Forthepastquarterofacentury,I
have hadtheopportunitytocarefor
children and adolescents who
have serious, chronic, treatable
disease, both as a pediatric endo-
crinologist andasa medical admin-
istrator. My definition of "serious,
chronic, treatable disease" is this:
Serious - Requiring a team of
health care professionals

Chronic - Of many years dura-
tion; eg., three to a lifetime.

Treatable - Including drugs,
surgery and counseling

Prognosis - Often not cured, but
with therapy, patients look, feel,
act better and become functional
adults. Without therapy, manywill
not function, nor will they survive.

There are children in St. Louis
with serious, chronic treatable
diseases where I think the health
care system is doing a reasonable
job of meeting their needs. One ex-
ample concerns a hemophiliac
who is subject to recurrent episodes
of serious bleeding requiring fre-
quent transfusions and help from
a health team of professionals.
Now the patient's care, including
intravenous therapy, is given at
home by parents, patients and
visiting nurses. The fiscal support
includes the following: Depart-
ment of Health, Education and
Welfare - Great Plains Regional

Dise

Comprehensive Diagnostic and
Treatment Center; Missouri Crip-
pled Children's Services; Bi-State
Hemophilia Society; Missouri He-
mophilia Program; and the Illinois
State Hemophilia Program. How-
ever, the three organizations which
absorb the cost are St. Louis Uni-
versity Hospital, Cardinal Glennon
Memorial Hospital for Children/
Sisters of St. Mary, and the St. Louis
University School of Medicine.

The second group of children I
think are making progress are
those with learning disabilities.
These children are problematic in
identification, classification and
management. Their testing is very
time consuming, requiring ap-
proximately 20 hours of profes-
sional time per patient. Subse-
quent education and management
plus re-evaluation are time con-
suming also.

In this state, as part of the ter-
tiary care system, these children
whose families have limited in-
comes can be evaluated and helped
via the local school system. Fiscal
aid isprovidedthrough thestateof
Missouri Regional Center, Mis-
souri Crippled Children's Services,
Missouri Medicaid, and Knights
of Columbus. Again, absorbing the
costs are Cardinal Glennon Me-
morial and the St. Louis University

School of Medicine.

Forminganothergrouparethose
children with cancer. They need
many medications, much labora-
tory re-evaluation, a full team of
health care professionals and in
some cases, major surgery and
subsequent radiation. Generally
these children are offered treat-
ments on an ambulatory basis;
however, there need to be periods
of hospitalization occasionally.
In these cases, the fiscal support
comes from the Candlelighters,
Leukemia Society, American Can-
cer Society, Tricia Phillips Chil-
dren's Cancer Fund, Cardinal
Glennon Memorial/Sisters of St.
Mary and St. Louis University
School of Medicine.

Another bright spot concerns the
program for the mentally retarded
adults. In the city of Cape Girar-
deau there is a remarkable pro-
gram for mentally retarded adults
who are capable of working. In that
program are sheltered workshops,
supervised recreation, supervised
independent living, and transpor-
tation.Thefinancialsupportforthe
program comes from the Social
Security income of the individual
client, contributions from the
Knights of Columbus, Missouri
Department of Mental Health, and
United Way.


  These are all examples of pro-
grams which offer some financial
  support for families who are medi-
  cally indigent. Children with other
  serious, chronic, treatable dis-
  eases are not so fortunate. There
is no fiscal support for the med-
ically indigent except for the gen-
erosity of individual physicians
and individual religious orders for
the following:
  1. Children with hypothalamic
pituitary tumors
  2. Babies and children who have
  been battered
3. Teenagers and young adults
with complications of diabetes
  mellitus
  4. Children with chronic inflam-
matory disease of the bowel
5. The multiply handicapped
  6. Children with asthma
   For some, virtually no fiscal as-
sistance is available. This group
encompasses teenagers with
serious, chronic, emotional prob-
  lems.
   As we think about the homecare
of ventilator-dependent children
  and adults, let us remember that
they exemplify the problems of a
large group of children, adoles-
  cents and adultswho haveserious,
  chronic, treatable diseases, but
  nevertheless, are individuals who
can contribute to society and can
enjoy their lives. Currently, many
of these people receive less than
optimal care because of inade-
quacies in thefundingofthehealth
care system and in the health care
providers. The problem requires
additional changes such as redi-
rection of crippled children's funds
from the categorical. Third-party
payment for ambulatory care,
home care, and psychological sup-
port must be instituted. We needto
make optimal health care a na-
tionalpriorityandtoviewtheneeds
of the medically indigent as a pri-
ority as well as the needs of chil-
  dren. 0