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in the diagnosis, treatment, and, ultimately, prevention of theses diseases. Support for basic research has led to improved understanding of skin disease and this knowledge is being applied to reduce the enormous human and economic burdens imposed by chronic, debilitating diseases.
To support diversified research thrusts, NIAMS funds research centers through the Skin Diseases Research Core Centers. Two skin disease research core centers were established in 1988; one at Case Western University, the other at New York University
A skin disease research center grant provides funds for integrating, coordinating and fostering the interdisciplinary cooperation of a group of established investigators conducting-research programs vi high quality that relate to a common theme in skin disease. These centers bring together related facilities within a grantee insti. tution to pursue interdisciplinary research on skin diseases. By providing more accessible resources, these special grants are expected to ensure greater productivity at a given grantee institution. This Coalition encourages expansion of the skin centers program and, in particular, recommends that the full complement of six skin diseases research core centers be funded.
We appreciate the funding of the two core centers and the initial funding for the new intramural program for skin. These programs are an excellent beginning to the end of skin disease but continued funding is needed to maintain the high quality of science currently underway.
We strongly feel that skin disease research holds the key to unlocking many of the mysteries surrounding chronic, disfiguring and life-threatening skin diseases. The future of skin disease research holds great promise and discoveries are right around the corner due to improved technology and application of knowledge gleaned from other research disciplines. Research is certain to lead to further breakthroughs in the diagnosis and treatment of these diseases and offers hope for even better treatments. NIAMS research is making a disserenæe. I would like to review some of the recent advancements:
NIAMS research uncovered the basic molecular mechanisms for two very serious skin diseases, epidermolysis bullosa and-pemphigus. NIAMS research has discovered the mechanism by which estrogen prevents bone loss and the discovery of new laboratory markers for disease of the brain in patients with Lupus (SLE). NIH research is a healthy investment for the future. Recently, NIAMS intramural scientists conducted a long-term clinical trial which convincingly demonstrated that combined drug treatments will sustain life-supporting kidney function in systemic lupus patients. This single health care advance has been translated to an estimated potential one year savings of $69.81 million. Along with the significant cost savings, this one advance has had a considerable impact on improvement in quality of life and reduction in premature mortality.
The NIAMS Coalition, representing 43 organizations, including the Coalition of Patient Advocates for Skin Disease Research, respectfully urges Congress to increase the fiscal year 1992 NIAMS budget by $47 million. This would effectively in. crease funding from 27 percent to 33 percent approved grants, train additional researchers, sor a total of 328, support urgently needed clinical trials, fund 4 additional skin research centers, for a total of 6, and increase the intramural research program to $21.2 million.
Progress is being made, but to meet the continuing challenge of ongoing research and technology transfer to patients and their families, it is essential that adequate resources and well-trained scientists be available to focus on skin disorders.
We, as a Coalition, support this proposed increase of $47 million as we believe the increase will, in the long-term, have significant, positive health benefits for the millions of Americans who are affected by skin diseases.
As you will hear today from representatives of the Coalition, the NIAMS is essential to the future of the hundreds of thousands of patients who are amicted with severe skin diseases.
Here with us today are 2 representatives of the member organizations to tell you their concerns about the future of NIAMS and what it means to them. The following organizations are represented here today: National Congenital Port Wine Stain Foundation and Eczema Association for Science & Education.
All of the member organizations of the Coalition join me in thanking this Committee and Congress for the support of skin disease research. Thank you. STATEMENT OF LADONNA G. WILLIAMS, SPECIAL REPRESENTATIVE
OF THE ECZEMA ASSOCIATION Senator BURDICK. The next witness will be Ms. LaDonna Williams of the Eczema Association for Science and Education.
Ms. WILLIAMS. Good afternoon. I am LaDonna Williams from the Eczema Association.
