Transcript of the Healthy People 2010 Regional
Meeting
New Orleans, Louisiana
October 21-22, 1998
U.S. Department of Health and Human Services
Office of Disease Prevention and Health Promotion
Session III:
Preventing Diseases and Disorders
DR. CLINTON: I think we can begin. Recall the general rules. Three minutes. We have a light up here that will flick onto yellow when there is only one minute left.
Each of you can make one comment representing you or an organization on a specific chapter. We will spend not more than 20 minutes on any of the focus areas or chapters that we move forward.
I will introduce the federal representative, who is providing some oversight for the specific focus area. They range across the various components of the Department of Health and Human Services. NIH and CDC are prominent among them. I will identify them when we do that.
Please remember to introduce yourself by name and by organization, and if you are representing that organization. When you conclude your comments, move to the table at the back where my colleague will capture your name and specifics, so that we match your taped presentation to the name.
We will begin with focus area number 16, which is arthritis, osteoporosis, chronic back conditions.
We have two with us today, Reva Lawrence and Dave Moriarty from CDC. Are we too early in the day for chronic back problems?
You recall some comments were made earlier, these are new components to Healthy People 2010 and it looks as if we are somewhat on the mark on that one.
Recall, you can send comments in by mail. You can send comments in electronically. You got the e mail addresses in your material and we have got that information for you, too, if you missed it.
If there are no comments on focus area 16, we will move to focus area 17, the broad spectrum of cancer. Reva Lawrence is representing NIH in that category.
There have been a number of issues raised by other groups that deal with, obviously, the cancer among minorities. The absence of data in some subsets is an issue that we are trying to sort through.
We have all been concerned that various groups recommend periodic screening for this or that, and it varies from someone else, whether it is NIH or American Cancer Society. We are trying to sort through some of those issues.
I am not certain that they can be resolved entirely, but they are things that, as a nation, I think we continue to give attention to.
There being no comments on cancer, we will move on to focus area number 18, which is diabetes. Reva Lawrence from NIH and Dave Moriarty from CDC are assisting on this issue.
You recall diabetes is one of the focus areas for the racial disparities discussion. There are some interesting graphs in the back of the room that you might catch, and you see the extraordinary disparities in diabetes, and particularly the complications, the end stage renal disease, peripheral nerve endoscular disease, which results in unnecessary amputations.
We will move ahead with focus area 19, disabilities and secondary conditions. Chris Kochtitzky is the work coordinator from CDC on that activity.
MS. SCANDLIN: Good morning. I am Donna Scandlin from the North Carolina Office on Disability and Health at the University of North Carolina.
I have three main points I want to present this morning. One is to keep the disability chapter. We are delighted to see it there.
Include people with disabilities as a special population in other chapters. This is a large group of people.
Include disability as a demographic variable. Persons with disabilities are a significant subset of the population, and a group that needs to be identified and tracked in Healthy People 2010.
The current estimate of the population of persons with disabilities in the United States is 51 million. This figure is, indeed, an estimate and there is a need to more accurately identify people with disabilities.
Therefore, one recommendation is to incorporate questions on disability into all existing and future data collection efforts conducted by the Federal Government.
This recommendation supports the first objective in chapter 19, disability and secondary conditions. Include a comparable core set of items to identify people with disabilities in all data sets for Healthy People 2010.
I would go further with this recommendation and say that, in addition, we should identify disability as a demographic variable in all federal data collection.
This would include a demographic question that would identify a person as having a disability and may also include several additional disability specific questions to better define a disability.
Disability is a health disparity issue, a special subpopulation that should be identified by a standard demographic variable.
Disability is one more characteristic of the individual that indicates service needs and service utilization.
In light of what we know, persons with disabilities have been historically underserved. Despite the diversity of primary conditions, there is some degree of universal experience across this diversity.
Putting this in the context of public health, the assurance function and the need to serve the underserved, this could be addressed as it has for other populations, by identifying disability as a clear subset in data systems for service delivery, outcome measurement and quality assurance.
For example, only recently the MCH bureau began requiring the collection of the identifiers Hispanic or not Hispanic, based on the need for certain accommodations in service delivery.
Like people with disabilities, there is diversity in the Hispanic population. People come from a variety of countries in South America, Central America, and Puerto Rico --
DR. CLINTON: Ma’am, you need to summarize now; you are over time.
