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Federal Document Clearing House
Congressional Testimony
March 02, 2000
SECTION: CAPITOL HILL HEARING TESTIMONY
LENGTH: 4320 words
HEADLINE:
TESTIMONY March 02, 2000 CHRISTOPHER GRACE, MD ASSOCIATE PROFESSOR OF MEDICINE
UNIVERSITY OF VERMONT SENATE HEALTH, EDUCATION, LABOR &
PENSIONS AIDS FUNDING
BODY:
Christopher Grace, MD
Associate Professor of Medicine and Director of Comprehensive Care Clinics
Department of Internal Medicine, Division of Infectious Disease University of
Vermont College of Medicine Burlington, Vermont March 2, 2000 1. Introduction I
am an infectious disease specialist with the University of Vermont College of
Medicine. I have been providing care to people with human immunodeficiency virus
(HIV) infection in Vermont since 1987. I am here to testify in support for the
re- authorization of the Ryan White CARE Act and to outline how CARE Act funding
has helped overcome many barriers to providing HIV care to ultimately improve
the health of people living with HIV in Vermont. Grant support to our program
from the Ryan White CARE Act began in 1994. We were fortunate to receive
funding, initially from the Special Projects of National Significance (SPNS) as
well as Title 11 and most recently from Title 111. The HIV /AIDS early
intervention funding through Title III has allowed my colleagues and me the
ability to provide care to persons living with HIV and AIDS throughout the state
of Vermont. As of early 2000, Title III of the CARE Act provides direct federal
grants to 197 community-based and public health centers in 43 states, the
District of Columbia, and Puerto Rico. The goal is to provide comprehensive
early intervention HIV/AIDS health care to historically under-served
communities, families, and individuals living with HIV disease in urban and
rural areas. The Title III program is intended to provide HIV care to hard-to-
reach individuals and geographically isolated communities who have HIV care
needs. Over half of Title III providers are located in rural and geographically
isolated communities. Title III plays a critical role in efforts to increase the
early diagnosis and treatment of HIV disease within the African American and
Latino communities. In 1998 Title III served over 96,000 people living with HIV
disease. The Title III funding in Vermont supported the development of three new
HIV specialty clinics and continuation of the previously established clinic at
the University of Vermont. The four clinic program is known as the Vermont
Comprehensive Care Clinics (CCC). Without this critical funding, clinical care
could not have been provided and I believe people with HIV in Vermont would have
suffered and died. 2. The Increasing HIV epidemic in rural America The AIDS
epidemic has traditionally been considered a phenomenon of large metropolitan
areas. The epidemic however has crept insidiously into all rural areas of the
United States. More recently the spread of HIV and the growth of the epidemic
has been more rapid in rural areas of the United States. This increase is
related not only to patients infected and diagnosed in rural areas but also to
migration of HIV infected persons from urban to rural settings. (EF Fordyce,
Statistical Bulletin 1997). This increase in the rural HIV epidemic has been
associated with a shift of the affected populations. Rural areas are seeing an
increasing number of infected women and minorities, higher rates of heterosexual
and injection drug related HIV transmission, and more people crippled by
poverty, psychiatric illness, and alcohol and crack cocaine dependency. Patient
history: "Jack" is a 31 year old man who presented to the clinic a year ago with
newly diagnosed HIV. He was fatigued and scared of HIV, scared of dying, scared
that someone in his small town or immediate family would find out his HIV
status, and scared that he would not see two young children grow up. He was
unemployed, uninsured and was barely , existing day to day. He was anxious,
depressed and at times suicidal. His CD 4 count was 200 cells/mm and his viral
load was 40, 000 copies. His difficulties with poor memory, inattention and poor
concentration, and social inactivity were found attributable to borderline
mental retardation after evaluation at the CCC. He was begun on highly active
anti- retroviral therapy (HAART), received disability, and supported by his
clinic team. His energy has improved His CD 4 count is now up to 600 cells/MM.
