AMCHP 2005 ANNUAL CONFERENCE
DELIVERING RESULTS, IMPROVING PREGNANCY & BIRTH
February 19-23, 2005
JENNIFER HOWSE: Thanks, Jeff. And thanks, Peter, very much. And thanks to all of you for the wonderful work you do on behalf of moms and kids all around the country. I'm really happy to be here with you today. We at the March of Dimes, and there are a bunch of us here today, regard you all as genuine heroes, and it's fun to be in the company of heroes. And while on the subject of heroes I know you gave a much deserved leadership award to Marion Edelman, a great American and great advocate. So that continues to confirm the judgment that you all have excellent taste and you know leadership when you see it. So--
I want to say by way of qualification two things. First of all, I promise you will be out of here before 2:00. So for those who don't get cell phone reception and you don't get email reception and you're fidgety on top of that, and I can see a few of you, don't worry, I promise to do my duty to Peter and my country and have you out of here before 2:00.
The second qualification I want to make is that I don't want -- I ask you in advance not to remember me as a doom and gloom speaker. That being said, I want to invite us all to a realistic yet crisp assessment of the situation that we find ourselves in maternal and child health and in health and human services.
I don't think I need to tell this group about the many challenges that we face, but let me just summarize them very quick. Here we are in a situation trying to balance, improve patient care, strengthen outreach, seek new funding, build community ties, pursue needed research day in and day out and we all know that we are trying to, I'll say it, do more with less and less.
I know the conference from looking at your excellent agenda has focused on these kind of challenges and it is offering you opportunities for skill building and new knowledge and best practice and networking. And I hope you leave the conference with more energy than when you came to the conference, and I hope you do leave the conference strengthened by each other and with you're sense of commitment to the children and the moms of this country renewed
Now, off the record and just for you, my personal favorite quote for this time that we find ourselves in, off the record, is from Winston Churchill and it is when you are going through hell, just keep going. However, my official favorite quote for the conference on the record is from the American poet Henry Wadsworth Longfellow who kind of says the same thing but a little differently. Perseverance is a great element of success, writes Mr. Longfellow, if you only knock long enough and loud enough at the gate, you are sure to wake someone up.
So, I think our challenge today is just to keep knocking very loudly at the gate. And also to be quite mindful of what I call the giant disconnect between funding and the capacity to meet basic and critical needs. The giant disconnect. The last time I heard somebody publicly talk about a giant sound, it was Ross Perot talking about the giant sucking sound south if we signed after. Well ladies and gentlemen there is a giant sucking sound out there call the disconnect between funding and need. I'm glad we are laughing at it because humor is a great way to overcome diversity, but while we are joining together, I do think we have to remember that this is a very serious and pervasive problem not just in terms of federal dollars, but I know what you all are facing on a day-to-day level in your states and in your counties and in your cities.
There's no doubt that there's cause for celebration, that we do have emerging science, we do have emerging best practices, we are a learning community and we do have emerging best practices. And we also have improved technical ability which I will swing around a little bit when I comment on newborn screening. We also have improved technical capability which I thing will serve us well as we pursue improved services.
I also think it's very noteworthy, maybe other speakers have referenced it if not let me reference it very, very clearly. For the first time in 40 years the US infant mortality rate increased last year for the first time in 40 years. This ranks the United States 27th in the world in infant mortality -- in infant survival I should say. And I thought the New York times columnist Nicholas Christoph put it well, in a very articulate off bit piece just a couple of weeks ago. He said the average baby is less likely to survive in the United States than in Beijing or Havana. So what is wrong with this picture we must ask ourselves?
I think all of you know that the rate of prematurity, one of the leading causes of neonatal mortality, the leading cause of infant mortality among black infants, but one of the things I do now when I go across the country and reach out across the community March of Dimes, I ask all the business leaders assembled this question: Do you or anyone in your family or any of your neighbors or your colleagues have a baby that was born premature? Please raise your hand. I'm asking you that question, please raise your hand. I'm inviting you to look around because this is the incidence and prevalence survey. And the same thing happens in gathering of business leaders. And people start to look around and start to develop not a statistical feel or understanding for the problem, but a gut level feel for how this problem of prematurity is affecting the community.
