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NDCC Conference Call Meeting Minutes October NDCC

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									                                                   NDCC Conference Call
                                                      Meeting Minutes
                                                     October 17, 2011
   NDCC Mission: Working together to reduce the impact of cancer for all North Dakotans

   Agenda Items                                                                       Main Discussion Points
1. Roll Call and                           Dr. Leitch, NDCC Chair, welcomed all conference call participants. He encouraged NDCC members to
Welcome                                     email Candace Getz at cgetz@nd.gov to let her know you were on the call today, if you did not provide your
                                            name during roll call. A listing of attendees is included at the end of the meeting notes.
2. Additions to the                        Discussion regarding medication shortages
Agenda
3. Approval of                             Dr. Leitch asked for any additions or corrections to the August 15 meeting minutes, with no request for
Prior Meeting                               additions or deletions.
Minutes                                    A motion to approve the minutes was made by Marlys Knell; Barb Steiner seconded the motion and carried.
4. Treasurer’s                             Barb Groutt, NDCC Treasurer, reports a balance as of September 1, 2011 of $6,277.49. We have had
Report                                      income of $100.00 from CRAD for a donation to the coalition and expenses for food of $153.29 at the
                                            Jamestown Community College for the In-person Steering Committee Meeting. The current balance is
                                            $6,224.20. There is one outstanding bill from the annual meeting, that amount is not known at this time.
                                           Nancy Klatt called for the motion to accept the treasurer’s report; Julie Garden-Robinson seconded the
                                            motion and motion carried.
5. New Members                             The following people have submitted applications for NDCC membership; Bill Bauman, Missouri Valley
                                            Family YMCA – Bismarck, ND; Keila Eisenbeis, Medcenter One – Bismarck, ND; Serina Kinzler, FEK ADDO
                                            – Bismarck, ND; Megan Houn, Tobacco Free North Dakota – Bismarck, ND; JuLann Wiseman, Medcenter
                                            One – Bismarck, ND.
                                           Dubi Schwanz called for a motion to approve the new members; Marlene Larson seconded the motion and
                                            motion carried.
6. Partner Updates                         None available for the conference call today
7. NDCC                                    Dubi has listed all of the committee grantees on the website along with their goals for their projects and she
Community Grant                             will include them in the coalition newsletter which will be coming out in the next week or so.
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   Agenda Items                                                                                                      Main Discussion Points
Program                                There were 10 community grants awarded this program year of around $5,000 each (Custer Health, Grand
                                             Forks Public Health, LaMoure County Health Department, Mercy Hospital, Missouri Valley YMCA here in
                                             Bismarck, NDSU Extension, Rolette County Public Health Unit, Sanford Health Foundation North, Walsh
                                             County, and YMCA of Cass and Clay Counties in Fargo).
                                       There is an assortment of community grants this year that focus on different topic areas such as sun
                                             protection, colorectal cancer, survivorship, nutrition and physical activity. The community grants are based
                                             across the state.
8. Evaluation                          Currently working with the Barnes County ON THE MOVE partners in Valley City to conduct an evaluation on
Project Update                               their physical activity and nutrition program to prevent or reduce the affects of chronic disease. The
                                             comprehensive cancer program along with the Heart Disease and Stroke program and Healthy Communities
                                             program have funded this program for several years. Abstracts providing detailed information about the
                                             program are available on the NDCC website.
                                       The purpose of this evaluation project is to identify the strategies that make this multi-partner program so
                                             successful as well address challenges that can improve this already very successful program. We are
                                             planning a report and article which we will submit to a peer reviewed journal for publication with the intent of
                                             building evidence for this type of programming to prevent and reduce the effects of chronic disease.
                                       During the last week of September focus groups were conducted as part of the evaluation process. Surveys
                                             of the program partners and school staff along with records review are part of the evaluation process.
