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When your child develops cancer

Dr worried about limited support for families

BY JANICE BUDD Associate Editor — Sunday buddj@jamaicaobserver.com

Sunday, January 06, 2013    

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A diagnosis of cancer in a child always sends powerful ripples of fear and worry through their parents and loved ones.

In truth, it is not just the child who most likely has an arduous and painful journey ahead of them with the potential of a devastating outcome, but families must endure the transition from feeling safe and in control of their lives, to living with vulnerability and uncertainty.

In Jamaica, where how much parents can spend impacts whether their child will survive, there is growing concern that more needs to be done to help families navigate the painful journey of cancer treatment.

The country's only local paediatric oncologist/ haematologist Dr Michelle Reece-Mills, has treated more than 100 children with cancer and life-threatening blood disorders such as leukaemia, sickle cell and haemophilia. Her concern is that scarce resources sometimes compromise the physical and emotional well-being of parents and their children who are cancer victims.

"This job comes with many challenges in a resource-limited setting. Finance is always an issue," Dr Reece-Mills told Jamaica Observer. "The infrastructure as it exists at most hospitals doesn't have sufficient isolation facilities for this population who are more prone to infection. Many promising therapies that have made a difference in outcome overseas are not available locally. One such therapy is bone marrow transplantation. Specially trained nurses with experience in managing cancer patients are even more essential."

According to Dr Reece-Mills, social support for parents is also limited.

At the University Hospital of the West Indies, patients are referred to the Social Work Department at the time of diagnosis. An initial meeting is held to assess the needs of the family and an early referral is made to the Ministry of Health if financial assistance is needed. An open-door policy is maintained to facilitate the families, she said. But financial problems limit the depth of emotional care.

"Social workers often feel frustration when financial assistance is not forthcoming. Liaison with a clinical psychologist is made if coping seems to be the major issue. One social worker commented that parents don't seem to fully understand their child's diagnosis and feels it may be related to cultural issues where parents are reluctant to ask doctors questions. A meeting is held with patients in the presence of a physician to ensure questions are raised that facilitate understanding.

"However, contact with families may be limited after the initial period of diagnosis. As part of their role, however, social workers will make an assessment of the family's living situation (home visit) and make appropriate referrals," explained Dr Reece-Mills.

Support groups have been found to be very helpful, especially for children with new diagnoses. Currently, none exists for parents of children with cancer locally.

One single parent whose child was diagnosed with leukaemia in September 2010 at age 13 — not long after entering high school — confirmed this as she shared her painful story with the Sunday Observer. She said that her only formal offer of emotional support came from her son's pastor and her friends.

"The pastor from his church school offered, but I didn't really go," said the parent, who opted not to be named.

When asked about counselling offered by the public health system, she said: "Mi not even know about dem system."

She said in any case she was too busy trying to find the money for her son's chemotherapy treatments, at $250,000 for each round... he needed three.

She said she did eventually access some money from the CHASE Fund. "I got 250,000 from CHASE Fund, not in hand, but to deal with treatment. That was really only about treatment. He had to have three treatments over the two years before he died," the mother explained.

There was a period when the treatment was not working and the last option was to head overseas. The price tag to get him there: a whopping US$750,000. The cost was astronomical, though the determined and hard-working mother never stopped fighting to find a way to save her son up to the point when he lost his battle with the disease in February this year.

"The drug cost of treating a patient with standard risk leukaemia — which spans over two years for girls and three years for boys — is $200,000 per year at the University Hospital of the West Indies. Additional costs include diagnostic testing through flow cytometry — $30,000 per patient. Insertion of a central line to deliver medications may cost upwards of $60,000," confirmed Dr Reece-Mills.

"For patients who need treatment overseas the financial picture is even graver with therapies estimated to cost upwards of US$100,000," the paediatric oncologist said, adding that this is another aspect of treatment that devastates Jamaican families.

