Meeting 2 Notes
Members Present: Dennis Cooley, Mary Baskett, Shannon Cotsoradis (for Gary Brunk), Leadell Ediger, Betsy Hineman, Vicki Hoffman, Gerard Lozada, Carol Massieon, Rand O’Donnell, Tom Ostrander, Nick Rogers, Penney Schwab, Mary Ann Shorman, Doug Vance, Mim Wilkey
Staff, Presenters and Guests present: Paula Marmet (KDHE/Office of Health Promotion), Michael Runau (KDHE/Immunizations), Willie Craft (KDHE/Lab), Paul Getto (with Carol Massieon), Linda Kenney (KDHE/Bureau for Children Youth and Families), Zach Leeker (family member), Michelle Leeker (parent), Norm Hess (March of Times), Jamey Kendall (KDHE/Children with Special Health Care Needs), Melanie Warren (KDHE/Newborn Screening follow-up Nurse), Colleen Peterson (KDHE/Lab), Aidan Loveland Koster
*** The following text represents notes taken at the meeting. 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 or corrections to Connie Satzler at csatzler@kansas.net. ***
**Paula Marmet: Update on Coordinated School Health**
About 100 schools have implemented.
See brochure and handout.
Larger sheet is a graph showing what school health topics schools have focused on.
School health advisory council is the 3rd sheet, who has agreed to help out in developing priorities. In July, the group generated a list of priorities. They will look at list and identify best practices for intervening. This is not about providing services to kids. Rather, Coordinated School Health is more about policies and system changes, providing opportunity for physical activity, smoke free environments, for example.
**Michael Runau: Update on Immunizations**
See Immunizations handout.
Discussed progress on immunizations, handouts available for state immunization conference.
Kansas Kids Immunize has a website with detailed information. See http://www.immunizekansaskids.org/
The WebIZ is linked with vital statistics; there is a nightly update. Birth record, Hep B update would be included. For more information on WebIZ, see http://www.kdheks.gov/immunize/webiz.html
Q: What happens when someone moves?
Michael Runau: If they come into a new providers’ office, and provider is a user of this system, they would continue to be tracked.
Q: What if move out-of-state?
Michael Runau: Well, we can link with other states, and we did during Katrina. That capability is there, but not everyone is at that level at this time.
Q: What about a 4-year-old who moves to KS permanently?
Michael Runau: We could link with some states because it is very advanced. But not all other states are. It would depend on where the child came from.
Dennis Cooley: Biggest problem seems to be getting historical information into the system. There are a large number of kids with historical data out there that we don’t quite yet have.
Michael Runau: We are working with schools to get historical data; we aren’t quite there yet.
**Linda Kenney: Child Obesity Workgroup Announcement**
Have been asked to convene childhood obesity workgroup with members from this group as well as members from the Governor’s Council on Fitness
By Nov 1, prepare draft policy recommendations to reduce child obesity in KS.
By Dec 1, submit to respective groups for feedback.
By Jan 1, have those finalized policy recommendations for submission to Governor for inclusion in policy agenda.
This is part of the Governor’s Health Kansas initiative. (See http://www.healthykansas.org/ )
Three KDHE staff members will coordinate the work group: Jennifer Church, Allison Koonce, Brenda Nickel
**Newborn Screening Panel Presentation**
*Panelist #1: Willie Craft, Laboratory
Discussed process: pre-analytical, analytical, post-analytical.
Passed around newborn screening laboratory form.
Front sheet – demographic (have in two languages – English and Spanish)
Educational pamphlet is attached to each form
When lab receives form, they enter demographics and use heel stick for testing.
First, lab evaluates to make sure it is a good sample.
They punch a one-inch dot out, wash dried blood out and reconstitute. Listed conditions tested for.
Their intent is to create a risk group rather than a definitive diagnosis. There are some false positives. We follow-up on the high-risk group. We re-screen the low-risk group. Once we finish testing, we deliver reports to providers by mail or by fax.
We also have a monitoring program for PKU babies. There’s a period those with PKU go through where they are adjusting values. While they make adjustments, they do finger sticks.
Q: What about the 6% error rate?