I'll say very quickly that making the case for why prematurity is a very significant health problem, it's common we are now up to nearly half a million babies a year born who have a diagnosis or secondary diagnosis of prematurity. That's 12 percent for those of you doing the math. It's a costly problem. There has been analysis by March of Dimes showing this is the second year we've done the analysis. Last year we showed 15.5 billion dollars of hospital charges went for care for infants of any diagnosis of prematurity. That's nearly half the hospital charges for all infants in hospitalized in the first year of life. And I also don't need to remind this group that prematurity particularly among the most preterm babies and smallest preterm babies is a very serious problem. It is a key source of chronic disabling conditions. Mental retardation, blindness, deafness, cerebral palsy, learning disabilities, neurological delays, developmental delays, et cetera. And that these problems don't self correct. These problems go on as you know from your experiences and they convert from special needs children and special vocational services, et cetera, et cetera.
So this is a very, very serious problem and this is the national March of Dimes campaign where we have launched a multi year campaign addressing the problem, seeking a drop in prematurity rates to tie to Healthy People 2010. Our current rate is 12.1 percent of live births the Healthy People 2010 goal is 7.6 percent of live births. So you can see that's quite a dramatic trajectory of improvement.
We are please to be joined by the American Academy of Pediatrics and ACOG and A-1 as well as some very important corporate backing and corporate support has this problem of prematurity really negatively affects the bottom line for employers with respect to the payout on hospital charges and premiums, escalation of premiums.
Public awareness about the problem is a little tough right now. We do annual Gallup polls targeting different segments of public, are they aware of the problem, do they understand the nature of the problem. We are seeing a little bit of an increase. In '01 we did a baseline, 35 percent of the public understood prematurity to be a problem. By 2004 that was raised to 41 percent of the public in the national Gallup poll. So there's a little bit of movement in the right direction, but it's quite slow.
Awareness is tough. You all know in the not for profit world and public sector we don't have the same kinds of advertising and marketing resources as organizations have to create brand awareness and brand support in the market place. That goes without saying.
I think the other big challenge we have of prematurity is there's not a whole lot we can do right now. There's some very limited intervention around progesterone therapy, very important research that was done with support from NICHD, and that could probably -- a full application of progesteron therapy for women who have already had a preterm birth, that could probably drop rates of prematurity a percent or two if it was full scale application, fully funded, et cetera, but that might take some time.
Secondly, smoking cessation, I know it might be hard still for some of us in the room to believe, but 18 percent of pregnant women self report that they are moderate to heavy smokers. Sounds startling but it's true. Used to be worse but it's getting better. But nevertheless I think it's important to continue pressing for smoking cessation programs, educating women about the adverse effects of tobacco during pregnancy, seeking Medicaid reimbursement for smoking cessation, seeking smoking cessation reimbursement to be written into health plans, et cetera, et cetera. This is all the kind of work we've been doing now for a couple of decades and we need to keep it up.
The third area which most of you are probably aware of is the need for all of us to do better. Risk education around infertility treatments. We are starting to see quite an increase in multiple births both from implantation, multiple implantation as well as from the increase used of fertility drugs particularly in women of more advanced maternal age.
Half of twins and 90 percent of triplets are born preterm, and once you're past triplets, everybody is born preterm. And the health consequences of that are really quite severe. It's also a very tricky problem with respect to public awareness. This is about the risks involved with multiple births because when you pick up the newspaper or People magazine or so forth, you see the mother pushing the giant stroller with five babies, isn't that cute. And you know, you really have to read a long way in the article to find, if you find at all that a couple of groups like AMCHP or March of Dimes or the American Academy of Pediatrics do not warn against the risks of multiple births. I know you can appreciate the delicacies of that problem and that issue and all that goes into it. But this is an area where ACOG, and ASIM, Records Society of Reproductive Medicine, March of Dimes and others, we are really working hard to improve responsible consumer education around choices with respect to infertility treatment. So that's another area.