9. New Program                         Mark Winkelman is the new program evaluator for the cancer coalition and the comprehensive cancer control
Evaluator for                                program. He is a Bismarck native and a graduate of NDSU. He currently lives in Fargo and has lived in
Comprehensive                                North Dakota all of his life. He works with the Department of Public Instruction on the statewide YRBS
Cancer and the                               (Youth Risk Behavior Surveys) since 2001, the youth tobacco surveys since 2003, and doing numerous
Cancer Coalition                             tobacco related studies for both statewide and for individual district health units. He has done roughly 1,900
                                             research projects over the course of his career and many of them involved evaluations. He is looking forward
                                             to sharing his expertise with the coalition and helping continue the positive movement that the coalition has
                                             experienced. One of Mark’s first tasks will be assisting the treatment and survivorship workgroups with a
                                             survey that will be sent to all the cancer treatment centers in the state addressing access to care
                                             needs/resources during treatment and beyond with survivorship. The goal of this survey is to identify existing
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   Agenda Items                                                                        Main Discussion Points
                                            resources and gaps in resources for both the treatment phase and following treatment. This information will
                                            be used for the workgroups to identify priority work areas as well as compiling a list of available resources
                                            from the local to the national level.
10. 2011-2013                              Heart of America Medical Center in Rugby and Sanford Health in Fargo (Grantees for the state funded
Colorectal Cancer                           colorectal cancer screening initiative) are close to getting started with enrollment and screening of eligible
Screening Initiative                        North Dakotans who are 50 through 64 years of age.
– How to Refer                             Heart of America Medical Center will start enrollments on Monday, October 24. The phone number for heart
Prospective People                          of America Medical Center is 701-776-7000.
to the Two                                 Sanford Health will start enrollments after October 28. The phone number for Sanford Health 701-234-6292.
Screening Sites                            The screening goal for this biennium is 225 people between the two facilities.
                                           For any questions about the colorectal cancer screening initiative please contact Joyce Sayler at 701-328-
                                            2596 or by e-mail at jsayler@nd.gov.
11. Statewide                              CDC is contracting with Battelle to do a capacity assessment for endoscopic procedures (colonoscopies and
Colorectal Cancer                           sigmoidoscopies). This survey will be conducted at two levels; 14 states will be involved in a comprehensive
Screening Capacity                          statewide assessment, of which North Dakota is included and nationally, a randomized survey will go out to
Assessment                                  states not included in the statewide assessment.
Conducted by a                              The assessment will be begin this fall with the national survey and in January the 14 statewide surveys will
Contractor from                             begin.
CDC                                        Battelle will be using a purchasing list from distributors of endoscopic equipment as a means to identify the
                                            facilities who will receive the surveys. The facility survey addresses the number of scopes performed in a
                                            given time, number of physicians who are performing scopes and if there is potential to increase this number
                                            and
                                           Battelle will also be looking at census data from each state to see how many people there are in our state
                                            that are 50 and above that should be getting endoscopic screening as well as BRFSS data to see what
                                            percentage of this age group are receiving colorectal cancer screening. This information will help identify
                                            needs and gaps in services.
                                           CDC is asking Cancer Coalition members to speak with organizations who provide endoscopic
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    Agenda Items                                                                                                       Main Discussion Points
                                               screening encouraging them to participate in the survey. Also if your organization provides
                                               endoscopic screening, again encourage participation in survey.
                                         This information will be very beneficial as a tool for future planning not only for the cancer coalition but the
                                               providers as well.
                                         Statewide survey results will be shared with coalition members as well as organizations who participate in
                                               the survey.
12. Issues Affecting  The cartoon YouTube Video produced by Kizer Foundation was emailed to everyone along with a power
Cancer That Will be                            point called The Patient Protection and Affordable Care Act. This was sent out to provide information on the
Included During the                            affordable care act.
N.D. November                            Another document called Threshold Questions for State Insurance Exchanges was sent to coalition members
2011 Legislative                               outlining concerns from the American Cancer Society Cancer Action Network (ACS CAN) regarding the
Session in                                     Health Care Exchange Program and the Health Care Exchange governing board.
November                                 The special legislative session starts on November 7 and will last for one week. The Health Care Reform
                                               Committee in North Dakota has been holding a series of meetings across the state providing information
                                               about the health care exchange component of Health Care Reform.