Typically, this is due to collection errors. Examples: paper is put to heel instead of using a drop of blood.
Q: Can collection errors be corrected?
Yes, but as you work with the hospitals, they get new staff who need to be re-trained.
We are trying to determine which ones are borderline and which ones are not at risk.
Worse case scenario – false negative.
We go ahead and test the sample, even if they think there’s a problem. Also retest for 2nd sample.
Dennis Cooley: It looks like it should be simple to do this, but it’s not.
Carol Massieon: What about children that aren’t born in hospitals?
Willie Craft: The testing still has to have it done. With birthing centers, midwives, for example, it is still required.
We send the collection kits to midwives. We don’t make a distinction between physicians, midwives, etc. Send those to everyone who delivers babies.
Gerard Lozada: What happens to unused portion of sheet? How long do you store? What about DNA?
Willie Craft: We store for a month. We have special storage techniques. We only use one complete blood spot per test. We give ourselves leeway in case we have problems and need to do additional testing.
*2nd Panelist: Melanie Warren, Newborn Screening Follow-up.
Melanie explained the follow-up process.
Melanie Warren: All tests that are borderline are faxed to our office, as well as level of abnormal results that are likely. We call the physicians immediately on those. There are occasions where babies are lost to follow-up. Melanie shared their numbers from 2005. The program has 6 consultants: 3 in Wichita and 3 in KC. Usually they work with physicians and physicians work with parents, but occasionally parents will call KDHE staff directly.
*3rd Panelist: Jamey Kendall, Treatment
Jamey explained the treatment aspect of the program.
The program until last July was fairly simple. We received information once a child was diagnosed with sickle cell disease, galactosemia, congenital hypothyroidism, PKU, or hemophila. For a lifetime, we provide food treatment products.
Last session, we tried to go in and change newborn screening; ended up with legislation requiring KDHE to check financial information before services can be provided. We provide PKU to approximately 60 families. There are probably only 5 families getting covered through insurance. The challenge for those diagnosed: as they get older, difficult to stay compliant with diet. We have allowed flexibility to patient as much as possible. We think it’s important to offer all those food choices to them. We have some adults in the state now who are in supportive living facilities because are mentally retarded. They were not treated.
Q: What are financial guidelines?
Jamey: 300% of poverty, they look at. Under 300% poverty, cover 100% of costs. Up to 300% poverty, cover 100% of costs (I think). Over 300%, cover 50% of costs. 300-500%, 500-700% [See http://www.kdheks.gov/shs/index.html#eligible for more information.]
Q: What about coverage for things like consultant fees?
Jamey responded. [Did not capture answer.]
Q: Are parents told anywhere along the line that they could pay to have additional testing?
Willie Craft: We were going to put this in the pamphlet, but we did not because we thought were going to get expanded newborn screening.
Linda Kenney: There is a federal mandate to share with parents. Physicians should also be informing. Individually, it costs about $100 per child. We could do much more reasonably priced if statewide. Also depends on what you’re including (e.g., lab tests, follow-up, etc.)
Dennis Cooley: His parents that are getting lab tests only (no follow-up)…it costs them about $100. Thinks most providers are not telling patients about this.
Linda Kenney: KDHE website also advises parents to do this.
*4th Panelist: Norm Hess, March of Dimes
See March of Dimes handout.
Norm Hess: Mission of March of Dimes is to improve health of babies by preventing birth defects, premature birth, and infant mortality.
As of August 15th, approximately 19 states and DC have expanded to full screening panel of 29 conditions. Another 24 are on their way (most are missing only 2). This leaves 7 states that screen for only 7 – 18 conditions. Kansas is one of 3 states that screens for only 7 conditions. We strongly encourage expansion of newborn screening in Kansas.
Norm described anecdotal story of two Zacharys in California. Both were born about the same time. One was screened for a condition; one was not. Now, one is healthy; one has sever problems.
Tom Ostrander: What is the annual cost?
Aidan Loveland Koster: Program costs about $900K per year. Estimated cost for total expanded program is $2.2 million
Carol Massieon: Don’t they see $2.2 million as a lot less than what it would cost to screen?
Norm Hess: Insurance companies would consider adding. Medicaid would add, too.