That's another drive around prematurity. But I think the main thing that I just want to say is that, you know, if we are going to stop the rise of prematurity in this country we have to have research breakthroughs and they have to be amenable to clinical translation, and we have to have the resources to move from clinical translation to full scale reimbursement of these different interventions. So this is going to be a long one. This is going to be a long one for us to all work on. And I just wanted to say that this is an area that March of Dimes will stick with and stick to. We've not backed away from public health challenges starting with polio, so this is an area that will take quite a bit of our attention I think for the next several years
I want to get back to the giant sucking sound of the disconnect between funding and critical need. I worry about this on many many levels. The first level of course as you might image is the prematurity campaign and what are we going to do for increase to stimulate increase funding when the proposed '06 budget increase for NIH is .7 percent? That's not much of an increase and that's certainly not going to be the kind of increase that drives the solution of public health problems like prematurity. We obviously need new scientific investigation.
If I look a little bit closer at the funding picture, basically we see a couple of things. One, instead of increasing program investments, the administration's '06 budget proposal calls for the level funding of Title V programs. Well, you know level funding is a cut. I know you're not supposed to say that, but I can say it because I'm just an advocate. Level funding is a cut. It's cut because there's something called inflation and it costs more to do things next year than it's going to cost to do things this year. So level funding is a cut and it's problematic. And that's another disconnect.
Also in the administration's budget proposal there's a big door open to the topic of how to narrow Medicaid eligibility and benefits. Now, it's not called narrowing Medicaid eligibility and benefits, it's called greater flexibility and cost efficiency. But I'm an advocate, so I can tell you that that's called -- that's narrowing Medicaid. It's conversation and a door wide open about narrowing Medicaid eligibility and benefits. And if this kind of proposal is an approved, it will no doubt result in the elimination health services most for the most vulnerable women and infants and children. Women who are at the greatest risk of an issue we care deeply about, preterm delivery. Another issue, babies born prematurely. You have significant medical needs. They depend on these programs. You know, about 40 percent of the births of the 4 million births in this country are Medicaid funded. So there's a big connected between the availability of Medicaid funding and a range of Medicaid services and full some eligibility and birth outcomes for, you know, 40 percent of 4 million kids.
Medicaid is the single most important source of coverage for maternity services. And then let's get started on EPSDT. We are maternal and child health people. We care deeply about prevention. We know from science, from policy, from best practice, from our own common sense, from what our grandparents have been telling us for centuries: Early is better. Let's get to the problem early. Let's figure out how to do early detection, early screening and early prevention. And EPSDT is not just a prevention life line, it's also a treatment service lifeline for millions of low income infants and children. This is not luxury. This medical treatment is not a luxury for them, it's a necessity. They are very unlikely to find affordable individual health plans in the private market. They are real unlikely to find those, plans that offer comprehensive screens and diagnosis and treatment services.
I really believe without the Medicaid guarantee for coverage for all medically necessary treatments, many of these children are likely to be denied these medically necessary treatments. And the vulnerability around Medicaid as you well know better than I who stand here for you is not just at the federal level. It's threatened from the states as states deal with their own fiscal problems. We've already seen -- I could start naming a lot. Let's start with Florida, Tennessee and New Hampshire, proposals that would change the way that low income kids and women receive services. I'm always interested in what the legislators say when they are contemplating these proposals. So sometimes when I'm in a more audacious mood, I ask them, you know, what are you basing this on what are the arguments that you're using here? Here they are, you've probably heard them all: Medicaid costs are spinning out of control and the program must be contained. That's their argument number one. Well, can we just be honest with each other about a couple of things? Number one Medicaid is a counter cyclical program. That means as the need rises, as people lose heir jobs, as people lose healthcare coverage, as private insurance becomes unaffordable even to the full time employed middle class, guess what, people turn to Medicaid and SCHP. Surprise. In fact, in 2003 the nationwide enrollment of children in SCHP rose to 5.8 million kids. 5.8 million kids. That's an increase of 9 percent from 2002 and it's a whopping 76 percent increase from 2000. So I would argue the fact that Medicaid costs are going up for this population actually means the program is working. It's serving as a safety net. It's reflecting the needs and the treatment needs of kids and their families.
