Lucinda Hogarty, The Connecticut Cancer Plan
December 20, 2009
Welcome to Yale Cancer Center Answers with Drs. Ed Chu and Francine Foss, I am Bruce Barber. Dr. Chu is Deputy Director and Chief of Medical Oncology at Yale Cancer Center and Dr. Foss is a Professor of Medical Oncology and Dermatology specializing in the treatment of lymphomas. If you would like to join the conversation, you can contact the doctors directly. The address is canceranswers@yale.edu and the phone number is 1888-234-4YCC. This evening Francine welcomes Lucinda Hogarty. Lucinda is the Executive Director of the Connecticut Cancer Partnership whose mission is to reduce the suffering and death due to cancer and improve the quality of life of cancer survivors throughout Connecticut.
Foss
Who belongs to the Partnership?
Hogarty
We have about 150 organizations represented. They are
represented by over 300 individual members who participate in
committee work to develop and to implement cancer-fighting
strategies within the context of their own organizations.
Foss
How was this whole Partnership founded?
Hogarty
It was founded by five original members. They were Yale
Cancer Center, the UConn Health Center, the American Cancer
Society's New England Division, the Connecticut State Medical
Society, and the Connecticut Department of Public Health.
Funding came originally from the Centers for Disease Control with
some planning and then some implementation funds for the original
organization for putting a comprehensive cancer control plan into
place in the state of Connecticut. Since those original
funding opportunities became available in 2002, we received some
funding from the state of Connecticut.
Foss
How long has this Partnership been in operation?
Hogarty
It has been in operation since 2002, but it was only in 2008 that
we received funding for staffing. As I said, we have been
dependent on voluntary efforts and of course we continue to be, but
we do have an infrastructure now that has helped with the
development of the second State Cancer Plan. The voluntary
organization created an earlier version of the Connecticut Cancer
Plan, which covered the years 2005 to 2008, and we have just
launched a new plan covering the years 2009 to 2013.
Foss
You talk about the Connecticut Cancer Plan, can you tell us a
little bit about that?
Hogarty
Yes, the Connecticut Cancer Plan is designed to address priorities
in reducing the burden of cancer in Connecticut. Its main
goals for the Partnership, the members who were involved in
creating this plan, are to reflect national goals such as Healthy
People 2010, the American Cancer Society's 2015 goals, and the
National Cancer Institute and the Institute of
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Medicines' blueprints regarding fight the fight against
cancer. It has an overreaching theme of addressing access and
disparities issues. It also tries to incorporate the vision
and the goals of its member organizations who work in the cancer
fight everyday; we try to set priorities on an annual basis.
Some other things that we are trying to address in the very
preliminary period covered by this plan is to deal with prevention
through the promotion of healthy lifestyles; including healthy
eating and active living, which of course can prevent cancer as
well as a number of other chronic diseases. We have divided
our continuum of cancer control into prevention, which I just
mentioned, the second committee area which is early detection, and
we are looking to increase cancer screening particularly among
underserved minority groups. In the area of cancer treatment,
which is the third of our committees, one of our priorities this
year is to support the creation of a state-wide clinical trials
network to increase participation in clinical trials, and that's
based here at Yale. The fourth committee covers the issue of
survivorship and what we are hoping to do in that area is to
increase the number of survivors, cancer survivors, who are able to
use support services critical to their ongoing health as well as
make sure that professionals involved in their ongoing care know
about survivorship guidelines.
Foss
We have talked with a number of other guests on this show about the
whole issue of early detection and cancer treatment, but we haven't
really focused on prevention alone. Is this a major area that
you are looking at right now?
Hogarty
Yes, it is, and it's a very important one. I think that one
of the two advantages of the approach that the Connecticut Cancer
Plan takes, and members within the Partnership, is to take a public
health approach that it's better to prevent a disease than to treat
it. We do have the opportunity to work in accord with other
organizations that are also promoting healthy eating, active
living, and smoking cessation to prevent disease before it
occurs.
