Attendees:
Zineb Ammous, MD
Lola Cook, MSLGC
Rebecca Cunningham PhD
Luis Escobar, MD
Megan Griffie, PhD, MS
Jessica Peachey, MPH
Christine Pokrajac, MPH
Kim Quaid, PhD
David Weaver, MD
Melissa Wesson, MS, CCRP
Janice Zunich, MD
October 27, 2016
Dr. Zunich: is retiring next year (possibly part time) They are not planning on replacing this role.
Rebekah Cunningham:I am theDirector of the EHDI program, and Dr. Escobar is our champion!
Megan Griffie: Updates from state – We are working on SCID and 24 hour rule. We have received feedback from legal to make changes on the wording. It takes 28 days until the executive board will vote on it. We are planning on early 2017. Our original plan was to add all of the additional RUSP conditions simultaneously. There are currently 4 conditions on the RUSP that are recommended nationally, and SCID has been on the longest,and the need is apparent in Indiana. Adding SCID will increase the lab fee by $10 per baby.
Dr. Zunich: Is that SCID alone?
Megan: Yes
Megan: The other three are Pompe, X-linked, and ALD, and MPS1. Our plan is to move forward with adding them in 2018. We are moving forward with SCID, and looking for all of the changes in 2017.
Dr. Zunich: Do we have an idea how many kids are getting enzyme replacements are on these around the state?
Dr. Escobar: We have 4 kids with MPS, 15 OI’s, 1 ALD. That gives you an example of how many kids are on infusions just at our center.
Dr. Zunich: We have only had 5 kids that had home infusion in the 30 years in our area.
Dr. Escobar- I think the labs are pushing for more detection and testing, and some are actually offering free testing.
Dr. Escobar- Do you think SCID will pass soon?
Megan: Yes, SCID is going to go through. The only hesitation is the increase in cost for the panel which goes to the families. The other conditions will continue to add cost, which is our main concern.
Dr. Zunich: When you present, is it with a legislator? Who comes with you?
Megan: It is all in writing. If we do get letters of support it is from the community organizationsor doctors, which is always helpful. We do work closely with organizations to push through these things. You can write a letter directly to me with your support of adding XYZ.
Dr. Zunich: Would a letter from IGAC be helpful?
Megan: Yes
Dr. Escobar: I received a letter from the Bone Marrow transplant center from IU, and they wondered why IGAC hasn’t written a letter.
Dr. Zunich: I think it is a great way to let the legislators know that we exist.
Dr. Escobar: I did send a letter to Medicaid to find out more about Medicaid reimbursement.
Megan: Barb Lesko was unable to attend and she wanted me to send along lab updates. Working to extend hours on weekends, adding a weekend courier, all of this will be included on the 24 hour rule and grant funding that goes along with it. We hope by adding a courier services to the weekends, we will improve midwife participation. We feel that it is a barrier to their participation is getting the heelstick results to the lab in a timely manner.
Dr, Zunich: Did you do some type of a needs assessment?
Megan: We meet on November 12th, and we hope to build a focus group to help this community.
Rebekah: The EHDI program has been doing a lot with the midwiferies, we now have 5 midwife centers that we have given equipment to. It’s not really their lack of willingness to participate, it is because they are intimidated by the system.
Megan: We passed the legislative rule of IBPDPR to renew the use of IBDPR. That means that we are going to continue to collect birth defects in the state of Indiana.
The renewal of IBDPR is allowing us to move forward with a Zika surveillance project established by the CDC. The CDC has granted all states funding based upon incidence rates in need. We put together a team specifically to monitor Zika.
Dr. Escobar: Some of these cases look like fetal brain disruption, and these cases are pretty classic. We wonder if ZIKA has been here awhile and we haven’t recognized it. There are certain phenotypes that I recommend that you should look at. When you are ready to develop the protocols,I suggest that you meetwith geneticist.
Lola Cook: I have a huge interest in this area, and I would definitely like to be involved.
Dr. Escobar: Can anyone be involved?
Megan: If you have or know of ICD-9 or ICD-10 codes, or specific phenotype expressions that could possibly be linked to ZIKA, please let me know.
Lola: Are there travel related indicators that suggest consulting with one’s doctor and where can people go for questions?
