Children with AIDS

A Cooperative Between:

Fundatia Profilaxis

Other informative rooms on this hall:

AIDS Day Care Proposal room.
Learning Resource Center Proposal room

Need

Romania “accounts for 60 percent of [juvenile HIV] cases across the European continent, largely due to communist era use of untested blood, lack of disposable syringes and poor hygiene. An official report published [in early November 1998] with US and Canadian help showed that 4,849 of 5,503 registered AIDS cases involved children. [Between 1990 and 1998,] 1,895 children and 204 adults ...died of AIDS-related illnesses.” ** We have noted that most of the children now infected were infected after the communist regime was overthrown. In 1995, there were approximately 300 children with AIDS in Timis County. Medical advances make it probable that a cure for AIDS will be discovered in their lifetime. Additionally, it is theoretically possible that their present treatment with Crixivan will cure many who undergo 7 years of treatment.

The present state of public misinformation and fear means that children with AIDS are condemned to a life of isolation caused by an odious disease. Additionally, Timis lacks assistance for children with AIDS as there are no educational or assistance programs for children and families. School principals often throw the children out of school for fear of transmitting AIDS to the other children. Communities perceive that these children are a danger and brushes them aside or, at best, pity them. Families fear that these children will infect others in the family unit. Thus, they often abandon them in orphanages which are infamous internationally for their negligent care. The children reared by the state typically have deficits in educational and emotional development. This means that many of these children will likely be cured and enter adulthood maladjusted and unprepared. This greatly decreases the likelihood that they will find meaningful employment or a healthy integration in the society. More likely, they will turn to crime, drugs, prostitution, and panhandling. Maldevelopment in their formative years will haunt them until they receive their glorified HIV-free bodies.

Causes and Aggravating Factors

Sociologically speaking, the foundation of the problem is the lack of education of parents and communities regarding the risks of AIDS. The unique nature of the disease, fear, the lack of social acceptance, and the psychological trauma of seeing the gradual deterioration of the health of their children place the parents in a tragic situation. Their old friends and acquaintances can no longer relate to their problems or assist them effectively.

The predominant strain of HIV in Romania is type F, which normally means a longer life after diagnosis of 8-10 years. However, these factors above cause a child’s post-diagnostic life expectancy is under 5 years at V.Babes Clinical Hospital. The cause of this discrepancy is simple.

1. Many children are not diagnosed HIV-positive until they are in the later stages of AIDS, when antiretroviral treatment is ineffective. There are 3 causes for this.

1. There are no screening tests for the high risk groups.
2. Parents are not educated to recognize the first symptoms of the disease.
3. Even the better educated parents don’t know whom to call when the symptoms are recognized.Timisoara needs an effective educational program.

2. Parents lack the education necessary to provide adequate care during the gradual development of the disease and during the appearance of opportunistic diseases. Parents need a resource center where they can get support and guidance.

3. Physicians are not educated in the unique nature of AIDS. They do not know how to slow the disease’s development or prevent the appearance of opportunistic infections. They find it impossible to correctly evaluate the stage of the disease, the proper treatment, and monitoring. They have difficulty diagnosing the opportunistic infections. There is no place where medical personnel have specialized training regarding AIDS. Opportunistic infections are diagnosed late, if ever preventing a timely administration of therapy.

4. Parents and children find it impossible to follow an antiretroviral treatment regimen. Parents are poor so they can’t afford treatment and underestimate the important role sustaining treatment has in slowing the development of the disease. Therefore, patient compliance is far from assured. Interrupting treatment causes resistance to medication and accelerates development of the disease.

5. The lack of hospital medical equipment available to children infected with HIV prevents accurate staging and monitoring of the disease, making treatment ineffective.

Our program is designed to provide a long-term solution to this imperative need . It includes:

• education,
• social and family integration of children who are HIV positive,
• evaluation, follow-up, and long-term outpatient therapy,
• inpatient treatment, and diagnosis and treatment of opportunistic infections and diseases,
• and a home for abandoned children who are HIV-positive

Goals and Objectives

Our goal is the realization of an AIDS Relief Program in Timis County designed to assist parents when their children become infected with HIV. It will be composed of four departments:

1. a Day Care, involved in satisfying the medical, psychological, and educational needs of the children,
2. a Learning Resource Center,
3. a home to care for abandoned children, and
4. a Center for Diagnosis and Treatment of opportunistic infections.

Objectives for the first year of operation:
1. to avail Day Care services to 20 HIV positive children.
2. to serve the counseling needs of these families.
3. to furnish a family setting for 5 abandoned children.
4. to provide diagnosis and treatment of opportunistic diseases to these 20 children.
5. to provide a resource center for parental training.

Collaboration

The foundation that we are forming is responsible to implement this project in the community but the Romanian government will also participate. The implementation will be in accordance with direction of the Timis county Council, the Directorate for Protection of Children, the Timis County Health Directorate, and the mayor’s office.

Statistical Summary

** "Romania probes child HIV infections for first time." The Business Review . November 9-15, 1998. p. 2