Foss
Does the Partnership itself actually reach out to people or do you
do it through your affiliate organizations?
Hogarty
We primarily do it through our affiliate organizations. For
example, in the prevention area, some of the partners that would be
involved in prevention activities might be local health departments
in towns and in regional districts. What we have been able to
do is offer them information, networking opportunities, to learn
about best practices, lessons learned to establish programs that
affect their citizens in their own locations. We feel
strongly that it's the organizations themselves that know their
communities, know the best ways to reach them, and know their
patients.
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Foss
In addition to working with the individual organizations, do you
have a state-wide plan say for prevention that's implemented in a
number of different settings?
Hogarty
Yes, but the way that primarily takes place is through one of our
other committees, which I haven't mentioned yet, which is our
advocacy committee. We have four cross cutting committees in
addition to the continuum ones that I mentioned. Advocacy is
one, communications and education, which of course is very cross
cutting, is another. We also have a committee that looks at
data to make sure we can benchmark and track our progress.
And then as I mentioned earlier, an over arching theme is issues
relating to access, barriers to care, and to disparities. So,
across the continuum committees, each one of those cross cutting
committees is able to support the activity. So for example,
in prevention, we may have a strong advocacy agenda to bring about
policy changes, or in fact laws, which would support healthy
lifestyles in communities.
Foss
We have heard the word disparities on other shows as well, can you
tell our audience a little bit about the disparities issue, and how
much of a problem it is in Connecticut, and what the national
agenda is to address disparities?
Hogarty
That is one of the primary goals of the American Cancer Society as
we look forward over the next five years. It is unacceptable that
there are disparities in cancer burdens by population group, and
the population group may be age, it may be race, it may be language
spoken, or it may be geography. There are many ways to look
at disparate groups, but what we are hoping to do is identify what
those barriers are that may lead to different types of treatment,
different access to treatment. For example, in the area of clinical
trials it is very important to make sure that all elements of the
population have access to clinical trials and that the findings of
those clinical trials can reflect different populations needs.
Foss
And one way to do that obviously is to make sure that the consent
forms for those trials are translated into different languages and
also that that information out in the public describing those
trials is available in different languages.
Hogarty
Yes, and even for English speakers, to make sure it is available in
a way that people who may have low literacy understand. One
of the things that the Cancer Partnership has been working on, has
done in the past, and will continue to work on, is sharing
resources, because we do find that there might be one area of the
state or one small organization that has very effectively reached
out to groups that may have been hard to reach in the past. And for
us to be able to share their approach is very beneficial and helps
save resources.
Foss
What is the mechanism by which you interact with all these
different communities? Do you
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have regular meetings of the organization, and how do you actually
interface around the state?
Hogarty
What we do is we have an annual meeting and it is an opportunity
for people to really figure out how they want to be involved,
that's not the only opportunity, but it is one. At that
point, people usually are able to say, well I think the area I am
most interested in, for example, is end of life care, palliation
and hospice, which is one of our other committees, or they may say
my skills are in communications or in data surveillance. Then
they become a member of that committee. Those committee chair
people hold meetings on a regular basis and we are trying, I think
this is something we haven't done as well and going forward I would
like to do, is move those meetings around to different parts of the
state and ask some of our member organizations to host
opportunities for us to have regional meetings.
Foss
How are these regional meetings funded?
Hogarty
Well, fortunately for us we have a lot of support from our member
organizations, that's primarily in kind, though there are
occasionally small grants that support some of the activities that
we are doing, but because we are a membership organization and our
goals and objectives align very closely with the goals and
objectives of community hospitals, and local health districts, for
us to go in and have an agenda that meets the needs of the local
community, they are able to provide support or a location.
Foss
For people out there who say aren't members of a Community Hospital
Board or another one of the organizations and want to get involved
in this, how can they do that?