His HIV is fully suppressed He is beginning to think he will see his children
grow up. He remains terrified about losing his confidentiality. He is no,",
living with HIV rather than slowly dying from it as he was a year ago before
coming to the clinic. The rural psychosocial profile of HIV infected people has
been studied by Timothy Heckman, Ph.D. (Journal of Rural Health, 1998) and
succinctly summarized as follows: Compared with their urban counterparts, rural
people with HIV reported a significantly lower satisfaction with life, lower
perceptions of social support from family members and friends, reduced access to
medical and mental health care, elevated levels of loneliness, more community
stigma, heightened fear that their HIV status would be learned by others, and
more maladaptive coping strategies." 3. Barriers to HIV care in rural America
HIV infection is a complex medical, psychosocial, and economic illness. Numerous
barriers impede the provision of care to persons with this illness in rural
areas. Because of these barriers, patients may not seek health care or may be
forced to travel long distances for expert care. Delays in seeking care could
increase the risk of complications, hospitalizations, and death. Barriers to
accessing HIV health care include: a) Complexities of HIV care. This complexity
necessitates expertise in the delivery of medical and psychosocial care. The
median survival time for people receiving care for HIV/AIDS is increased if an
HIV expert provides the care (MM Kitahata, NEJM 1996). Compliance with care is
associated with patient perception of physician knowledge. Because of limited
HIV expertise in rural areas of the United States, people living with HIV in
these areas may not have access to state of the art health care that has had
such a huge success in decreasing mortality and improving quality of life in
metropolitan areas. The provision of care is labor intensive and requires a team
of dedicated health providers who understand not only the viral illness but also
the human struggle involved in battling this infection. b) Long travel
distances: In Vermont, most people living in rural areas must travel
considerable distances to access HIV health care. Sometimes this travel is
impossible due to lack of transportation. long winters with icy roads. or
patients being too ill or weak to make the long trip to their doctor or
counselor. c) Confidentiality: Discrimination against people with HIV/AIDS is
still rampant. Many patients remain afraid to tell their families, friends,
employers, insurance companies, and even their own local doctors about their
infection. This fear is compounded in small rural communities due to their close
knit. The keystone of any health care service model in rural America is
confidentiality. d) Limited health insurance: The populations most affected by
HIV are young adults. The unemployment rate is high and most do not have
adequate medical insurance. Fear of high medical costs keep people from
accessing and receiving health care. e) Limited psychiatric and substance abuse
care. The HIV epidemic is changing. The number of patients accessing HIV care
who also need psychiatric and drug and alcohol counseling is increasing rapidly.
The resources available to supply this counseling are limited. Limited mass
transportation: Many patients do not have automobiles nor can they afford the
fuel expenses to travel 100 to 150 miles for their HIV care. In most rural
areas, public transportation remains very limited or unaffordable. 7. HIV in
Vermont Vermont is one of the most rural states in the nation. It has a
population of 586,000 persons living within 9,615 square miles in northern New
England. The Green Mountains bisect the state north to south and the main
interstate runs east to west, roughly dividing the state into quadrants. The
long winters, mountainous terrain, limited highway system, and minimal public
transportation makes access to HIV care difficult. The first Vermont case of
AIDS was reported in 1982. As of December 1999, there have been 355 reported
cases of AIDS in the state. The Vermont Department of Health estimates that
there are between 335 - 430 people with HIV living in Vermont. Prior to the
development of the Ryan White CARE Act supported Comprehensive Care Clinic
program, HIV specialty care was very limited. The only regional HIV clinics were
located at the University of Vermont in Burlington in the northwestern quadrant
of the state and at the Dartmouth Hitchcock Medical Center in Lebanon, New
Hampshire. Patients were either not accessing care at all or traveling long
distances (sometimes 4-6 hours round trip) for their care. See Figure 1. 8. The
Vermont Model for HIV Service Delivery The Vermont model of HIV care reduces
travel time to health care for the patient. brings state of the art HIV medical
care to the patient in his or her own community, emphasizes the personal
relationship between the provider and the patient, and is centered on assurance
of confidentiality (CJ Grace, AIDS patient Care and STD, 1999). With Ryan White
CARE Act funding three clinics have been established in Vermont (Rutland in
8/94, Brattleboro in 10/95 and St. Johnsbury in 10/96). These clinics, in
collaboration with the established clinic in Burlington, provide specialty HIV
care in each quadrant of the state. See Figure 2. The clinics are housed in
regional community hospitals. An HIV trained nurse practitioner and social
worker staff each clinic. HIV physicians and a nutritionist from the University
of Vermont travel monthly to each of the three clinics outside of the Burlington
area in addition to providing care in Burlington. Patients now travel much
shorter distances for their HIV care because the specialist is traveling to
them. The travel time for the HIV specialist averages 2- 3 hours each way. The
continuum of comprehensive care provided includes state of the art
anti-retroviral therapy, immunizations, infection prophylaxis, diagnosis and
management of infections and psychosocial case management. Medical insurance
counseling, psychosocial support for the affected families, referral for drug,
alcohol and psychiatric counseling, transmission risk reduction education, and
anonymous HIV testing are also provided. Since the initial SPNS funding in
October 1994, 426 patients have received care. There are currently 276 patients
actively being cared for. The patient population underscores many of the
barriers encountered by patients and providers alike. Despite the fact that the
population of Vermont contains only 2-3 % percent communities of color. 15 % of
the clinic population is African American, Hispanic, Asian or Native American.
