EstherNapeyok, 26, still has flashbacks of her most agonizing moment. Last year, this mother of seven was diagnosed with advanced stage cervical cancer which has left her with excruciating pain and psychological trauma.It is a perilous walk through the hillyterrain of Kategok Sub County in Abim district to Napeyok’s home, a simple grass thatched hut.
After a 40 minutes’ walk, I am accosted with a diminutive and fragile bodied Napeyok, donning a floral white top and dark blue skirt. She moves with slow steps to meet me and narrate her ordeal. The depressed expression on her face hints a signal to the struggles she is and has gone through to try and maintain a sense of normalcy.Napeyok struggles with pain and tears, as she narrates to me her diagnosis, misery and suffering.
“I frequented Abim hospital several times, trekking over 25kms each time to seek treatment for the very excruciating abdominal pain and excess bleeding. I also had a foul smell from my private parts. All these visits did not help. They always diagnosed a urinary truck infection. I would go home with antibiotics”, she says, tears welling in her eyes.
In a seemingly pensive mood, Napeyok keeps quiet, unable to narrate further. Her daughter and care taker, TeopistaNakengpicks up from here. She tells us that her mother was diagnosed with cervical cancer during an outreach conducted by Reproductive Health Uganda in the area.
“When they came in our village, mummy went there. After the screening, they told us that she has cervical cancer and referred us to the cancer institute in Kampala because the cancer was in its advanced stages,” she reminisces.
Teopista however says that they have not been able to travel to Kampala because they cannot afford the transport fare and treatment costs. She is torn between nursing her mother and taking care of her six siblings, all below the age of 12.Asked about her father, Teopista states that he abandoned them after learning that his wife has cancer and will be ‘dying very soon.’
Napeyok is just one of the thousands of Ugandan women who are suffering with cervical cancer-a preventable and treatable disease.
Graphic illustration of the transmission, development, prevention and treatment of cervical cenacer
Cervical cancer occurs when abnormal cells on the cervix (lower part of the uterus which opens into the vagina) grow out of control. It is caused by the sexually-transmitted Human Papillomavirus (HPV).Specifically, about five types of HPV (16, 18, 31, 32 and 45) among about 100 known strains have been linked to cervical cancer. Estimates by the World Health Organization (WHO) suggest that types 16 and 18 account for 70 per cent of all cervical cancers in Africa.
“Cancer of the cervix was traditionally a disease for older women, above 40 years, but nowadays, younger women are being diagnosed with the disease because of early sexual debut,” Dr. Judith Ajeani, consultant obstetrician and gynecologist, says, adding that the cancer is also common among women who have multiple sexual partners.
Uganda has a population of 9.71 million women aged 15 years and older who are at risk of developing cervical cancer. The burden of cervical cancer in Uganda is enormous, accounting for 40 per cent of cancers seen at the Uganda Cancer Institute (UCI). According to Uganda National Cancer Registry, this type of cancer kills about 2,275 women annually and 3,915 new cases are diagnosed every year, especially in women aged 15 to 44. By comparison, 1,100 women die of breast cancer every year, according to the Uganda Women’s Health Initiative (UWHI). Breast cancer was in the recent past leading in female cancer related mortalities in Uganda.
Additionally,a study published on May 28, 2015 in the JAMA Oncology online Journal confirms the increase in cervical cancer in Uganda. The study titled: ‘The Global Burden of Cancer 2013’ notes that the number of new cervical cancer cases increased from 2000 in 1990 to 3400in 2013. Furthermore, cervical cancer is the leading cause of cancer morbidity (illness) and death in women, being responsible for 2300 deaths in women annually in 2013 from 1400 in 1990.
“Patients in low resource countries such as Uganda bear the largest brunt of the disease increase due to limited awareness, screening services, resources and limited access to quality cancer services. If left unchecked, the burden is likely to increase twofold before 2030,” the report partly reads.
REGIONAL &GLOBAL STATUS
A graphic representation of cervical cancer trends across Africa: Net photo
The national trends seem to reflect the global scene. According to WHO, there are an estimated 530,000 new cases of the disease each year, leading to at least 270,000 deaths, most of them in developing countries. Of the 20 countries with the highest incidence worldwide, 16 are African, including Uganda.
“Annually, an estimated 500,000 women are diagnosed with cervical cancer and more than 270,000 women lose their lives to this devastating disease. Unfortunately, nearly 85 percent of the women who die live in resource- poor countries like Uganda, where there is limited access to cervical cancer screening programmes,” partly reads a report by WHO.