Hogarty
The best way is to go to our website, which is
ctcancerpartnership.org, but what would be helpful is for them to
take a look at the new cancer plan, which is available on our
website and figure out how they could fit in. I think that's
what is very important. We want this new plan to be a
document that is a call to action, not just a report. We
would like them to say this is a goal, this is a strategy in a
particular area, for example survivorship, where I see a need to
get involved and what they would do is get in touch with us and say
I would like to be involved in one of these activities.
Foss
Great, Lucinda I would like to talk a little bit more about this
and compare it to what's available in other states when we come
back after the break. We are going to take a short break now
for a medical minute.
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Foss
Welcome back to Yale Cancer Center Answers. This is Dr.
Francine Foss and I am here with Lucinda Hogarty who is joining me
today to discuss the Connecticut Cancer Plan. Lucinda, we
talked a little bit about some of the details of the Connecticut
Cancer Plan in the prior segment and I am wondering, do other
states have a similar plan or is Connecticut unusual in this
regard?
Hogarty
All other states do have a plan similar to this. In the late
1990s, the Centers for Disease Control required that each of the
states develop a comprehensive cancer control plan. So,
around the country there are plans that are in various stages of
development. Some, like Connecticut, are into their second 5 year
plan, or second 3rd, 4th, or 5th year plan, and others are just
beginning to implement plans, but this is something that you see
around the country going across all elements of organizations that
fight cancer.
Foss
We talked about this being a comprehensive plan and we have a
comprehensive cancer center here in Connecticut. Can you talk
about the word comprehensive?
Hogarty
Yes, what comprehensive cancer control is, is a concept that
depends on an integrated and coordinated approach to reducing
cancer. It does look at the continuum of cancer control, so we
would prefer to prevent cancer rather than deal with it after it
occurs; therefore, we start with prevention. We deal with
early detection, which usually involves cancer screening and
treatment, and that's a very large subject so in our cancer plan we
usually focus on one or two priorities at a time in the cancer
treatment area, survivorship, and palliation, dealing with pain and
end of life issues.
Foss
In the first five years, what did you accomplish and what are your
plans for the next five years?
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Hogarty
We have a lot of accomplishments as you can imagine. With the
first cancer plan there were many strategies and objectives and we
have spent the past year or so putting together a document that
describes our accomplishments, and the progress we have made
towards our earlier goals in a progress report, which is also on
our website. But just to name a few, we were actively in support of
smoking cessation programs around the state and that included
additional funding for them. There was a great deal of
involvement of our prevention committee in the school wellness
programs looking at healthy eating and active living, in
particular, cancer screening for the uninsured, education of
professionals in palliative and hospice care as well as
survivorship issues, and improved insurance coverage for hospice
services, just to name a few.
Foss
What about the clinical trials issue? This is something that
a lot of patients obviously are concerned about and we talked a
little about the disparities issue. You have been working now
to try to set up a state-wide clinical trials network; can you give
us some details on how that's going?
Hogarty
I think it's going very well. The clinical trials network,
which is being established here at Yale, is looking to coordinate
the clinical trials that are going on around the state of
Connecticut. There are a few issues to increase participation
in the clinical trials. One would be making sure that the
medical professionals know that it's something that they can, and
should in many cases, offer to their patients. And another is
making sure that the patients understand what's involved, and as we
mentioned earlier, that may be ensuring that the information about
the clinical trials is accessible to these patients. So, we
are looking at consolidating a lot of the activities that otherwise
could feel fairly scattered around the state into a centralized
clearinghouse type of approach for the information to go out to
patients.
Foss
Will that be available say online for patients?
Hogarty
Yes it will. There is going to be a website that will be
launched I think within the next month or so based out of Yale
Cancer Center, but there will be a link to it on the
ctcancerpartnership.org website as well.
Foss
Will there be an opportunity for patients to get new kinds of
treatments in the community setting or will this still be based on
referring patients to the academic centers?
Hogarty
I believe that it's going to be available in both situations.