MS. SCANDLIN: Okay. This data is collected because certain accommodations need to be made in service delivery for this group.
The need for adaptations and accommodations for persons with disabilities are of great importance, creating accessibility in both the physical and the communication environment.
I would also like to say that the ADA obligates that certain adaptations and accommodations be made. This is a civil rights perspective as well. Thank you.
DR. CLINTON: Thank you. I encourage you to submit that in writing.
MR. SHEARER: I am David Shearer with the Alabama Office of Disabilities and Health, located at the University of Alabama at Birmingham.
I would like to just simply make a quick question. First, to commend the Secretary and the Assistant Secretary of Health for their support of including a chapter for individuals with a disability.
I would also like to comment that as a select population we have noticed that in goals one and two, that the people with disabilities are not identified as a select population.
I would like to suggest and request that people with disabilities be included as one of the select populations to be tracked in the goal statements and throughout the entire publication of Healthy People 2010.
Finally, I would just like to ask the committee to heed the advice and recommendations from the countless e-mails and faxes that will come from the disability population. Thank you.
DR. CLINTON: Thank you.
MR. STOKES: Good morning. My name is Billy Stokes. I am director of a research project on secondary conditions with adolescents with mobility problems that is funded through CDC at Civitan International Research Center at the University of Alabama, Birmingham.
I would also like to applaud the public hearing and say thanks for giving people an opportunity. I am not sure what we need to do in the future to be able to reach out and get more consumers involved in making public comment.
I am somewhat surprised that the room is not filled this morning with consumer advocates from all disability groups.
My comments primarily are, one, to echo some of the comments that have already been said, that we think it makes a lot of sense, given the extensive population of people with disabilities throughout the country, representing 51 million people, that they should be included as a select priority within this effort.
Secondly, in looking at the objectives and so forth and related to the research I have been doing, I am not seeing any objectives relating to the health status of care givers of people with disabilities nor people that are elderly.
What our research is finding is that the majority of care givers for people with disabilities and the elderly are, in fact, family members, and that those family members suffer and are at considerable risk. Their health status is at considerable risk as care givers.
I would also like to echo that we make considerable effort in the future to try to and incorporate the objectives for people with disabilities across, and integrate them into other objectives throughout the book, throughout the plan, particularly when it relates to items like nutrition and physical fitness and so forth. These issues are of considerable importance. I think that is sufficient. Thank you.
DR. CLINTON: Thank you. Other commentary on disability and secondary conditions?
If not, we will proceed to focus area 20, which is heart disease and stroke. Reva Lawrence represents NIH in this area.
Continuing on, focus area 21 is HIV. Jerry Shirah and Michael Kaiser from HRS, Jerry Shirah from CDC, are here to represent this focus group. HIV?
HIV reporting is probably one of the more controversial issues in the field at the moment. Should you or your colleagues or others you know have specific comments on that topic, we encourage you to submit them.
Focus area 22 is on immunization and infectious disease, Chris Benjamin and Nicole Smith, both from CDC, are here to focus on this issue.
Recall, immunizations, both childhood and adult, are one of the racial disparity topics. There are some graphs in the back that highlight particularly the striking difference in adult immunization.
Focus area 23, then, mental health and mental disorders. Wendy Davis from our substance abuse and mental health administration represents us.
MS. STREETT: Can I go if no one else is?
DR. CLINTON: You certainly may.
MS. STREETT: Betty Streett again, regional and mental health director of substance abuse programs.
One of the things that we are finding in mental health and in substance abuse treatment, and I didn’t notice it addressed anywhere in the big yellow book, and I don’t know how it could be addressed, but it may be something that we need to think about, is the growing common diagnosing and treating of individuals by themselves, in terms of use of herbal preparations.
I notice there is one big Prozac and St. John’s Wort study going on, but you walk in WalMart and you have got Kava and you have got St. John’s Wort and you have got a number of things that people are using.
In many cases, they are using them in some strange combinations. There are some things that are useful; there are some things that are not.
I think that if we don’t notice that this is what is happening in the public, that we will miss that boat. Thanks.
DR. CLINTON: Thank you. Please sign up at the back. Other comments on mental health and mental disorders?
Focus area 24 is on respiratory diseases.
Focus area 25 is on sexually transmitted diseases.