Also, let's be mindful that states have expanded their eligibility to new categories of the uninsured. They've said eligibility levels that meet the federal minimum, they acknowledge that people have lost access to employer sponsored coverage in their states, and they have in a very enlightened way recognized in many states that Medicaid is quite an essential program for thousands and thousands of people in their respective states.
But here is my fav of the responses to Medicaid costs are going up and they are spinning out of control. Here it is: Children along with pregnant women and other non-disabled adults make up three quarters of the Medicaid population and they account for less than one third of the expenses, the expenditures in the Medicaid population. This is called an important fact. This is called reality. This is called a really good thing to say next time you have an opportunity to chat in a serious and authentic and important way with your elected officials in your states which I can do with more regularity and honestly perhaps and directness than some of you, as I am just an advocate.
Another political argument being made, another personal fav of us, people must learn to take ownership and responsibility for their healthcare rather than relying on public programs. Well, there's been a lot of discussion about the ownership society. Let's translate that into the public health policy. What we see is a very large attempt to transform public assistance from an entitlement program for poor and low income individuals into something very different.
In the State of the union address and the most recently released budget for fiscal year '06, President Bush outlined his desire to see individuals rely quote, on health savings accounts, unquote, and tax credits, for small businesses to turn association health plans, to turn to these to finance healthcare costs. And this does sound promising in theory. To empower individuals with choices and responsibility to cover their own healthcare. But I think we need to take this with at least a grain of salt or at least be cautious or at the very least be thoughtful on behalf of the populations we represent. Because I think these ideas could have serious implications for both pregnant women and children with special needs.
Let's look at EPSDT. Kids with birth defects and other special needs could be left without access to care. These reformed to Medicaid, shifting Medicaid beneficiaries to the private market place could simply mean a loss of services to many kids without protection around risk, protections around cost and protection around scope of service.
And absent the safety net of Medicaid, pregnant women may well encounter a lot of difficulty in finding affordable comprehensive healthcare with maternity benefits. Healthcare services related to pregnancy and child birth are typically absent from health insurance policies sold in the individual market. In '03, 12.6 million women of child bearing age were uninsured. 12.6 million women of child bearing age were uninsured. And uninsured women received fewer prenatal services than their insured counterparts. And while this is a data driven observation, I'm sure it also makes enormous practical sense to you all as well.
These women also report greater difficulty in maintaining the care that they need. In fact, in only 13 states can women of child bearing age buy maternity coverage through individual policies. In only 13 states can women of child bearing age buy maternity coverage through individual policies. And even that coverage is extremely expensive, and in most cases require that the women prepay the cost of delivering the baby. Okay, so it's important to talk about personal responsibility, it is. It's important to talk about individuals owning their healthcare and owning responsibility for the life choices and decisions that they make. None of us argue that. Personal responsibility is a real and important thing. But we have to get real about what are the practical consequences and what are the vehicle and opportunities that would be offered as such a transition is contemplated.
So these are just a few things to think about. Coverage for women who are already pregnant is simply not available at any price in any individual markets, even state high risk pools usually consider pregnancy a pre-existing condition and therefore exclude maternity care from coverage.
So these proposed cutbacks and changes and reductions in Medicaid, our health safety net are yet another example perhaps just on a theoretical basis right now, but another example of a disconnect between funding and need. So I don't think we can let the progress we've made disappear.
We've made a lot of progress. The overall number of uninsured has grown. On the other hand, the number of children without insurance has actually declined. This is a good thing. From more than 10 million in '99 to 9.1 million in '03. This is a direct result of the lifeline provided by two programs under siege, Medicaid and SCHP.
So I believe our past efforts to protect these programs must rise to the level of the present need. We've got to make sure our policy makers are awake and listening so the knocking on the gate's got to be quite loud. And I think it's also important, and one of the reasons I was so honored and pleased to travel here today, that we work more in partnership with each other. Forget our favorite provisions of pieces of legislation, find ways to develop early consensus around what is essential for the populations we serve and then speak together with one loud, well-knit together voice.