"Out-of-pocket payments are often made for medical and non-medical costs. Because of time needed to care for a child with cancer, sick time and vacation time are often used from jobs, or income is reduced due to less time on the job. Mothers are more likely than fathers to lose time from work, refuse promotions or agree to relocate to accommodate treatment," said Dr Reece-Mills.

She added that proper insurance coverage can reduce the financial burden of cancer care on families and help children maintain access to timely quality care. However, too few have this.

"For the patients unable to afford therapy, some funding is provided through Leukaemia Care — an organisation started by a concerned parent of a child with the disease in 1993. This organisation fund-raises exclusively for children with newly diagnosed leukaemia. Timely provision of drugs is important as interruptions of therapy are associated with an increased risk of relapse," she said.

"For those diagnosed with solid tumours, such as Wilm's tumour or osteosarcoma, no readily available source of funds exists. Access to radiation therapy is also often delayed due to cost issues. Assistance may be obtained through a variety of organisations such as the CHASE fund, Royal Bank of Canada children's fund, and the Ministry of Health, but access takes time, which potentially delays therapy," said Dr Reece-Mills.

The doctor also said that the bonds within families caring for cancer victims who are children are severely tested with varying outcomes.

"Some families become more adhesive with increased strength and redefinition of values. Others with pre-existing issues suffer various degrees of chronic disequilibrium. High levels of parental emotional distress have been found in a number of studies at the early stage of diagnosis and treatment, and for some families this persists over subsequent years, even when active treatment has ended and the child is in remission," she said.

Worldwide, 250,000 children are diagnosed with cancer yearly and 80 per cent of them live in developing countries. In general, the leading types of childhood cancers are leukaemia, lymphoma, brain tumours, soft tissue tumours and renal cancers.

The West Indian Medical Journal reported that leukaemia is the leading cause of cancer deaths for both male and female children up to 14 years, with 22 new cases per 100,000 per year in the region. This corresponded to 30 per cent of all cancers for that age group, which correlates with international data.

Cancer statistics reported for the year 1999 showed the leading causes of cancer-related deaths for the under-20 age group to be leukaemia (14.3 per 100,000) and brain tumour (10.3 per 100,000).

Here in Jamaica, in Kingston and St Andrew alone, between the years 1998 and 2002 there were 35 male and 35 female cases of childhood cancers. For the period 2003 to 2007, there were 28 male and 36 female cases of childhood cancer. Leukaemia represented the second leading cause of death for male and female children up to 14 years, with 13 new cases per 100,000 per year. This corresponded to 20 per cent of all cancers for that age group.

Dr Reece-Mills said in the face of these figures, reducing childhood mortality through the timely provision of medical treatment must be a priority of all institutions providing cancer care for children. This, she said, requires strategic planning from government level downwards with adequate finances allocated for care. Philantrophic donations are also an important part of sustaining care.

"No single health care professional can meet a family's needs completely, given the complexity of diagnosis and treatment. Through collaborative, multi-disciplinary efforts, a health care team can provide comprehensive care that supports the entire family through the disease course," the doctor added.

Psychosocial support is an important but often under-emphasised part of this comprehensive care. Screening families to help predict ongoing psychological difficulties can help the team anticipate how families may react emotionally during the course of the disease and provide a means for quickly and efficiently providing this psychosocial care to families.

Reece-Mills also suggested twinning or partnering with a high-income country. In fact, she said, this "has improved oncology care in many low-income countries through provision of chemotherapy protocols, improved diagnostics and expert consultation. Currently, the Hospital for Sick Children has spearheaded an initiative to help children with cancer in the Caribbean, starting with the development of a paediatric cancer registry and more rapid, accurate diagnoses of various cancers."

Those wishing to make a contribution to the local cancer care effort for children can donate to:

(1) Leukaemia Care — NCB University Branch

(2) RBC/RBTT Children's Cancer Fund — AC# 4410317200297993

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