Dennis Cooley: Came up with cost-sharing plan with Medicaid, Insurance companies, and hospitals (to certain extent). These three would be willing to cover about half of total cost of what the program would be. Statutory change has to happen for this program to be implemented. This wouldn’t cover all the costs of an expanded program. We would be asking for additional annual State General Fund.
Shannon Cotsoradis: Are there other political obstacles?
Norm Hess: They are minimal. Just figuring out how, the logistics.
Dennis Cooley: It’s not that we shouldn’t expand. Some of it involves which tests to use, how to implement.
Norm Hess: As long as effective treatment is known. For all of these, there is a known treatment. There is another entire list for conditions that are detectable, but where there is no known treatment.
Gerard Lozada: You mentioned 48-49 positives from what is tested. Is there an estimate that you can give for those 29 conditions – how many positives would we pick up?
Willie Craft: When you put all those together, you will find something about 1 every 1,000 births.
Linda Kenney: We think we would pick up 48-85 each year. (So double or more what we have now.)
Q: Would there be additional costs for staffing needs? What about start up costs?
Aidan Loveland Koster: Exact start up needs haven’t been determined. 2008 would be target starting period. Haven’t been able to figure out yet how much start-up money they will need, but those projected numbers do include all projected costs (staff, follow-up, treatment materials, etc.)
Michelle & Zach Leeker: Michelle shared their family’s story. They gave a very moving presentation.
** Dr. Howard Rodenberg. Report on advisory boards and task forces
Immunize Kansas Kids – joint project between KHI and KDHE.
See http://www.immunizekansaskids.org/.
Kansas is in the bottom 10 for immunization rates. We have improved, but we are still towards the bottom.
The Governor had task force on immunizations. Some were action items, some were study items.
The Blue Ribbon Panel study of financing is almost done. The financial structure is probably not a factor in immunizations. There are different kinds of financing for immunizations.
A number of studies are not moving as quickly. So we won’t get those results as quickly as we had wanted.
The study on providers hasn’t been moving as quickly as we wanted.
Constituencies 4 groups. Policy issues, other 3 groups. [Did not capture entire comment.]
We are in the process of developing policy and budget initiatives that we think will be consistent with Immunize Kansas Kids recommendations, when released. We will go ahead and move with some of these.
One we’re looking at is linking immunizations to the WIC project.
I also wanted to talk about the Childhood Obesity Group.
We have an opportunity to have some impact with this childhood obesity group. We are looking for quick-hit things this group can come up with to get out there before legislative session – can include policy that doesn’t require legislation, a point of view to advocate before the legislature even if this is not the group that comes up with the ultimate answer. A thorough investigation of best practices will take time. This group will provide a quick hit. What are the 1-2 things we can put forward that will make a difference?
With that clarification, hope this focuses role of the childhood obesitygroup.
Reports on other Kansas committees and issues…
HC4 – Health Care Cost Containment Commission (or something like that)
Group he shared with is dealing with coming up with clinical data elements. What data elements would we want to collect on kids?
Kansas Health Policy Authority
One of the things that came out of this is the idea that every child under 5 should have access to health care. If this concept does show up in governor’s agenda, this group will be asked for feedback.
Maternal and Child (MCH) Health Funding
MCH has experienced funding cuts – 7% last year. There will probably be more funding cuts. There is currently no relation between how they get money and how they are distributed to counties. We are working with KALHD to develop new funding formulas. We want to share the results with this the group.
Any questions??
* Dr. Rodenberg on Newborn Screening
It is important for this group to talk about newborn screening due to the timeliness of this issue.
We had a charge from the legislature to develop policy options.
Newborn Screening Advisory Group was charged to draft policy on how to get newborn screening going.
We have a policy outline (we will try to circulate to this group for input and approval).
We would like to think it’s all about the kids, but at some point, it becomes all about the dollars.
Initial discussions on what panel to use – the full 29?
Should we outsource or keep in house? We decided to keep it (screening) in house.
We estimated that to do the entire newborn screening panel for free, to do the entire expanded panel, to do follow-up would come to $2.2 million. Now the budget is $900 K now. We are looking at $1.2-$1.3 million for state to absorb.
