Meeting 1 Notes
May 19, 2006
Welcome to the first meeting of the Governor's Child Health Advisory Committee.
Members present: Dennis Cooley (Chair), Mary Baskett, Shannon Cotsoradis (for Gary Brunk), Leadell Ediger (phone), Betsy Hineman, Vicki Hoffman, Gerard Lozada , Carol Massieon (phone), Rand O'Donnell, Tom Ostrander, Nick Rogers, Penney Schwab, Mary Ann Shorman, Doug Vance, Mim Wilkey
Staff and speakers present: Howard Rodenberg, Linda Kenney, Ghazala Perveen, Sharon Wenger, Connie Satzler
*** The following text represents notes taken at the meeting, but it is not a transcript of all comments made. Although an attempt was made to accurately portray the key themes discussed, some comments may have been incorrectly summarized or inadvertently attributed to the wrong member. Due to time limitations during note-taking, not all comments were attributed to a committee member and several comments were missed entirely. Please submit additions and corrections to Connie Satzler at csatzler@kansas.net. ***
**Reviewed Roles & Responsibilities presentation**
*Q: What do you see as the Committee's roles and responsibilities?*
Gerard Lozada: Didn't this committee grow out of the Healthy Kansans/Healthy People project?
Gerard Lozada: See prevention, access to health care as key issues
Dennis Cooley: Yes, also see prevention and long-term planning
Nick Rogers: Seems like a shotgun approach in the state. Need a focus. Would like to see prevention as focus, though certainly access to care needs to be addressed.
Need to clean things up, streamline organizations
Howard Rodenberg: If this group would choose to review what other groups are doing, to offer advice on streamlining and coordinating efforts in the state, this would be good.
Lifestyle changes and fitness
Coordinating efforts, long-term approach to child health in the state
Continuous delivery of care, e.g., Infant Toddler and Parents as Teachers, but what to do after age 3?
Shannon Cotsoradis: It’s also important to look at opportunities to strengthen data collection so decision makers have the information they need to make stronger recommendations.
Tom Ostrander: We don't want to reinvent the wheel.
*Q: What are your expectations of KDHE’s roles and responsibilities?*
Gerard Lozada: What are the priorities the department can handle? For example, is it better to start with a new program or work with what we have?
Rand O’Donnell: I also hope we develop the credibility to be included at the table (with KDHE).
Carol Massieon: I have not heard all the discussion. However, since I represent the Kansas Association of School Boards, what are the responsibilities of the schools? Unfortunately, it seems that schools are raising our children and working with the families more than other organizations.
What is doable? We need to understand limitations, not only from KDHE, but also from other departments.
*Q: What information or support do you need to meet your obligations as Committee members?*
What do we need? We need the data; we need the facts to be able to make informed decisions.
Need those facts from a broad perspective. We each represent a specific area. We tend to see from our own point of view. We need a broader view.
To help gain a broader perspective, we can use national data, also models from other states.
Dennis Cooley: Massachusetts has started universal health coverage program. …related to not reinventing the wheel.
Rand O’Donnell: …And maybe we can invent some, too!
Carol Massieon: Ditto that. Data have received so far has been great. I am primarily familiar with schools. Tremendous information out there from national school board association.
Related to Carol’s comment, some of the information may come from us that we give to staff to disseminate out to committee members.
*** Focus Area Consultant Presentations ***
* Immunization Presentation by Sharon Wenger *
Reviewed handouts posted online and provided an additional handout (we'll try to get a copy and post online.)
Handout – National Immunization Survey (NIS) data. Description of the NIS is in the Retro Survey document (posted online).
Sharon reviewed immunization data, creation of Blue Ribbon Immunization Task Force. Task force included providers, local health department representatives, and others. We worked with KHI, who provided facilitation and research expertise. The Task Force ended up with several recommendations. We didn't receive funding for this project.
As an example of one of the recommendations…WIC Linkage project has been one of the most successful. One-on-one approach with the WIC staff and clients. As we've had funds, we've expanded WIC Linkage project.
Sharon reviewed numbers on the NIS and retro survey.
There is another group working on the immunization issue, the Immunize Kansas Kids project. The statewide immunization program is here at KDHE. But, in addition to that, Kansas Health Foundation funding is going to KHI to go towards research, to do in depth work to find out what is going on in Kansas.
Dennis Cooley: 4-3-1 rates were low because of WHEN last dose was given. More of a timing issue. …this is a very big issue. We do need to get our kids immunized.
Howard Rodenberg: Lot of focus on childhood immunization, but not a focus on the larger landscape of immunization. I'm hoping this group can address the bigger issue (appropriate immunizations across lifespan) (e.g., HPV immunization).
Carol Massieon: What about religious or medical exemptions??
Sharon Wenger: Don't remember how many, percentage is very low. Kansas does have religious or medical exemptions. Kansas does not allow philosophical exemptions, like some states do. Field staff randomly select school districts, makes sure this is being carried out in the way it's supposed to.