Women comprise 18 % of the patients served which is higher than the national
average. The majority of patients have presented to the clinic program with
advanced stages of HIV infection. More than 50 % of the patients have AIDS upon
their initial visit. More than 70 % have CD 4 counts less than 500 cells/mm'
when first seen. Twenty five percent of the patients are co-infected with
hepatitis C virus further complicating their care. Fifty percent of the patients
are unemployed including 63 % from the three most rural clinics. The majority
has either no insurance or only Medicaid or Medicare. Most of the current
patients are impoverished with 36 % below the 1999 Federal poverty guideline and
another 20 % below 200% of the guideline. We estimate that injection drug use
has contributed, directly or indirectly, to greater than 40 % of the HIV
infection in the state. More than 60 % of the patients were most likely infected
out of state and migrated to Vermont, many not knowing they were already HIV
infected. 9. Collaboration Collaboration with other CARE act titles is vital to
the ongoing health of the people with HIV living in Vermont and other rural
areas. Support for the CCC program comes from Title III and 11. Money for AIDS
medications comes from Title 11 ADAP (AIDS Drugs Assistance
Program). Title 11 funds also support regional AIDS Service Organizations that
work collaboratively with the medical providers for community education and
patient support. The Comprehensive Care Clinics, along with all Title 11
organizations, are on the board of the Vermont HlV/AIDS Care Consortium. The
Consortium is a statewide planning body for Ryan White CARE Act and State of
Vermont AIDS related funds. The Comprehensive Care Clinic team works with the
Vermont Department of Health for provider education through funds from the Ryan
White CARE Act New England AIDS Education and Training Center. 10. Successes as
a result of CARF, Act funding in Vermont Patients coming to these clinics now
have the opportunity to receive state of the art medical care that similar
patients may receive in metropolitan areas. Each patient has a personal
relationship with the clinic team members. All patients receive full case
management, nutritional counseling, dental care, and other subspecialty referral
as needed. Through collaborative arrangements, substance abuse treatment and
mental health services can be provided Without support from the Ryan White CARE
Act, the quality HIV care provided in Vermont would not be possible. The Vermont
CCC program has reduced travel time to HIV care for patients throughout the
state. Prior to the opening of the three most rural clinics, 87 % of the
patients from the areas of the state without previous specialty care were
traveling longer than 30 minutes and 64 % greater than one hour for HIV care.
After opening these three rural clinics, 5 1 % were traveling less than 30
minutes and 8 7 % less than one hour. This reduction in travel time has removed
one of the major barriers to care in this rural state. Patients who have
received care in the CCC program have had an improvement in their health. Death
rates over the past three years have fallen. The number of patients with CD 4
counts less than 200 cel IS/MM3 has decreased while the number of patients with
> 500 CD4 cel IS/MM3 has increased. Patients receiving care in one of the
three most rural clinics (number of patients = 133) have had a decrease in their
unemployment rate from 63) % to 53 %. Ryan White CARE Act funding has removed
many barriers to HIV care in this rural state. It has allowed patients to
receive state of the art health care in their own community in a confidential,
supportive, and secure setting. Patients' health and well being have
significantly improved. Patient history: "Helen " is a 60 year old mother of
three and grandmother of five. She has been married for 30years. When she first
presented to the CCC she had been sick for six months with fever and weight
loss. Her primary care providers thought she had leukemia. By the time she was
diagnosed with AIDS she had become a withered, debilitated shadow of her former
self and was facing death in the near future. Her CD 4 count was zero, viral
load > 500, 000 copies and she had disseminated infection with Mycobacterium
avium. Because of her infection her husband was tested and found to be HIV
positive. They live in a rural town of 2000 people located 2 1/2 hours from the
University hospital. Knowledge of her HIV infection would devastate her family
and she feared ostracism from her community. One of the CARE Act supported
Comprehensive Care Clinics was located only 30 minutes from her home. There she
was treated with HAART and antibiotics for her Mycobacterium infection. The
clinic team counseled her and her husband through their illnesses. She and her
husband elected to get their medications near the clinic and not risk getting
any health care in their own town. Within eight months Helen had regained her
weight and strength and returned to work Now that she looks healthy again, no
one in her town is asking, "what is wrong Helen? " a question she was afraid to
answer. The remarkable success of the Comprehensive Care Clinic program would
not have been possible without CARE Act funding. Speaking for my colleagues and
the patients we care for I thank you for your ongoing support of the Ryan White
CARE Act.
LOAD-DATE: March 7, 2000