What do you think of when you hear the word "eczema”? If you imagine, as most people do, a person with very dry, flaky skin, you are seeing only a very small picture of this disease. This condition, also called atopic dermatitis, is much more serious than is usually thought. It is a condition with intolerable itchiness, causing uncontrollable scratching that leads to redness, oozing, bloody sores, and painful cracking of the skin. And while it is not life threatening, it can be socially terminal, emotionally horrifying, physically frustrating, and mentally overwhelming.
I have three children, two of whom suffer from full-body eczema. My 14-year-old daughter has faced ridicule, horror, and emotional pain most of her life due to this condition. She dearly wants to be a cheerleader next year, but is embarrassed because her legs appear dry and red and broken out. When she was 6 years old she avoided mirrors; she thought monsters looked at her. It was her own reflection.
With an unsightly skin disease such as eczema, you face fear and ridicule in normal carefree situations. My daughter is an eager, intelligent girl who has determinedly made her way. She is in the talented and gifted program in the Newport News city schools, and she participates in activities despite the constant teasing and isolation.
She wants to go to law school one day, and I ask myself, will employees or law firms overlook her appearance? Will she ever be able to use the education she wants?
My 5-year-old is a son in kindergarten. His condition has affected both his manual dexterity and his fine motor skill development. His fingers—red, swollen, sore, and cracked by eczema-cannot easily grasp scissors, crayons or pencils. The simplest of tasks becomes a painful exercise.
Eczema is a disease that not only affects the individual sufferers, but also the entire family. Decisions on where you live, where you go on vacation, what clothes you wear, are all based on how they will affect the child or the patient with eczema.
Because the itching is a 24-hour-a-day ordeal, sleepless nights are common, and I can tell you, when my 5-year-old son is up, the whole family is up.
I am here today to represent the Eczema Association, which has joined the NIAMS coalition. We are here as advocates for sufferers of all skin diseases. We are very thankful for all the prior funding, which has allowed researchers to learn more about the largest organ of the body, the skin. However, with your help through increased funding, much more can be learned about its functions and its activities.
As a parent, I am willing to do anything to keep my children from suffering. I would allow them to participate in research projects in order to help them. In other words, I will put up the patients if you will put up the funding for research.
I do have a picture here I would like to present you to show you an example of how extreme eczema can be.
(The statement follows:) STATEMENT OP LADONNA G. WILLIAMS, SPECIAL REPRESENTATIVE OF THE ECZEMA
ASSOCIATION What do you think of when you hear the word “eczema?" If you imagine, as most people do, a person with very dry, flaky skin, you're only seeing a very small picture of this disease. This condition, also called “atopic dermatitis” is much more serious than what is usually thought. Imagine for a moment, a condition with intolerable itchiness causing uncontrollable scratching that leads to redness, oozing and bloody sores, painful cracking of the skin-and you will begin to see the reality of the life of an eczema victim. The constant cycle of itchiness, scratching, pain, and bleeding is a vicious one, which, while not lise-threatening, can be socially terminal, emotionally horrifying, physically frustrating, and mentally overwhelming.
I have three children, two of whom susler from full-body eczema. My fourteenyear-old daughter has faced ridicule, horror, and emotional pain most of her life due to this condition. She dearly wants to be a cheerleader next year, but is embarrassed because her legs appear dry, red, and broken out. When she was six years old, she avoided mirrors-she thought “monsters" looked back at her-her own reflection. With an unsightly skin disease such as eczema, you fac fear and ridicule in normally carefree situations. Summer normally means fun and frolicking at the neighborhood pool, but when people look at your children and immediately start pulling their own kids out of the pool, or making comments about the parents letting kids with “contagious” diseases in the pool, the bright day is darkened by pain. My daughter is an eager, intelligent girl who has determinedly made her way, getting in the gifted and talented program in the city schools, participating in activities despite the constant teasing and ensuing isolation. She wants to go to law school one day. I ask myself, however, “Will employers or law firms overlook her appearance? Will she ever be able to use the education she wants?"