Focus area 26 is on substance abuse.
There being no comment, I am going to close the public commentary thing and let me make some comments.
I am frankly surprised by two things. Number one, the small number of people who are here today and the limited number of comments.
The comments may be that the authors got things just about right. I am not sure of that yet, but that could be the case.
I think all of us are beginning to wonder, since we call this public comment, whether we really have the public here and whether we reached out far enough.
May I have a show of hands of those who learned of this meeting and yesterday’s activities because you received something in the mail directly from the Federal Government. Okay, that is a small number.
How many of you found the information about this meeting on the Internet? I talked with one individual about that this morning about that, but it seems to be pretty small.
Friends and families and professional colleagues? So, word of mouth seems to be more powerful. Was that through friends and families and colleagues through mail? Did you get it by mail because an organization sent it to you, or you were just talking about it, just word of mouth.
It looks like the largest group heard it by word of mouth. We didn’t have anything in the newspapers about that. It makes me wonder whether we might have done that.
How many of you say that you are part of a health organization, broadly defined? So, we have mainly health professionals here.
Our mailing, despite the fact that it is measured in thousands, didn’t seem to precipitate very much.
I would welcome any comment from any of you about how we ought to expand knowledge of these events and the Healthy People movement or whether we are about right. Is it time to engage the person on the street or are we premature for that?
MS. SHERVINGTON: My name is Denise Shervington. I am not surprised that you don’t have more participation except for health professionals.
I think this is a culture in which the consumer has not yet understood how to take full responsibility for their health. Probably the challenge is how we are going to do that.
It is still, you seek medical care and that is what health is. So, to be empowered enough to feel that their health is valuable enough to participate in a process that is going to help to create a culture of wellness, I think, is two or three generations ahead.
DR. CLINTON: We won’t get there until 2050 or so, then.
MS. SMITH: I am Joan Smith. I am the regional administrator for the office of public health, region I, which is the region I am in.
I agree with my colleague, Dr. Shervington. I also do believe that we who receive information about meetings such as this decide that there are certain people who would not understand and would not attend. Therefore, we do not invite them.
We do not include in any media that these people would have access to information about a meeting such as this.
The consumer very often does not read the little writing in the newspaper. The consumer does look at the television. The consumer does go to church.
We keep talking about including the faith community. I am a member of a large church. That church never got any communication about this meeting.
There are large organizations that represent the faith community. I think that if we really want to get to consumers -- personally, I received information not from my agency but from somebody else about this meeting.
I guess what my concern is, how are we getting the information out such that we might attract the consumer to this meeting.
I think consumers do want to have some input at some level about their health. Certainly they do need to be educated about what all this means. Some of it is even too technical for those of us who call ourselves health professionals.
At any rate, we do need to at least get the invitation someplace where they might have access to it.
DR. CLINTON: Good comments. Thank you very much.
MS. GAUTHE: Hi. I am Sharon Gauthe from Region III Office of Public Health. The meetings that I attend with the community involved are always after 5:00. The people are working. They are just not available during the day.
DR. CLINTON: Thank you. Very good point.
MS. BUGGAGE: I am Lynn Buggage from the Office of Public Health, Breast and Cervical Cancer program. Your comments, I think, Dr. Jarrett, are very much on target, that we probably do need to pursue avenues of advertising that are standard for public policy changes.
I know in this area it is standard to advertise in the newspaper and to make announcements to community organizations that you are interested in hearing from.
My recommendation would be that you use the standard practices for public policy changes.
DR. CLINTON: Good advice.
MS. REED: Good morning. I am Judy Reed with the Office of Public Health. This is in response to a question that you mentioned, is it time to involve the public.
I feel that the sooner we involve those people that we are targeting to provide services to is the sooner that we will get input in those communities.
People know what they need. They may need some guidance in how to address those needs, but if we decide what we think they need, we may miss the boat completely. Yes, the public needs to be involved in these offerings.
DR. CLINTON: Thank you. All of you are aware that there are two other concurrent sessions going on. I am not sure of the pace that they are moving today. One is on this floor and one is on the second floor.
I invite you to follow those at this time, and I greatly appreciate your taking the time to make these comments, and we look forward to others that may come in either by mail or through the Internet. Thank you very much. [Whereupon, at 9:12 a.m., the session was adjourned.]