Pediatric
Rheumatology Online Journal
Vol. 1, No.
1 (14-19) 2003
COMMENTARY: PEDIATRIC RHEUMATOLOGY IN TIMES OF
CRISIS
Ruben
J.Cuttica, MD
Head
Rheumatology Section
Hospital de Pediatria Pedro de Elizalde
Av.Montes
de Oca 40
1270
-
e-mail:
elizalde_reumato@buenosaires.gov.ar
http//www.elizalde.gov.ar
http//www.reumapediatrico.org.ar
At
the end of 2001,
MEDICAL
INSURANCE
Since the unemployment rate reached more than 25%,
many people were no longer eligible for the medical service or insurance
previously provided by their trade unions. People were too poor to afford
private medical insurance that would help pay for these medical services.
Eventually more than 50% percent of the population fell into poverty with
difficulty even getting enough food. Many poor families could no longer afford
to pay the bus fares to their scheduled visits in public hospitals.
Surprisingly, a different patient population had begun to replace them and
overcrowd the public hospital service: the newly impoverished and unemployed
middle class.
HOSPITAL
CARE
My hospital, Hospital de Pediatrma Pedro de Elizalde,
is one of the public pediatric hospitals of
Remarkably, we began to see a change in the types of
rheumatic diseases and syndromes we were seeing. In particular, the increase in
pain amplification syndromes was extraordinary including fibromyalgia and
erythromelalgia. These children usually belonged to ex-middle class families,
and their pain was associated with severe emotional distress. Tension and
depression were rife among family members, and pain, perhaps as an expression
of the societal and family crisis, was the most outstanding feature. We began
to work very closely with the psychiatrists and psychologists at our hospital,
and with the Adolescent Unit staff. They referred to our Section all patients
that consulted them because of emotional symptoms and at the same time
complained of severe joint and/or muscle pain.
Unfortunately the human, medical, and financial
resources of the hospital were not increased to keep up with the increased
number of patients, overcrowded consulting rooms, and an inability to schedule
patients to regular appointments. As indigent families often did not have
enough money for transportation on the day of any scheduled appointment,
families could not reliably travel to our hospital on any appointed day. So
since the crisis began, children could not be seen at regularly scheduled
visits for our rheumatology clinic. We have followed our patients without
scheduled visits on a first come, first serve basis. This change often has led
to crowded, congested waiting areas, long waits to see the physician, greater
difficulty coordinating medical care, and increased stress for everyone.
Due
to financial constraints, physicians have had to limit the use of laboratory
tests or other studies. We still can order CBC's, liver function tests and
urinalyses as routine tests for the initial diagnosis and later monitoring of
disease activity and drug tolerability. The expensive serologic tests ANA, DNA,
C3 and C4 have been restricted to severe cases, and other immunologic tests are
only rarely ordered. This lack of available testing means that we must depend
on the old-fashioned thorough history and physical exam as the most important
tools for successful diagnosis and treatment.
OUTREACH
As a major pediatric referral center, we ordinarily
are referred patients from all over
DRUG
COSTS AND MEDICAL CARE
Many parents of our patients have put off or stopped
their child's medical care or due to the cost of drugs and travel expenses to
and from hospital. To better understand this problem, we polled the parents of
our patients in August 2002. One hundred families were interviewed during a
follow up visit after giving verbal informed consent. We found 62% of the
parents had a regular job, 15% were under employed and 23% unemployed. The cost
of drug treatment for this group was 170
We
decided to review the costs of drugs used in our Pediatric Rheumatology clinic
compared with weekly family income before and after the peso devaluation. We
calculated the costs of one day of treatment according to the usual doses of
all the drugs (including biologics) for a 20 Kg body weight patient. We looked
at two time points, December 2001 (before devaluation with an exchange rate 1:1
between US$ and Argentine peso) and November 2002 after one year of devaluation
(see next table).
|
COST
OF DRUGS |
|||
|
|
December
2001 |
November
2002 |
%
of change |
|
Cost
in pesos |
$91.- |
$
151.79.- |
+67.08% |
|
Cost
in US$ |
U$91.- |
U$S
43.36.- |
-52.36% |
|
FAMILY
INCOME |
|||
|
Salary
in pesos |
300.- |
300.- |
No
change |
|
Salary
in US$ |
300.- |
85.71 |
-71.4% |
|
|
|
|
|
According to these data, the cost of drugs in pesos
increased almost 70%, but the family income did not change in pesos. This
explains why many of our patients cannot afford arthritis treatment for their
child.
Since most of our parents and families now could not
afford the anti-rheumatic drugs for their children, social services in the
provinces and counties provided the medications to some of our patients. Other
families were referred for help from nongovernmental agencies such as Red
Solidaria (Solidarity Net). Since methotrexate is not an expensive drug,
families can afford it and we can use it. However, steroids are very expensive
and we must admit some children to the hospital to give them periodic IV pulse
therapy instead of oral steroids that are more expensive. Most of the patients
that were receiving anti-TNF treatment continued it irregularly and some of
them discontinued treatment.
Last August, government decreed that prescriptions
must be generic. This edict led to a serious controversy because the generic
drugs are not always the most effective because of bioequivalence issues. Many
patients that changed to generic drugs had their disease become more active, or
had more adverse events, making us suspect efficacy and safety problems.
Fortunately, clinical drug trials have allowed some patients to be treated with
new and high quality drugs with very good medical control for safety and
efficacy.
PHYSICAL
THERAPY/ FUNCTIONAL OUTCOME SCALES
The need for physical therapy has increased because
of the many new patients with arthritis and pain amplification syndromes. The
physical therapists decided to group children together and work with a very
intensive exercise program; the competition keeps the children very active and
engaged.
Scales such as CHAQ, and CAPFUN, a functional ability
scale we presented at the Park City IV meeting, show changes in disease status.
We have used the data from these scales, to modify the drug and/or physical
therapy treatments with very good results. Both scales can be performed in a
short time and at no cost. We now rely on clinical findings more than ever.
Perhaps this is not a complete evaluation for evidence based medicine, but in
our time of crisis there are few options.
CONCLUSIONS
Economic crisis and social displacement lead to
decreased medical resources, impaired coordination of patient care, and an
increased incidence of pain amplification syndromes.
In difficult times, CBC, liver function tests, and
urinalysis are often the only tests available for use in diagnosis and the
monitoring of disease activity and drug therapy.
Immunologic tests have to be restricted to a minimum
and clinical diagnostic criteria used for diagnosis.
Physical
therapy is an important tool both for improving functional ability and pain
relief. The drug of choice for JIA
under our conditions is methotrexate- it is cheaper than other disease
modifying drugs. Clinical drug
trials under ethical conditions have been very helpful in times of economic
crisis, allowing us to provide an excellent treatment with close monitoring of
patient status.
CHAQ and CAPFUN have become very important tools for
evaluation of our patients in long term follow-up as they are inexpensive and
correlate very well with the clinical state of the patients. We remain frustrated that many children
are no longer receiving needed treatment for their rheumatic conditions. We
also are only to aware that we have very powerful drugs that we can not even
consider offering them. The situation is often very difficult for the patients
and their families. Our hands, eyes and ears have become our most powerful
tools for diagnosis and follow- up. Fortunately, our love and compassion for
children that are suffering, not only from their disease, but also the
difficulties of an undeserved social crisis, have proven to have great
therapeutic value.
Acknowledgements
: I want to thanks Dr. Flavio Devoto for his help about pharmaco-economics and
Dr.Mansur Azzam for reviewing the manuscript.