Eczema also takes a terrible toll on very young children. My five-year old son is now in kindergarten. His condition has assected both his manual dexterity and fine motor skills development. His fingers, red, swollen, sore and cracked by eczema, cannot easily grasp scissors, crayons and pencils. The simplest of tasks becomes a painful exercise.
Eczema is a disease that not only affects the individual sufferers, but also the entire family. Decisions on where to live, where and when to go on vacation, as all as what clothes to wear must all be based on how they will affect the eczema patient. Because the itching is a 24-hour-a-day ordeal, sleepless nights are common. When a five-year-old is up and awake all night, believe me, the rest of the family knows he's up. Eventually the toll of these sleepless nights affects everyone, and day-time productivity is distinguished for all. The family's life revolves around this suffering.
It is believed that eczema is something you grow out of, but only a lucky 30 percent are fortunate enough to clear up and stay clear. Some cases can be controlled with drugs and medical supervision. Some patients are only affected on some parts of the body. The whole disease picture is very unpredictable and varied.
Thank you for your funding to this point. This can allow researchers to learn more about skin. I am here today to represent the Eczema Association for Science and Education. We have joined the NIH Coalition. The skin is the largest organ of the body-with your help in increased funding, much can be learned about its functions and activities in order to help the sufferers of all skin diseases. As a parent, I am willing to do anything to keep my children from suffering. I would allow them to participate in research projects in order to help them. In other words, I'll put up the patients if you'll put up the money for research.
Senator BURDICK. Maybe I am stepping over the line here in asking for some medical advice, but can eczema be transmitted?
Ms. WILLIAMS. No sir; although it is thought to be by several other people. There have been times we have been at swimming pools or other social functions where parents would pull their children away, because they would say, do not get close to that child, it may be contagious. But it is not contagious.
Senator BURDICK. Thank you very much.
STATEMENT OF RICHARD LONG, WASHINGTON REPRESENTATIVE, NA
TIONAL ALOPECIARIATA FOUNDATION, ON BEHALF OF NAF AND
NATIONAL CONGENITAL PORT-WINE STAIN FOUNDATION Senator BURDICK. Our next witness will be Nancy Richwalsky of the National Congenital Port-Wine Stain Foundation.
Mr. LONG. Nancy asked me to substitute on her behalf, and we did check with staff. She has a child due almost any moment now, and she has been advised not to travel. So with your permission and my apologies for the lateness in submitting my testimony.
Senator BURDICK. Your apologies are accepted. I hope it is just as good.
Mr. LONG. That I will not guarantee. Nancy is quite eloquent.
My name is Richard Long, and I am the Washington representative of the National Alopeciariata Foundation, and today I am speaking on behalf of NAF and the National Congenital PortWine Stain Foundation.
Port-wine stain is a congenital malformation of blood vessels that presents itself from the first month of embryonic life. Most of these skin blotches appear on the face, but can occur anywhere on the body, classically being purple in color, with no defined boundaries.
There are several associated syndromes with port-wine stain, among them Sturge-Weber disease, glaucoma, mental retardation, and others which can result in enlargement and deformities of inflamed limbs.
Alopeciariata is a disease suffered by over 2.5 million people in the United States. For some it is the loss of a quarter-size patch of hair, but for others it is the loss of every hair on their bodies, including eyes and eye lashes. Alopeciariata strikes every ethnic group and age, but most often strikes children between the ages of 5 and 9.
Both diseases are more than simply cosmetic problems, Mr. Chairman. These diseases impact people psychologically, developmentally, socially, and vocationally. I am also chair of the Alopecia's Mental Health Committee, and what we are finding is that these diseases really stop people from developing and growing, and many of them end up staying inside their homes for many, many years, and fear overcomes them.