One of reasons the proposal didn’t get through last time was the perception by insurance companies and hospitals that they were being asked to pay without the opportunity to provide input. They were concerned that they weren’t involved, and they were concerned about exactly what they would be paying for.
Insurance – test is a good thing. But if already paying for treatment costs, what is the difference in paying for it up front or later? [Did not capture complete comment.]
The Health Policy Authority is completely for, but would like to clarify how to do.
Estimate costs for expanded panel:
• State continues to pay $900K for what they currently do.
• Breaking this into testing, treatment, and referral – about $800K was testing. Treatment side was about $200 - $220K.
• Able to come to an agreement that hospitals, insurance, and Medicaid are willing to pay for testing (about $30). We have a verbal agreement from private insurers, covering about 80%-90% of births in Kansas. Hospitals – Kansas Hospital Association – are willing to eat the cost as long as they aren’t asked to cover treatment.
• We are looking at $800 K or so from above players. We are asking for $200K or so from leg. ??
• There are still questions about start-up costs. We need equipment – should we borrow against treatment $, or create legislation for start-up funds?
We will circulate the draft once it is ready. Hopefully, this group will be able to provide a big-picture perspective to this issue. We know that we need to present something to the legislature. This group will have the final say on what to send to the legislature. Between then and now, we’ll ask people [CHAC members] to have comments into us by the end of September.
Gerard Lozada asked about numbers that don’t exactly add up; Dr. Rodenberg said he was probably mis-quoting some of the numbers (he gave approximate # from memory only). The numbers will be listed in the draft they receive.
Another wild card – do we need to build in a marker for inflation?
The budget is very tight.
Carol Massieon: What, exactly, was the concern of hospital and insurers?
Howard Rodenberg: For hospitals – testing is okay, but they were concerned they would be mandated to pay for treatment when that’s not something they do.
Insurers were concerned about paying for treatment when they would end up picking up the cost of treatment, anyway. [Did not capture entire comment.]
Rand O’Donnell: Hospitals continually have one more thing added to their plate.
Rand O’Donnell: One clear element on this – I would like for the task force to be worried about the logistics of doing it more than the financing. Clearly, the cost will be recovered multiple times over for the state only, just looking at the number of children who would end up on Medicaid. The state itself will save that much money, even without taking into account the federal matching $.
Rand O’Donnell: Insurance companies are on a quarter to quarter or a one year mentality. They don’t think along prevention lines. Our government doesn’t think along those lines either. But we have to be able to say we’re going to save $. It really does save money, then will get down to real business - it makes life better?
Why the need to look for other financing options – why won’t the state finance completely?
Howard Rodenberg: In order for this to be on the agenda for the next legislative session, we did have to go ahead and put the request “in the hopper”.
Leadell Ediger: How much did you put in the hopper?
Howard Rodenberg: We asked for another $200K from the legislature.
Leadell Ediger: What about the startup costs?
Howard Rodenberg: This depends on how we are able to juggle these agreements – it’s $450K for 2 machines (I think).
Mary Baskett – how much would it be to go to the 49? (or 45 – whatever the # is for the complete panel)
Howard Rodenberg: The reason we went with 29 was because those are the ones we can do something about.
Sounded like they would go ahead and work up the costs for this.
If we go to 45 – we may not be able to do anything with that particular infant, but can offer counseling to families. We recommended 29 because we wanted to make it as palatable to the group as possible.
Also, this is changing technology. Think the program will end up being fairly flexible.
Willie Craft: It is relatively new technology. There’s lots of potential to expand. We can get multiple tests from one blood spot rather than one test per blood spot.
Dennis Cooley: Is there anything about a constant advisory board or group that can offer technical advice?
Howard Rodenberg: Good point; I don’t know that that is currently in our report. We will put that in.
About 20 states do full recommended the panel of 29.
Gerard Lozada: You don’t want to pass the fee on the parents, correct?
Howard Rodenberg: Yes, that’s correct. We’re trying to keep costs away from the parent whenever possible. It is possible hospital and insurance companies will pass along, and families will pay the $30 if they are self-pay.
We’ll send out draft policy for review.
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