Foss
So that would require developing an infrastructure among all the
different medical practices within the state to try to get those
treatments out to the community?
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Hogarty There is
going to be a lot of that and I think as we move forward with the
Cancer Plan for 2009 and 2013, we really do hope to build on some
of the accomplishments. The first year of the clinical trials
network has just wrapped up, and we are hoping that the work that
has been accomplished under that first year will be built upon and
the cancer plan, the Cancer Partnership, will be able to take that
next step out to the communities to develop that
infrastructure.
Foss
What about the whole survivorship issue? This is a new area
that we are now focusing on in cancer and we have talked to some
survivors on prior shows about these issues. There are a
number of medical issues as well as psychosocial issues that
patients face. How are you going to bring that together
around the state?
Hogarty
An interesting accomplishment under our prior plan was to conduct a
state-wide survey both of survivors, and of medical providers, to
determine what survivors needs are. That's going to provide us with
information going forward to see what programs, or what materials,
need to be developed going forward, and I think one of the things
that is being developed, for example at Yale, is a survivorship
program that looks at the person as a whole person and takes all
that complicated information from their cancer treatment period in
their lives to see what their risk factors going forward are, and
whether there are additional cancer risks or whether there are
other kinds of health risks as they get older.
Foss
I know from talking to some of my own patients that are survivors
that one problem is trying to address that care with their primary
care doctor and other physicians that are non-cancer physicians
taking care of them. I am wondering how the survivorship effort
will extend beyond the cancer providers?
Hogarty
One of the goals that the survivorship committee is looking to
develop is survivorship guidelines that would basically be
documentation that the survivor can carry with them to other
medical settings. So, when they are not seeing an oncologist
anymore, they can go to their own primary care provider and say
this is my cancer history, this is what you need to work with going
forward to ensure that I get the best care, and the best screening.
But I think it's also a matter of educating the patient.
Unfortunately, some statistics have shown that cancer survivor's
don't embrace healthy lifestyle habits as well as we would
hope. So, part of this is educating the survivor and
educating the provider as well.
Foss
On the flip side of it is the palliative care issue, and you
mentioned that that's one of your major initiatives, to try to
educate the community and health care providers about addressing
palliative care and hospice care and also improving access to that
around the state?
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Hogarty
Yes, and this is building on some very successful work that's been
done over the past few years under our hospice palliative care
committee. One of the things that they have done is some
education programs for a number of different types of
professionals. They are also trying to extend the number of
facilities, or the number of settings, that offer hospice
care. They are trying to extend hospice care, or awareness
that hospice care might be needed, in pediatric settings, veteran
settings, prison settings, as well as community
settings.
Foss
What about the issue of advocacy? This is something that you
have talked about, you have alluded to, a number of times in the
discussion, and it seems like that's really a major part of this
whole effort?
Hogarty
It is, it's a way that we bring together issues across the
continuum of care because we find that education and advocacy in
fact do that. What we find is if there is an issue, for example
with regards to barriers to care, that's going to be a barrier for
preventive services, early detection services, prevention, etc.,
going across the continuum. So, if a problem can be addressed
by an improvement in policy or a change in law, that's something
that the Connecticut Cancer Partnership with its 150 organizational
members can voice a very strong advocacy position for.
Foss
Do you have patients who are also members at this point?
Hogarty
Usually they are survivors, yes, and we have survivors who are
either representing themselves as patients, or survivors, or
representing survivor groups. Usually our individual members
do see themselves bringing the approach through the Connecticut
Cancer Partnership back to some organization where they can
leverage that kind of information in a wider venue. For
example, we may have breast cancer support group representatives
who will go back and bring information to their members.
Foss
What about reaching out to the other two areas that are involved in
health care, namely government, the people that are making our
laws, and also the insurance industry in Connecticut? Are you
interfacing with them, are they part of this whole Partnership?