In Tanzania, it is estimated that 13.67 million women aged 15 years and older are at risk of developing cervical cancer and 7,304 women are diagnosed with cervical cancer and 4216 die from the disease annually. This situation does not vary much from Kenya where 12.92 million women in the same age bracketare at risk of developing the cancer.About 4,802 are diagnosed with it and 2,451 succumb to it annually.
RISK FACTORS & SYMPTOMS
Early onset of sexual activity predisposes girls to cervical cancer. Other known risk factors for the disease include persistent HPV infection, family history of cervical cancer, having multiple sexual partners and HIV/Aids infection.
According to the International Agency for Research in Cancer (IARC), cigarette smoking, long-term use of hormonal contraceptives and co-infection with other sexually transmitted infections such as genital chlamydia trachomatis, HIV and the herpes simplex virus contribute to development of cervical cancer after infection with HPV.
Dr Ajeani says there are no initial symptoms and signs of cervical cancer in its early stages. However, during the later stages (stage 3 to 4), abnormal vaginal bleeding between regular menstrual periods, pain in the pelvic area and pain during sex are noticeable.
Despite increasing cervical cancer cases, Uganda is still playing catch-up in the critical areas of awareness, diagnosis and treatment of the disease. Dr. Fred Okuku, a senior oncologist (cancer specialist) at UCI says over 70 per cent of people who turn up at the Institute are normally diagnosed with cancers which are in the fourth stage. This is partly attributed to inadequate routine cervical cancer screenings because of lack of a national screening program.
“More than three quarters of patients report with advanced stage cancer, which takes more than six months to treat. The survival rate in the advanced stages is usually about 40 per cent. If detected at a pre-cancerous stage (when the cells are not normal but not yet cancerous), this cancer is 100 per cent curable,” Dr. Ajeani notes.
At Abim hospital where Napeyok frequented, there is no cervical cancer screening equipment.
“When the patient presents the signs and symptoms, we simply refer them to have the cancer screening done. Those who are financially able, travel to Soroti Regional referral hospital for the screening. The majority go back home to await their death,” Dr. Obonyo Michael of Abim hospital shares.
Additionally, there are inadequate radiotherapy services as the country has only one radiotherapy machine, located at Mulago hospital.
“The work load on it is heavy and sometimes patients have to wait up to about three weeks to receive treatment. Meanwhile, we admit about two patients on the ward everyday and it takes about six months for the older ones to leave,” Ajeani says, adding that the national referral hospital does not have a linear accelerator, which is used for external beam radiation treatments.
Moreover, outdated equipment characterized by frequent break down is yet another screw loose. Some of the old equipment includes a brachytherapy machine (used to treat cervical, prostate breast and skin cancers) and a simulator (a special x-ray machine). This has resulted into delays in accessing treatment and underperformance of the institute.
A patient undergoes cervical cancer treatment Mulago hospital-Photo by Solomon Serwanjja
Dr. Jackson Orem, the director of Uganda Cancer Institute, says the average cost for cervical cancer treatment irrespective of stage is estimated at $3,000 (approx. Shs 11million).
“This cost, however, covers only treatment and does not include the social costs such as transport, accommodation and upkeep if the patient is coming from far areas such as Arua, Koboko”, he adds.
According to him, the annual budget for cancer management in general has been increasing steadfastly, and stands at Shs 15 billion this financial year, up from Shs 10 billion last financial year. This accounts for 0.0625 per cent of the annual national budget.
However, cervical cancer gets some additional funding from Reproductive Health Uganda (RHU), a non-governmental organization.
PREVENTION, DIAGNOSIS & TREATMENT
Dr. Ajeani notes that it may take up to 15 years for precancerous cells to transform into cancerous cells. In order for one to detect these precancerous cells, one needs to do a pap smear.
“During a pap smear, the doctor scrapes a small sample of cells from the opening of the cervix and examines them under a microscope to look for cell changes.
If a pap test shows abnormal cell changes, your doctor may do other tests to look for pre-cancerous or cancer cells on your cervix,” she explained.
DrAjeani demonstrates cervical cancer development using clinical instruments. Photo by Racheal Ninsiima
One may also do a visual inspection with acetic acid (VIA) where a health care provider applies acetic vinegar such as apple cider vinegar to the cervix and indentifies areas that change color. Normal cervical tissue remains unaffected while pre-cancerous or cancerous tissue turns white.