Dennis Cooley: Data shows Kansans tend to immunize kids. Not a lot of philosophical resistance to immunizations here.
Carol Massieon: Can immunization records be required from home school or private school?
Sharon Wenger: I don't think we get the reports on this. I will double-check to make sure.
Other comments or questions on immunization??
Tom Ostrander: Higher rates in some states (on 4-3-1). Do we know why these states are higher?
Dennis Cooley: Some states had universal purchasing programs, which really isn't the case now... some have state funds for purchasing...don't think there's one reason
Howard Rodenberg: Some is access to care. Some is geography. Some is universal purchase. Multiple factors involved. While we have the Immunize Kansas Kids group looking at factors at the two-year-old level, these same factors may play into other immunizations – for example, adolescent age. This group has an opportunity especially to take a look at other population groups (i.e., other ages) and see if the same strategies should be applied, or if there are different strategies for these other age groups.
Dennis Cooley: Vaccine for children program…
Rand O’Donnell: I think better a better indicator of health in the state is percentage of children who have a medical home and use it. We should keep this on our docket for consideration. ...EPSDT programs. ..other programs.
Mary Ann Shorman: I work in a middle school. Dr. Rodenberg is correct about the adolescent age and immunizations. Drives home the importance of immunizations for other ages.
Howard Rodenberg: May be different strategies for getting those immunizations into adolescent population than the 2-yr-old population. This group – more than another – might seize this opportunity to work strategies for the adolescent population.
Dennis Cooley: Adolescents that come in – at least in my practice – are those that go for sports and need physicals. Recommendation is dropping age to 12. If they are not in sports, you’re lucky if you get them to come in.
Penney Schwab: School partnership is key related to immunizations. Clinic can do an onsite visit to the school when enough immunization forms are turned into the school nurse – example of something that works in our community.
Mary Ann Shorman: We've done that that in the past, too, and it has worked well, but were told we couldn't this year. Something due to (???)
Gerard Lozada: Where is this immunization information kept? With the school or health department…?
Dennis Cooley: With the immunization registry coming on, info could be available there.
Sharon Wenger: Whoever the provider is would have the child’s immunization record.
KS has not had a statewide computer immunization record, but we're doing that now. Private providers can get on the system now. It also has reminder/recall capability. Research from other states has shown this is one thing that helps to increase immunization rates.
* Newborn Screening Presentation by Linda Kenney *
See newborn screening handout.
Linda reviewed information on handout.
Big three for newborn screening contractors: Pediatrix, Baylor, Mayo
Now, have a state law that requires that it goes to Kansas state lab.
We're one of about a handful of states not using new technology, Tandem Mass Spectrometry.
There are many conditions that, with early intervention and treatment, can do a lot about.
Most of the conditions that you pick up through newborn screening are rare, but have very severe consequences that can be alleviated through early intervention.
Won't go over current practice in state, can read on the handout.
Secretary Bremby requested technical assistance in March 05, had team in August 05. Received report March 06.
A team of 6 skilled people came to Kansas to provide technical assistance: Medical geneticist from NJ, the director of Wisconsin’s expanded newborn screening lab, the director of newborn screening at CDC, an administrator of good program in Nebraska
Report has everything they found when they came to the state. Did an assessment and found some flaws. Told us what it would take to put together an expanded program for KS. Shared a number of studies related to cost-benefit analysis.
Where are we now? During 2006 legislative session, had to open 65-180 (KS statute) because costs related to treatment formula (PKU) were out of control. The number of people participating had risen to 60. The treatment product is very expensive. In a three-year period, costs had risen from about $74,000 to approx $224,000.
They (consultants on technical assistance team) had never heard of any state that provided the PKU formula for free. Want to provide formula based on sliding fee scale. While the statute was open, looked at other things. Tried to change so we could, if we wanted, provide newborn screening for a fee. Most states do. This did not go through, but the sliding fee scale for PKU did stay in.
Also have provision on the bill for a Newborn Screening advisory committee. This should be implemented by July 1, 2007. So, between now and this time next year, we will implement something. We don't yet know what that is. This is one of the specific charges assigned to this group – to look into newborn screening – but don't have to get into the nitty gritty nuts and bolts (e.g., talking with insurance company policies by condition, etc.). Would like to take what the newborn screening advisory group comes up with and bring back to this group. You will probably have to provide more input to this sooner rather than later.
As an aside, Kansas has one of highest SIDS in the country...but SIDS is not a diagnosis, it's a rule-out. After you've done what you can, if it can't be explained, then it can be classified as a SIDS death.
Expanded newborn screening helps to explain some of those deaths with other reasons that are currently classified as SIDS.
Betsy: newborn hearing screening. Are there children missed by this?
Linda: We have a VERY good newborn hearing screening programs, one of the best in the country. Very high participation rate. 97% or so. (Some states are around 60% participation.)