                                         The legislators will be making a decision about having a state run health care exchange or allowing the
                                               federal government to do this for our state. Discussion will also include the make-up of the Health Care
                                               Exchange Board.
                                         Deb has been in communication with the interim committee comments as they have gone over the draft
                                               legislation and so far groups including AARP, ACS CAN, and North Dakota Medical Association have offered
                                               comments and/or testimony. There is concern regarding the composition of the health care exchange board.
                                               So far the health care reform committee has issued two different legislative drafts. Deb is expecting a third
                                               legislative draft, probably this week on the 19th because the next committee meeting will be held on October
                                               20. ACS CAN is concerned about the make-up of the governing board. What is not desired is for the
                                               insurance sector and providers to outnumber consumers on the board. It has been suggested to the interim
                                               committee that those with a financial interest in the exchange be barred from serving on the board, including
                                               insurers, providers and any first degree relatives. ACS CAN is advocating for consumer representation to be
                                               the strongest on the governing board for the exchange. If organization would like to meet with ACS CAN
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   Agenda Items                                                                        Main Discussion Points
                                            prior to the legislator session, a group will be getting together the last week of October. You can email Deb
                                            at deb.knuth@cancer.org and she can make sure you are invited.
                                           Deb Knuth is willing to send out bill draft to everyone. It is twenty-two pages long. It involves the
                                            governance, availability, affordability, and the administrative aspects of the exchange. There is a statement
                                            of principles that guides (ACS CAN) during this special legislation. ACS CAN is advocating for the
                                            healthcare exchange to be adequate, which means timely access and coverage to the complete continuum
12. Issues Affecting                        of quality evidence based health care services. Supportive services should be available as appropriate;
Cancer That Will be                         including access to clinical trials, chronic disease management and palliative care. ACS CAN asks that there
Included During the                         be coverage with sufficient annual and lifetime benefits to cover catastrophic expenditures, and by available
N.D. November                               they mean there be coverage available regardless of health status or claim history, that the policies are
2011 Legislative                            renewable, coverage’s are continuous and that people have a choice in plans. Affordable health care means
Session in                                  that the costs including premiums, deductibles, co-pays, and total out of pocket expenditure limits are not
November Cont.                              excessive and are based on the families or individual ability to pay. Premium pricing should not be based on
                                            health status or claim experience. Administratively, ACS CAN is advocating that the exchanges be easy to
                                            understand, with up front explanations of covered benefits, financial liability, billing procedures, and
                                            processes for filing claims, grievances. Appeals should be easily understood and timely and required forms
                                            are readily comprehensible by consumers, providers, and regulators. Consumers can reasonably compare
                                            and contrast the different health insurance plans available and can navigate health insurance transactions
                                            and transitions
                                           Dr. Leitch asked if Deb knew the views of some of the consumer organizations, such as AARP, about the
                                            composition of the board, do they share your views. Deb reported “they do, in fact AARP wants to meet with
                                            them as well as the North Dakota Medical Association”. Deb Knuth also states “we are all concerned that the
                                            majority of the board members are consumers and not brokers or insurance industry members”. In fact the
                                            Health and Human Services (HHS) has rules to ensure that consumers constitute the majority seats on the
                                            board. They do allow the states to have some say in how the health care exchange is composed. The
                                            meeting the last week of October will unify the messages for legislators . Dr. Leitch indicated that you will
                                            have to have the experts such as risk adjustors, present for testimony during the special session as they
                                            know healthcare costs.
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    Agenda Items                                                                                                       Main Discussion Points
                                         It was asked who would be potentially purchasing health exchanges. Deb Knuth reports” people who will be
                                               looking at the health care exchanges include uninsured people with low incomes which are above eligibility
                                               income for Medicaid. Those with low and middle income can receive a tax credit to help pay for the health
                                               insurance premium costs. If you already carry insurance, the health care exchanges are not a place that you
                                               would be looking for additional coverage.
                                         Questions can be directed to Deb Knuth at deb.knuth@cancer.org.
