The Independent Uganda: You get the Truth we Pay the Price
By Flavia Nassaka
There is a huge disparity in diagnosis and treatment due to high costs involved
Cancer may become the next health crisis if Ugandans do not change their lifestyles, according to Dr. Gerald Mutungi, the Programme Manager Non-Communicable Diseases Prevention and Control at the Ministry of Health.
Mutungi says unlike in developed countries where cancers are common among the elderly, the cancer numbers in Uganda have been increasing over the years among young people. He says initially in the 1960s it was cancers of the esophagus that were common especially in men in Uganda but more cancers like the lymphomas have increased with the incidence of HIV. Currently, the prevalence of cancer in Uganda is between 80,000 and 100,000 people.
Of every 100,000 cancer patients, 200 will be newly diagnosed cases. Worldwide, according to the World Health Organization (WHO), at least 7.6 million people die from cancer annually, 70% of the deaths occurring in poor and middle income countries.
Dr. Jackson Orem, the director of the Uganda Cancer Institute (UCI) says 80% of all the people diagnosed with cancer die.
Part of the explanation for this may be depend heavily on the status of sufferers, their awareness of symptoms, and the availability of timely care. Though many people from all walks of life are at risk, there is a huge disparity when it comes to diagnosis and treatment. Due to high costs involved, many people succumb to cancer without either being properly diagnosed or failing to afford timely.
High cost of care
Take the case of Jane Namulondo. The 39-year old who earns a living from sorting garbage at the Kampala City Council Authority (KCCA) landfill in Kiteezi, Wakiso district first felt the tumor in her breast in 2013. “I felt something hard in my left breast. It kept going and coming back until I started feeling pain”, she said while opening her blouse exposing a swollen breast whose skin was peeling off and numerous tumors protruding. Even when she eventually went to hospital in April 2014, Namulondo was not diagnosed immediately as doctors at the Mulago National Referral Hospital required her to undergo an ultrasound scan and several blood tests which went for Shs80,000. She did not have the money and had to save for it. By this time, she could no longer do any work because of too much pain in the chest. When she eventually got the money, she was diagnosed with breast cancer but it was an advanced stage. The doctors proposed surgery at Shs800,000 which is completely out of reach for her.
Namulondo is a single mother of a 13-year old HIV positive daughter. She now lives in pain. When The Independent visited her on the afternoon of Sept. 03, the neat-looking petite woman with well-kept tinted short hair had just taken her daily dose of pain relievers – Brufen and Amitriptyline. She calls them her savior. But unfortunately she cannot afford them all the time.
Namulondo was saving money for the surgery when a doctor at Hospice Africa Uganda gave her more bad news. The surgery, the doctor told her, would not save anything because her cancer had spread to other parts of the body.
Namulondo’s type of cancer takes a particularly harsh toll. It is the world’s most common cancer in women and their leading cause of cancer death, with 1.6 million cases a year and more than 450,000 deaths.
She was initiated on palliative care – a type of care that focuses on easing pain and symptoms of the terminally ill while attending to their emotional and spiritual needs.
Dr. Samuel Guma, the Executive Director of Kawempe Home Care, a medical center that exclusively offers palliative care services, sees many cases similar to Namulondo’s.
He says medical issues are only one part of living with cancer. He says for many people once diagnosed with any kind of cancer, their life changes completely. “It‘s such a challenge for people who suffer from breast, cervical and prostate cancers. It changes everything from relationships to work and daily routines. Cancer treatments can affect the way you look and the way that your body works as it affects one’s emotions and plans for the future,” he says.
Palliative care
Kawempe Home Care is one 96 such centers where patients are referred for psychosocial and spiritual care in addition to handling symptoms such as diarrhea, pain and bad odor until one succumbs.
Kawempe Home Care alone has since January received 26 patients from UCI with advanced Incurable cancer.
Guma says some of such patients die just months or weeks after referral. Only a few survive on relievers such as oral morphine for about a year. He adds that since 2007 when the home care opened, they have handled about 400 patients with different forms of advanced cancer.
During a press conference at the Cancer Institute in Kampala, Orem acknowledged that sometimes they are overwhelmed by the numbers of patients. He says 85% of all patients come from far away rural areas.
When asked about the programmes currently in place to tackle the problem, he said the Institute is carrying out awareness, encouraging people to do periodic screening, and avoid unhealthy diets. “We are planning to develop satellite centers and are doing feasibility to establish regional centers in the west and northern Uganda. This is expected to be effected in the next five years to cut on the numbers visiting the institute,” he said.
There is also ongoing research at UCI on various cancers, especially infection related cancers which are a very big burden. Over 60% are infection-related including Kaposi sarcoma, cervical cancer and lymphomas.
Dr. Joyce Balagadde, a specialist in tumors in children, says some of the ongoing research is focused on discovering new viruses responsible for causing the cancers in the East African region. In April, Uganda was chosen by leaders of the East African Community (EAC) to be a regional center of excellence for oncology – a branch of medicine that deals with tumors. This means more patients will be coming in from the other member countries competing with the hundreds that throng the institute scrambling for the limited resources.