Megan: The state has teams for Human Surveillance (Pregnancy Registry), Mosquito Surveillance, Labs, Communications, and Emergency Preparedness, and MCH.
Rebekah Cunningham: A couple of months the EDHI program sent a letter to hospitals letting them know that ZIKA is a risk factor with hearing loss, and we have had several of them contact us with that. We have shared the CDC as a reference to educate the families. Yesterday, I received a link from the CDC on the first retrospective study on hearing loss and ZIKA. I am hoping that the hospitals have that material for ZIKA education.
Megan: We are in the process of putting a team together to tackle the ZIKA outbreak.
Lola Cook: Have you done any outreach to genetic counselors to form a team?
Dr. Escobar: We really don’t know how long ZIKA has been here. These are questions that we still need to answer. It is possible that we have ZIKA cases that are not travel related.
Dr. Zunich: Do you guys have a link to information on ZIKA on your website?
Megan: When you first access our ISDH webpage, you will find ZIKA as the first thing listed. We do report bi-weekly to the CDC, and as the reports come in we will report regularly to our ISDH website, and will update it appropriately.
Megan: Our future plans at ISDH areto report birth defects and infant mortality in real-time instead of retrospectively. Right now we are about 5 years in the past. Our data is from 2010-2012, and we should be reporting on 2015. I just wanted to open that up to the team tosee if anyone has suggestions.
Dr. Escobar: As part of the Infant Mortality committee, one thing that frustrates me is that we don’t include birth defects as an aspect of Infant Mortality.
Megan: Part of the reason that we are unable to link these two pieces is because we are looking at IBDPR retrospectively.
Megan: Do we have any geneticists beside Dr. Hainline that would be willing to get involved? Our initiative would ideally be tying in birth defects and Infant Mortality.
Dr. Ammous: Yes, I would.
Dr. Zunich: I sit on Child Fatality Review group for Lake County, and our losses are more roll-overs, and suffocation from co-sleeping. We are trying to address, and work on stuff for sleeping awareness, and safe sleep practice. It’s a message that has to be out there continuously. That is our issue up here.
Megan: Okay.
Dr. Zunich: They were trying to put an Infant Mortality report together, and they wanted to find out our issues. There are kids that die rapidly from neonatal deaths, and very few make it to the coroner. We don’t seem to be catching the data. When they have major malformations, sometimes they don’t even do an autopsy.
David Weaver: As an affiliate of the FIMR committee with Marion County Health Department; a federally funded program, we see a lot of babies that have congenital defects and syndromes. For example, we had a FIMR meeting on Tuesday and we had a baby with a congenital anomaly that resulted in deathdue to diabetes.
Dr. Zunich: Are you linking IBDPR with death certificates in order to capture with fetal death?
Megan: No, not yet, but we could have our epidemiologists look into it.
David Weaver: In Marion County they use death records, contact the provider, and interview the mom’s.
Dr. Zunich: We cannot rely solely on death certificates, because it is possible that they miss things.You have to have a person to review records, and you have to have a salary, and there is no longer funding. Do you get any data from FIMRat the county level?
Megan: Each local department has Home-Rule. The data they collect and needs assessed within the county. We do not tell them what to do unless there is a state of emergency.
Megan: Whoever is collecting the data (most like Epidemiologists) they are going to get a good grasp of region specific needs.
Megan: Also, before I forget, Dr. Glenn Bingle has a patient looking for a connection regarding genetic angioedema. If anyone knows anyone that can help, please send me an e-mail and I can get you in contact with Dr. Bingle.
Megan: With the new Grant Year coming up in early in 2017, we are looking to address the disparities within Infant Mortality. The Healthy People 2020 goal is 6 in 1,000 deaths. We currently have 10 zip codes where the zip codes is 10 in 1,000 deaths. We are looking for grants that focus on specific regions, such as disease follow-up, education, and community.
Janice: Will this limit the scope of the initiatives?
Dr. Ammous: Where can we find that list with zip codes?
Megan: I have the list and I can share it.
Megan: That is all we have at the state. Any questions?
Lola Cook: Candy is no longer at St. Vincent. I recommend updating the contact list.
Megan: Please send an e-mail asking if your coworkers have resigned since last year’s IGAC meeting or if there are new employees. Thank you so much.