Challenges we have in the current environment are too big for any one organization to overcome. So I would really invite us and invite you in this conference to conversations around creating the 21st century advocacy paradigm.
I know it's tough to weave programs together on a state level, programs that on their face don't seem to relate, Title V, Title IX, Title XXI, state programs in between. It's tough to do, I know, I've been there. But we need to continue to find ways to do it and I know a number of you are. I think there's a bunch of practical improvements that we need to advocate for. Presumptive express lane eligibility, 12 months continuous eligibility, elimination of SCHP waiting lists, wrap around or comprehensive coverage for kids who have private health coverage that is limited in its benefit scope who meet other financial criteria and I think that I think that states should have the option to use Medicaid and/or SCHP to cover legal immigrant children. This is a very, very important issue for us and one that is getting all beat up for the wrong kinds of reasons.
I want to comment quickly on the troubling matter of uninsured kids, that 9.1 million children that are uninsured. I think we need to fight, keep our current programs, make sure that every child has access to affordable and comprehensive healthcare coverage. But I want to put out a number so that nobody has sticker shock if somebody throws this back at you. Here is the question: What is the best guesstimate, what's the best estimate? What's a decent estimate of how much money would it cost over ten years to provide health insurance coverage for these 9.1 million kids? Okay. So here is the answer: 250 billion dollars over ten years. Before anybody has, you know, post lunch indigestion over this, let's just size this and keep in mind that the new revised estimate for the drug benefit for seniors that passed is 720 billion over ten years. And I'm not, believe me, I'm not trying to raise a flag for inner generational warfare, that's not the point. It's that grandparents have grandkids, and they have a dog in this hunt, too, they care about this as well. And this is an area where we need to continue to work in partnership but we also need to be very mindful that to cover 9.1 million kids which we need to do is going to take some money. And I don't want us to stop talking about the need to cover these kids simply because we've got such battles royal going on in our respective states and at the federal level. So I just put that forward to invite us to continue to talk. And you know, we don't get metals for the 95 yard dash, we get metals for the hundred yard dash. And we are not finished yet on the subject of covering kids.
So I'm going to close now because I made a promise to you by reminding you that we have a lot to build on. We have a lot of opportunity to build on. There have been overall reductions in the prevalence of smoking among pregnant women. There are wonderful community partnerships that are being built. You all are doing a great job of weaving together different resources. We are starting to -- the New York Times, notwithstanding, we are starting to really see some very, very important forward motion in expanding newborn screening in states which is a subject that the March of Dimes cares very deeply about. And I want to honor the leadership of Dr. Peter Van Dyke and Dr. Michelle Purrier who led the charge to create a scientific basis and policy and report which in the next few weeks I understand will be in the public domain to create a basis for successful scientific advocacy for New York screening and that will save lives. It's very very important area for us.
29 tests is where we are focused right now for newborn screening. So don't remember me for doom and gloom. Remember me for inviting us to think about a new advocacy paradigm for the 21st century that speaks to greater partnership and a louder voice knit together. Remember me because I invited us to knock even louder at the gate. Remember me because I put a price tag on 9.1 million on uninsured kids and invited us together to continue that conversation and to continue that battle. Remember me because I believe you all are the real heroes for kids and for moms. I so respect the work that you get up and go to the office and go out in the field and do every day. And we want to do what we can do at March of Dimes through our volunteers and our staff to continue to work with you and to support you so that together we can take on these difficult times. We can take on and acknowledge the disconnect between funding and service. We can acknowledge that the public health infrastructure and public health services and human services, yes, are experiencing increased burdens. But we do have great opportunity to also put forward, to be optimists, to be calculated optimists in this battle. To talk about the technology, to talk about new information systems, to talk about the promise of scientific discovery, to talk about the opportunities to pool resources and make our programs secure and whole.
I'll close now with this: Knocking persistently on the door will assure that at some point someone wakes up and we will enter. We will improve mothers' and children's lives, and we will change the future. And we will do this together.
Thank you very much.