We are here today to ask, on behalf of the millions of people suffering from port-wine stain and alopecia, joining with the coalition of skin diseases to ask that you consider increased funding for the National Institute on Arthritis, Musculoskeletal and Skin Diseases, NIAMS, with an increase of $47 million to support clinical trials, four additional research centers, additional training of researchers, and increased intramural research program, so that more breakthroughs may occur for both these diseases and for the 60 million others who are estimated suffering from skin-related dysfunctions.
[The statement follows:
STATEMENT OF NANCY RICHWALSKY, COALITION REPRESENTATIVE ON BEHALF OF THE
NATIONAL CONGENITAL PORT-WINE STAIN FOUNDATION (NCP-WSF) Mr. Chairman and members of the subcommittee, on behalf of the National Congenital Port-Wine Stain Foundation (NCP-WSF.) I would like to thank the committee for the increases in funding during this last year and for including this written record as part of its' testimony.
The port-wine stain, or nevus Nammeus, is a congenital malformation of the blood vessels that presents from the first month of embryological life. Most appear on the face, but can occur anywhere on the body, classically being pink to purple in color, with no definite boundaries.
Each year an estimated five in one thousand children born are aMicted with the port-wine stain: five percent have associated glaucoma, mental retardation, and uncontrolled seizures due to involvement of the central nervous system which is called Sturge-Weber Syndrome. Klippel-Trenaunay-Weber another associated syndrome, involves deeper blood vessels, muscle and bone, resulting in enlargement and deformity of the involved limb. Port-wine stains tend to darken with age becoming raised and thickened adding deformity to the skin surface, leading to profuse bleeding following even minor trauma.
The millions of Americans amicted with the port-wine stain will testify to the fact that this is not just a birthmark. This is not just a cosmetic problem. This is truly an amiction that scars psychologically, developmentally, socially and vocationally. Personality development can be adversely influenæed due to the emotional trauma caused by those ignorant to the real cause of the stain. Financial burdens can be endless with the need for continuous medical follow-ups by specialists including dermatologists, ophthalmologists, and neurologists. Employment opportunities can be affected: though not legal; in this real world we all know appearance counts.
Three years ago my family became one of those affected by the port-wine stain. My son, Michael Scott, was born with a port-wine stain covering the right side of his face from the tip of his lip to the hairline. The shock of my son's physical appearance was devastating but then came the diagnosis of Sturge-Weber Syndrome. Numerous tests were performed including: ÇAT scans, glaucoma testing, retinal exams, and neurological exams. The emotional roller coaster my family has endured for the past three years has been real; visually, emotionally, and physically. Each day wondering will today be the day Michael Scott is lost to seizures or permanent mental impairment. Due to the lack of sufficient research, the outcome of my son's physical and mental development was, and still is unknown. Unfortunately only research can tell what his prognosis will be, and the millions of Americans afflicted with port-wine stain, Sturge-Weber, and Klippel-Trenaunay-Weber Syndrome.
The National Congenital Port-Wine Stain Foundation requests funding for the National Institute of Arthritis, Musculoskeletal, and Skin Diseases (NIAMs). NIAMS has increased opportunities for skin disease research, and must continue to be funded to meet the needs of this increasing patient population. Funding is needed to seek new
and successful treatment, educate th professional and patient populations, and encourage support for basic science research. We urge this committee to increase the NIAMS budget by $47 million. This support is urgently needed for: clinical trials, four additional research centers, training of additional researchers, and increasing the intramural research program $21.2 millions.
We must look to the future to protect scientific advances, and bring closer the day when the application of valuable research will end unnecessary suffering.
We thank Congress for its support of biomedical research funding. We thank you for consideration of our request and hope you will continue to make investments in science.
Senator BURDICK. Thank you. Your testimony was eloquent. We appreciate your appearance here today, and we will keep your comments in mind as we develop the budget for fiscal year 1992.
Mr. LONG. And I will inform Nancy of your wish to have her in my place.
Senator BURDICK. Is there someone here representing the American Association of Colleges of Osteopathic Medicine?