12. Issues Affecting  Jessica Gilbertson from American Cancer Society ACS CAN asked coalition members to consider
Cancer That Will be                            membership in ACS CAN. ACS CAN members can provide a united voice to decision makers on cancer
Included During the                            related issues. Membership also provides a means to receive up-to-date information on legislative issues
N.D. November                                  relating to cancer at the federal and state level. ACS CAN members may also be able to participate in Lobby
2011 Legislative                               Day in Washington DC, meeting with state legislators. ACS CAN provides a means to keep cancer in the
Session in                                     forefront of decision makers.
November Cont.                           ACS CAN can provide information/data on specific policy/practices issues under debate or in process of
                                               review to aid in making connections with legislators and other decision makers more effective.
                                         ACS CAN members will making connections with legislators during the special session about the health care
                                               exchange.
                                         Anyone can become a member of ACS CAN. The benefit of membership is having access to current
                                               information about cancer related issues that are currently under review or debate from the national to the
                                               state and local level.
                                         Jessica will send out registration information and a link for their website in case anyone is interested in
                                               joining ACS CAN. It is a $10.00 membership fee and that is good for the whole year and you will get all the
                                               legislative updates as well as reports on all activities related to cancer issues. For example ACS CAN
                                               members worked on Smoke Free Bismarck. During this campaign, all activity updates went out through their
                                               ACS CAN list serve. A good way to get policy/advocacy updates is to join ACS CAN. Jessica Gilbertson will
                                               send out ACS CAN membership information.
13. Other-                               Dr. Leitch talked about the medication shortage. Most of the meds on the shortage list are intravenous and
    Medication                                 18% of the medications that are reported as short are chemotherapy drugs with colon cancer medication as
    Shortage                                   some of the main medications on this list. This medication shortage has been a concern for at least the last
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   Agenda Items                                                                       Main Discussion Points
                                            year and actually there have been drug shortages for oncology drugs dating back to last several years. On
                                            occasion and this would maybe happen about once a year. However, it has become more and more of a
                                            problem. There were 178 drug shortages in 2010 and that compares to about 55 drug shortages 5 years
13. Other                                   ago. This year there will likely be over 300 drug shortages. About 1 in every 5 drugs short is anticipated to
    Medication                              be an oncology drug. There are a number of sites where you can get information on this, if you want to get
    Shortage Cont.                          information, the Association of Community Cancer Centers, the American Society of Clinical Oncology are
                                            good sites to check on.
                                           One of the major difficulties is planning for the drug shortages.
                                           According to information that Dr. Leitch has received, reasons for drug shortages can include;
                                                o consolidation of generic drug manufactures so you would have maybe 2 or 3 of them manufacturing
                                                   the drug and then all of a sudden just one manufacturer and if something happens to that
                                                   manufacturing (process) at their plant, then suddenly you have an immediate drug shortage.
                                                o Some brand name drugs have had the patent on them expire and that company or no other
                                                   manufacturer picks it up as a generic.
                                                o There are increased quality standards so the FDA might go in and shut down a plant. If there is no
                                                   other company making the same medication you now have a shortage.
                                           There is no repository to report medication shortages so you have no advance notice
                                           There have been meetings in Washington to try to address these issues. A legislator from Minnesota has
                                            sponsored a bill in the senate requiring a system be in place to report shortages prior to unavailability of a
                                            medication. Providers could be informed in advance thus making plans for alternative treatment. Right now
                                            providers don’t have that kind of advanced notice and the ability to plan ahead. Dr. Leitch reports “Just an
                                            example of what can happen, we have had patients who are on a drug like Doxil, which is now unavailable,
                                            and we have had to find other places where the patient can go for the medication or look for an alternative
                                            medication. If we had advance notice, we could have plan how to address the shortage. Many health
                                            systems and oncology clinics have developed operational assessments where the pharmacy validates
                                            details of the shortage once it is heard, determines the stock on hand and looks for alternative sources.
                                            There also needs to be a therapeutic assessment as to how many patients will be affected and what are the
                                            alternatives. This is where the doctors need to get involved”.