*** Taking a 10 minute break ***
A KDHE organization chart was requested by a member and was passed out. (Copies will be sent to those joining by phone.
* Obesity and Health Education Presentation by Ghazala Perveen *
See PowerPoint presentation posted online.
Could this comprehensive program (Coordinated School Health Program) be at a statewide level?
Yes, think we can deal with these issues in a comprehensive model like this.
When we talk about childhood obesity, school health, health education, obesity, it's all over the board. There are many groups working on these issues, doing positive things. Think this group has an opportunity to survey what is going on - so if state is going to fund something, we know what's going on, what works, what the target is, etc.
Here at KDHE, if we try to prioritize, we do through our own lens.
You [Committee Members] bring in different perspectives.
Howard Rodenberg: One of my hopes is for you to look at that broad spectrum and prioritize.
Coordinated School Health Program is good. It is not as widespread as we want, not sure why.
Carol Massieon: If you want data to come from school districts, consider using KS Association of School Boards. This could help because 300 school districts in KS, opportunity to reach many schools.
Dennis Cooley: This is a huge topic. When talking about prevention, changing lifestyles...
Howard Rodenberg: If we are really serious about changing health in KS, we won't do it with adults. If you really want to make a change in our society, do it through schools.
Nick Rogers: American Academy of Pediatric Dentistry just incorporated obesity in to some of the national guidance.
Tom Ostrander: Don't disagree that there's a captive audience in the schools. As we look at this and develop programs, we can't forget captive audience we have in public education is not as big as it used to be with more home school and private education. Can't completely narrow our focus on who we need to include in that arena.
Vicki Hoffman: Schools are busy places with many, many priorities. Difficult to make that link…there is so much pressure on schools to get test scores up, to not spend money on school nurses and other non-educational programs...
Carol Massieon: Schools have to get wellness policies up, but each will probably have a different policy. It all comes down to what laws require us to do and following the money. If you want uniformity, will have to go to Department of Education or someplace that says this is the way it has to be done.
Doug Vance: We're identifying one of the problems is that we are not all at the same page. This Committee should create more awareness, get more data, etc.
Mary Ann Shorman: We do screening for heights and weights, but what do you do with that? It's so hard to approach parents about those things. ...all of these things have to start before school, has to start at home, too.
Betsy Hineman: When I talk to parents (through Parents As Teachers program) about their children's health, they start to examine their own health.
Dennis Cooley: Have trouble getting physicians to even doing BMIs on kids. If you have providers who aren't even passing this along, it makes it difficult for someone else (e.g., someone at school) to come in and say your kid is overweight. Involves changing not only kid's lifestyle but also adult's lifestyle. …the way we've been doing it the past several years hasn't been successful.
Consider role of TV and advertising, what has happened to our society in the last few years.
Gerard Lozada: Looking at the charts, 1976 seemed to be the magic year. What happened at that point? There was a change in society that began in late 70s and seems to have accelerated in 80s and 90s. Changes in advertising? marketing? lifestyles? more families with 2 incomes instead of 1? Some change in last quarter of last century that got us here…not sure what it is.
Nick Rogers: What are other states doing?
Howard Rodenberg: There are different models for different pieces. Some of those things are more institutionalized in some states vs. others. e.g., Arkansas gathers BMI on kids. California has a law that restricts vending in schools. As far as I know, no one state has done it for everything.
Nick Rogers: Is it an awareness problem?
Dennis: Think in last 4-5 years, awareness has increased. Now have people coming in saying worried about their kids' weight. Think they're seeing childhood obesity in the news more now. Didn't have that before. Maybe we're just taking the first step now. But we aren't changing our lifestyles yet.
***Next Steps***
Need to prioritize. Plan to meet quarterly, spend one full meeting on each topic.
Could probably have recommendations for newborn screening at next meeting.
Next topic: Newborn screening.
Also: Update on different activities, groups, advisory boards, etc., what's out there now. Dr. Rodenberg will work on this presentation.
After newborn screening: what next?
What is interface between Immunize Kansas Kids and this group? What is timeline?
Immunize Kansas Kids meets in June. This is also a new group. This group will probably not have any solid recommendations until late fall. This group could pursue other age groups (besides 2 yr olds) earlier, or this group could wait for recommendations from the other group.
As we look towards meetings in the fall, there may be legislative initiatives that may come up and this group may need to address. e.g., seat belts, access to care, tobacco taxation. Depending on volume of legislation, this might turn into a session all itself.
Q: Assume access discussion will include oral health? Yes, group agreed it would.
If have meeting in early legislative period, might be good to have a meeting to discuss legislative issues.
Upcoming topics for future meetings are as follows:
August: Newborn screening
November: Immunizations
January/February: Legislative issues
April: Obesity/Health Education
| Meeting 1 Discussion Board is now closed.
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