“After diagnosis, depending on how much the cancer has grown, one may have one or more treatments. The commonest types of treatments for cervical cancer in Uganda are radiation and chemotherapy.
Prevention of HPV is two-fold: primary and secondary prevention. Primary prevention can be achieved through behavioral change such as abstinence and using a condom when having sexual intercourse. It can also be achieved through biological mechanisms such as HPV vaccination.
“Vaccination against HPV has been proven to prevent the types of HPV that cause the majority of cervical cancer cases. We have an important responsibility to improve access to vaccines worldwide, as they are still beyond reach for low-income countries,” says Farouk Shamas Jiwa, the director public policy, MSD, a global health care organization providing medicines and vaccines.
However, the HPV vaccine, Gardasil is associated with serious risks including the worsening of precancerous lesions and sudden death, according to the Vaccine Adverse Event Reporting System (VAERS).Between June 1, 2006 and December 31, 2008, there were more than 12,000 reported advance events following Gardasil vaccination in the US.
“As of May 13, 2013, VAERS had received 29,686 reports of adverse events following HPV vaccinations, including 136 reports of death,” partly reads a statement from VAERS.
To strengthen the vaccination move, Dr. Robert Mayanja, the program manager, Uganda National Expanded Programme on Immunization (UNEPI), says vaccination of all primary-school-going girls against cervical cancer started in August.
Under secondary prevention are measures such as regular screening and early treatment. Currently, screening services can be found at Mulago, Mbale, Mbarara, Masaka, Ibanda, Soroti, Gulu and Kisoro hospitals. It is also available at Nakasongola Health Centre IV.
NEED FOR PALLIATIVE CARE
Faced with a confrontational situation where cervical cancer goes undetected until it’s in its late stages and limited access to health services, the solution for many such patients remains palliative care. WHO defines palliative care as an approach that improves the quality of a patient’s life facing problems associated with life threatening illnesses through treatment of physical, psychosocial and spiritual pain.
“Palliative care is usually availed to HIV and cancer patients and while it does not cure a disease, it prolongs life for a considerable period of time and restores the quality of life. This is mainly through the use of morphine which medically relieves pain,” says Rose Kiwanuka, country director of the Palliative Care Association of Uganda (PCAU).
Ugandans who cannot access a health worker can now access palliative care through trained community volunteers and referral system with in their community. Josephine Nabitaka, the health service coordinator at Hospice Africa Uganda, says the organization has trained palliative care health workers and is working with health facilities countrywide to avail palliative care.
“We are working in 90 of the 111 districts and provide palliative care in 133 health facilities to those suffering with cervical cancer and other conditions. We also provide home based care using modern methods of symptom control,” she says, adding that currently 265 women are receiving palliative care treatment from Hospice branches countrywide.
Despite the much needed care, Dr. Amadua Jacinto, the commissioner of clinical services in Ministry of Health, says there are inadequate trained palliative care professionals in the country. Additionally, there is inadequate understanding and targets for palliative care, inadequate awareness and training institutions.Dr. Amadua calls for the development of palliative care policies covering training of health workers to ensure that they are legally allowed to prescribe opioids including morphine and integration of care into the country’s mainstream services.
PRIVATE SECTOR EFFORTS
The Ministry of Health in partnership with local private health partners like PACE supported by Bill and Melinda Gates Foundation last month launched a nationwide cervical cancer screening effort to women with affordable access to cervical cancer screening and treatment in country.
This has resulted into a considerable number of women especially those in rural areas to access life-saving cervical cancer screening and preventative therapy services in a number of private clinics across the country.
Sara Namukasa (not real name) 30, from Masaka district is one happy woman after being declared free of cervical cancer when screened at a ProFam facility in her community. Before this screening Sara was worried about cervical cancer after witnessing the death of her close friend to the disease.
“If I knew what I know now; my friend would not have died. I would have escorted her to the health center for screening,” she says forlornly.
Today, Sara is one of the many women PACE is screening for cervical cancer through its ProFam network. PACE through its 181 ProFam health facilities has screened over 20,000 women. Under this four year partnership, PACE intends to screen and treat 170,000 women offering Visual Inspection with Ascetic acid (VIA) to establish presence of cancer onset and if suspected cancerous cells are found, preventative therapy by Cryotherapy machines will be provided.
With better screening and treatment services in country, Uganda and sub-Saharan Africa can lead the fight against cervical cancer.