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    Agenda Items                                                            Main Discussion Points
                                There are other non-oncology drugs that we use commonly in the hospital such as IV Lasix, IV anti-nausea
                                 meds like Compazine, basic electrolyte replacements like phosphorous or magnesium taht are in short
                                 supply. Dr. Leitch state “This is a serious issue and we need to do everything we can to address this
                                 problem. Very likely the federal government will need to pass legislation requiring companies to report
                                 anticipated shortages as well as develop a central repository for shortage information”. Dr. Leitch continues
13. Other –                      to state “patients have been referred to us from other parts of the state because we may have the
    Medication                   medications in stock that are in short supply and likewise we may need to refer patients elsewhere because
    Shortage Cont.               we do not have a medication that is in short supply or not available. This is what happens when a shortage
                                 impacts patients”.
                                More information on the drug shortage is included in upcoming cancer coalition newsletter. The article
                                 includes the FDA and Colon Cancer Alliance view point of the drug shortages as they are supporting
                                 legislation on this issue. The Colon Cancer Alliance has information on how to draft a letter to your
                                 legislators if you are interested in doing so. The Colon Cancer Alliance website is www.ccalliance.org.
                                The FDA and Colon Cancer Alliance websites shows 211 drug shortages for 2010 and there are already 211
                                 drug shortages as of the end of September 2011, 18% of these are oncology drugs (22 chemotherapy drugs
                                 and 5 of them are actual treatment for colon cancer which is why the Colon Cancer Alliance is taking this
                                 issue on).
14. Discussion on               Would like to encourage members to consider joining a workgroup if you haven’t had an opportunity to do so.
Additions to the                 You can contact Joyce or Dubi to learn more about the work groups.
Agenda
15. 2012 Coalition                           Refer to attachment. Please put these dates on your 2012 calendars including the annual in-person
Meeting Schedule                              meeting on May 16.
                                        The 2012 October conference call date was incorrect on the schedule sent out with the agenda. The
                                              correct date is Monday October 15th. We will send out the correct 2012 meeting schedule with the meeting
                                              notes.
16. Complete NDCC  Complete In-kind Form http://www.ndcancercoalition.org for any time and resources you have contributed
Member In-kind                                (time spent participating in conference calls, meetings, time devoted to cancer plan objectives/strategy
Form on the NDCC                              projects, mileage, supplies and media for any NDCC related activities from July 1, 2011 through the
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  Agenda Items                                                                           Main Discussion Points
Website Home Page                           conference call today – October 17, 2011 that you have not reported.
                                           Send the completed form to Candace Getz at cgetz@nd.gov.
17. Adjournment                            If you did not participate in roll call before we began the meeting today, please send an email to Candace
                                            Getz at cgetz@nd.gov stating you attended the call today.
                                           Next NDCC Conference Call – December 19, 2011 noon central time.

                                                                       Contact information for
                                                    Comprehensive Cancer Prevention and Control State Staff
                                            Joyce Sayler, Program Director         jsayler@nd.gov  701-328-2596
                                            Dubi Schwanz, Outreach Coordinator     dschwanz@nd.gov 701-328-3046
                                            Candace Getz, Administrative Assistant cgetz@nd.gov    701-328-2306

   NDCC Members in attendance or on conference call:

   Laurie Alberts                                   Candace Getz                                    Kristi Lee-Weyrauch                               Jackie Roberts         Karen Workman
   Deanna Askew                                     Teresa Garrahy                                  John Leitch                                       Charlene Reiswig
   Bill Bauman                                      Jessica Gilbertson                              Joell Letzring                                    Mary Sahl
   Katherine Black                                  Barbara Groutt                                  Jackie Keterling                                  Joyce Sayler
   Jennifer Boeckel                                 Angela Haakenson                                Alice Musumba                                     Dubi Schwanz
   Kara Dodd                                        Mary Hanretty                                   Kyle Muus                                         Barbara Sherburne
   Tinka Duran                                      Nancy Klatt                                     Laurie Odden                                      Desire’e Steinberger
   Jodie Fetsch                                     Marlys Knell                                    Donna O’Shaughnessy                               Barbara Steiner
   Julie Garden-Robinson                            Deb Knuth                                       Kevin Pavlish                                     Delorse Tschider
   Sheila Geffre                                    Marlene Larson                                  Liz Rindel                                        Mark Winkelman




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