochure and a draft was presented to the
Leadership Council at the June meeting. The coordinators are working on incorporating
modifications suggested by the Leadership Council, and warmly welcome
ideas/suggestions from all members for a logo.

A monthly community health calendar with cancer related events in Essex
(CEED, ACS, St. Michael's Cathedral Regional Cancer Center) will be distributed to
coalition members, cancer-related program coordinators in the county, cancer liaison
physicians AND distributed through local health departments, posted at municipal &
other libraries, and schools. Once a website is constructed, they will also be posted
there for electronic distribution. All Coalition members are encouraged to share the
calendars.
The Coordinators requested that members forward any cancer-related events to them
by the 15th of prior month. More advanced notice is of course welcome.
Distribution of June Coalition Calendar
The Coalition calendar for the month of June was distributed; the coordinators will
distribute the monthly calendars through the list-serve,

Coordinators will be presenting Essex County breast and prostate cancer
statistics from the C/NA to the Community/Civic Sub-committee of the Newark Cancer
Initiative on June 15.

Developing a presentation on prostate cancer for the members of the county fire
department. Mike Festa will be helping to enlist the firefighters to participate.
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
With respect to Barbershop, Coalition members helped facilitate talks between
Virgil and officials at St. Barnabas, which has agreed to participate in the Barbershop
program. Earlier, members of the Coalition helped expand Barbershop to University
Hospital.
Advocacy - Joyce from New Community Centers
NCC is in the planning stages for a youth nutritional program; they currently offer
exercise classes at the recreational center where approximately 50-60 people attend;
full circle health care: community health programs/presentations and nutritionists
available.
Lois added that the Advocacy Committee has come to the consensus to let everyone
know of any emailing/calling campaigns to legislators through the Yahoo Groups listserve.
Development Committee - Catherine
Working on acquisition of a new mobile cancer screening van; the committee is looking
into multiple sources of funding for this endeavor; it will update the Coalition regularly on
the progression of obtaining a new van.
Stan explained the ENACCT proposal in a bit more detail. Members were asked again
to specify whether they would let us use their names for the grant application. A motion
was unanimously approved the Coalition support and be a part of this endeavor.
Education/Outreach Committee - Marielos
The committee is creating an inventory of the Coalition's outreach activities to identify
successful ”best practice” efforts, duplication of efforts, gaps in services, and potential
for maximization of activities. The committee will be developing an inventory form that
will be distributed electronically for all the members to complete. By assessing the
scope of outreach activities conducted by the Coalition's members, we hope to work
together and avoid duplication of efforts.
Patricia Pinto, an incoming 1st year medical student, is working on the Cancer Health
Education Project, under the direction of Stan and with the assistance of Marielos and
Jeanne. Stan explained that she is assessing the reading level and cultural sensitivity
of materials distributed by NJ health departments that are produced in both Spanish and
English versions. So far, she has received materials from 50 different sources; she has
created a database of materials by health department, so we may provide feedback to
each health department after the project's completion. Average reading level for
English materials is a little more than 8th grade, while reading level for Spanish
language materials is a little more than 7th grade.
Ana Natale-Pereira, MD, MPH, Assistant Professor of Medicine, Medical Director,
Focus Community Health Center, UMDNJ-NJMS
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“A Community Approach to Cancer Prevention: Making a Difference Through
Education”
Ana Natale-Pereira presented on colorectal cancer statistics, disparities in and barriers
to screening, and community-based interventions with an emphasis on the African
American and Hispanic communities in Newark.
Slides are available; please contact the Coalition coordinators if you would like a copy.
Question: Did you find any positive tests from the fecal occult blood test (FOBT) in the
study?
Answer: Yes, there were 6 positive results from the FOBTs. However, it was very
challenging to follow-up with these individuals.
Issac Hopkins mentioned that someone needs to stay with that person through the
entire process in the case of an abnormal finding. This challenge highlights the need for
a patient navigator program.
ANNOUNCEMENTS
 The Institute for the Elimination of Health Disparities (IEHD) is sponsoring a
community forum for the Barbershop Initiative on Monday, June 13, 2005. Local
barbers will be in attendance as well as representatives from UH. Everyone is
welcome to this event. Flyer was distributed.

ACS is holding their Relay for Life on July 8th and 9th. There is an event for cancer
survivors. The event is from 6pm on July 8th to 10am on July 9th.

Catherine: June 16th is the statewide Blue Ribbon Rally "No Man Left Behind" for
prostate cancer.

Stephanie (coordinator of The Essex Communities Against Tobacco Coalition)
announced that Dr. Michael Steinberg from the School of Public Health in New
Brunswick, Tobacco Dependence Program is available to conduct grand rounds on
nicotine replacement therapy for a small honorarium. Dr. Steinberg can be
contacted at michael.steinberg@umdnj.edu or at 732-235-8219.

Newark Now and Ironbound Community Center are sponsoring a health fair on June
24th. They will be distributing information from The Prostate Net and are willing to
distribute information from other groups as well. Currently, they have someone who
will be conducting mammograms onsite. However, they are still looking for someone
to conduct prostate cancer screenings at the health fair.

As there is a large Portuguese-speaking community in Newark, Newark Now is able
to translate materials into Portuguese.
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
Lois announced that there is a genetic testing study taking place at Mt. Sinai Medical
Center. It is seeking to enroll African American women. Informational flyers were
distributed. The study provides transportation to any participant requiring it.

Diana urged members to contact Governor Codey and tell him to support the bill
establishing a "New Jersey Health Access Study Commission." This legislation will
create a study of options for extending access to health care to all New Jerseyans.
The campaign alert will be sent to the members via the list-serve.
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