Hogarty
Yes, we do have representatives from the insurance industry, in
particular, here in Connecticut who are members of the Partnership
and we're very involved with our governmental
representatives. Through our advocacy committee we develop a
legislative agenda, and one of our roles is to provide information
to our law makers about advocacy issues that are important in
fighting cancer.
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Foss
Do you at this point have funding to fund individual groups around
the states who may have an initiative related to cancer?
Hogarty
Right now, because of the state funding crisis, budget crisis, we
do not have funding going forward. We are hoping that that
will be resolved, and there are opportunities for us to either
receive some funding through state legislative allocations or
through a state law that some court settlements, negotiated by the
Attorney General, do provide funding to the State Department of
Public Health for the purpose of comprehensive cancer
control. In that case, there may be opportunities going
forward, but we are facing the same challenges that all grant
funded and government funded agencies are facing with this budget
crisis.
Foss
I believe last year there were some opportunities for funding
through that mechanism, through the Attorney General's fund, to get
some of these say breast cancer groups together and some other
advocacy groups together as part of this Partnership.
Hogarty
Yes, there was a settlement made between the Attorney General and a
pharmaceutical company that did allocate some funds for this
purpose. Because of the hold up with the state budget, we
haven't seen that money flow down to the level where we would like
to see it.
Foss
That's unfortunate.
Hogarty
Yes it is, and that's one of the things where we feel that the more
support we get from our members to let their legislators know that
that money needs to be released to the purposes that it was
intended for, the greater voice we can have.
Foss
So that's certainly one way people out there can help?
Hogarty
Absolutely yes, and that's something where we will share
information with people from around the state, because I think it's
very important for people to contact their own legislators, their
own state representatives, and say in our own corner of the state
this would have an effect on people like me who are fighting
cancer, who want this for our own local community.
Foss
What are your goals for the Partnership moving forward?
Hogarty
We have a very ambitious agenda. This 5 year cancer plan is
filled with specific strategies, many of which don't require
funding fortunately, some of which do, but I think immediately what
we would like to do is bring together people and organizations who
will benefit from the synergy of sharing their approaches with each
other and really bringing forward and
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bringing to fruition some of the strategies that will decrease the
burden of cancer in Connecticut.
Foss
Are you looking throughout the state now, are you looking at an
increased incidence of cancer or has it leveled off?
Hogarty
Our data always lags, and this is one of the problems that we
have. We are looking at breaking things down to an issue were
we can really measure. In many cases things have leveled off,
but one of the problems that we have not seen progress with is
these disparities and access groups. We can't feel that our job is
done when cancer numbers begin to stabilize. What we really
need to do is dig deeper and say, that's great for overall, but we
as an organization want to be able to focus on areas where much
progress is still needed.
Foss
Certainly in the area of early detection when you have
interventions for early detection it takes years before you start
seeing the benefits.
Hogarty
Exactly, and again that's true with prevention as well.
Foss
If people are interested in participating in the Partnership, how
can they learn more? Could you just tell us little bit about
the website?
Hogarty
The website does have a number of links to documents that are
important; our progress reports, which talk about the progress
that's been made under the previous cancer plan as well as the new
cancer plan, 2009 to 2013, and again that's at
ctcancerpartnership.org.
Foss
Something for everybody out there to remember. Many of us
have been touched in our lives by cancer in one way or another.
Hogarty
Yes, that's true and we feel that there is a place for many people
who have some interest at whatever level in cancer. There is a
place for them to be active in the Connecticut Cancer
Partnership.
Foss
Lucinda, I would like to thank you very much for joining me
tonight on Yale Cancer Center Answers. We are grateful for
the work of the Connecticut Cancer Partnership and we look forward
to hearing more about the progress of the State Cancer Plan.
Until next week, this is Dr. Francine Foss from Yale Cancer Center
wishing you a safe and healthy week.
If you have any questions or would like to share your comments, you can go to yalecancercenter.org where you can also subscribe to our podcast and find written transcripts of past programs. I am Bruce Barber and you are listening to the WNPR Health Forum from Connecticut Public Radio.