Legal and societal issues facing survivors of childhood cancer.

The Boy Scouts have a good motto: Be prepared! Childhood cancer survivors and their families--and, if that is their preference, spouses and significant others--must learn to become their own best advocates. Life after cancer should be attacked with the same determination and perseverance that is allocated to life during cancer. Know your resources and how to use them. Learn networking skills and establish your own helping network. This article should give you a good start. Do not let yourself become a victim. Take charge of your future. Childhood cancer survivors are a hardy breed and should be a productive and successful force in society.

What is proper cancer care in the era of managed care?

Managed care and proper cancer care need not be mutually exclusive entities. Managed-care organizations (MCOs) that are committed to patients and society should have the following characteristics: accountability for results, cost containment, measurement of outcomes, health promotion and disease prevention programs, resource consumption management, emphasis on primary care, and continuous quality improvement. Whether these commitments are upheld depends on when and with whom the MCO contracts to provide care and which medical and quality assurance protocols it follows. If proper cancer care is to become a reality in the managed-care era, the oncology community must take a proactive stance. Oncologists must provide the market with an appropriate, efficient disease management plan for cancer. In concert with MCOs, the oncology community must define and, through partnerships, promote the seamless integration of proper cancer care. Patients and advocates should insist that MCOs' quest for efficiency allows for flexibility to address individual patients' circumstances.

Cost-effectiveness and reimbursement in patient care.

The recent collapse of the previously effective coalition of the federal government, universities and medical schools, the pharmaceutical industry, and third-party payers has resulted in the current crisis in funding of clinical trials. The reduced financial support for clinical research comes at a time when a number of new investigational therapies offer the promise of better medical care for patients with life-threatening diseases. Controversy exists regarding the role of physicians in encouraging federal support for clinical research and third-party reimbursement for patient care for patients on clinical trials. Some believe the physician should take an activist role on the issues in general, while others believe that the physician should focus on protecting the interests of individual patients by acting as the patient's agent. Many difficult choices lie ahead for society as a whole in determining what percentage of its health-care budget will be allocated for clinical research, who will pay for patient-care costs of patients in clinical trials, and how this relatively limited resource should be distributed among the population at large. Case-management programs are one attempt to monitor and control health-care costs, but in many instances case management has been used to determine if patients are enrolled in clinical research trials and to disallow coverage for other than standard patient care.

Treatment INDs: research for hire?

KIE: Since June 1987 the Food and Drug Administration has permitted "desperately" ill patients (those with serious or immediately life-threatening illnesses) to purchase investigational new drugs (INDs) conditioned on an absense of comparable or satisfactory therapy and on an adequate enrollment in ongoing clinical trials. The authors question the assumption by large numbers of patients of the risks of new therapies, usually restricted to small numbers of research subjects, before there is any certainty of benefit. They predict that insurers will be exposed to litigation over reimbursement for these "treatment INDs," whose status in insurance contracts is ambiguous, as will physicians who because of their professional judgment fail to disclose experimental options. The authors suggest that since insurers and patients are becoming sponsors of research, insurers should be encouraged to develop new policies that will permit reimbursement for experimental therapies when appropriate.^ieng

Socioeconomic considerations in childhood cancer survival. Society's obligations.

Children have the right to be given the opportunity to become responsible adults. But this right is not assured for children with cancer. They carry a stigma that is the basis for discrimination in education, in the armed services, in employment opportunities, and in the opportunity to receive fair treatment from health and life insurance companies. In this article, examples of discriminatory practices are reviewed, along with the steps being taken to alleviate the situation. The author emphasizes that the responsibility for correcting discrimination belongs to all groups in society--the government, families of children with cancer, and other private citizens--and suggests means by which citizens can end discrimination against cancer survivors.

Resources available to the family of the child with cancer.

Progressive and continuing advances in the care of the child with cancer have resulted in potential cure of over 50% of our children. However, no matter how encouraging these statistics, nearly one half of our children now die from their disease. To bring the family through the cancer experience, we must meet the challenge of attending to their practical, spiritual, emotional and experiential requirement from diagnosis, treatment through possible relapse, death, hoped for cure, and survival as an adult with the stigmata of a history of cancer as an obstacle to jobs, insurance, and productive lives, and the further shadow of a possible late second cancer caused by their curative treatment. Families require access to a firm, unfragmented foundation of support, incorporating a multidisciplinary network of resources, involving the combined efforts of the primary health care team and the family's community. Medical and emotional counseling, peer support, spiritual guidance, and special community services contribute to the optimal care of both patient and family. In addition, legal advisory assistance and help with financial planning are important ingredients in assisting families.

[Follow-up clinical evaluation of raffia treatment of perforated peptic ulcer]. / Valutazioni cliniche a distanza sul trattamento con rafia dell'ulcera peptica perforata.

The authors, analysing their casuistry of 56 cases of perforated peptic ulcer, treated with simple raffia, think this surgical act, although simple, has its own therapeutical meaning in conditions of emergency such as a peritonitic abdomen. A remote checking of such patients demonstrates the validity of said therapeutical behaviour.

[Diverticulosis and diverticular disease (reference to a case of diverticular disease observed in 3 sisters)]. / Diverticolosi e malattia diverticolare (riferimento a un caso di malattia diverticolare osservato in 3 sorelle).

We started from this frequent and important intestinal pathology to emphasize the above mentioned observation of three cases where it was possible to apply three different medico-surgical techniques with excellent results.

Meeting the educational and psychosocial needs produced by a diagnosis of pediatric/adolescent cancer.

Childhood cancer affects not only children with the illness, but their families and their communities as well. Both children with cancer and their parents have need of complete, honest, and regularly updated medical information at their own level of understanding. Children with cancer and their parents also need psychosocial support to help them cope with the impact of childhood cancer on their daily lives, family dynamics, and interactions in their communities. Candlelighters, treatment centers, community organizations such as the American Cancer and Leukemia Societies, and the Office of Cancer Communications of the National Cancer Institute are among those groups meeting these needs with mutual-support groups, educational programs, special libraries, and written and audiovisual materials.