World Cancer Day 2024: Closing the care gap
ACCORDING TO the Kingston and St Andrew (KSA) Cancer Registry, approximately 500 each males and females are diagnosed with cancer each year. This registry is the oldest in the English-speaking Caribbean. This data includes the fiveyear period up to 2012. The updated data for the period from 2013 has not been available, because of staffing challenges, to complete the data entry and confirmation. The National Cancer Registry has been launched, and they have been collaborating with the KSA cancer registry to cross-check their data with the non-KSA registry data. This collaboration is essential to ensure completeness of data.
World Cancer Day was structured as a multi-year three-part programme to increase global involvement to achieve the theme of ‘Close the care gap’.
The three-year campaign started in 2022 and will end this year, 2024. Each year, the focus was different but the overall goal was to identify issues which resulted in inequities in cancer care, engage all stakeholders in addressing these inequities, and eventually to improve cancer prevention and treatment and improve quality of life for those affected.
Inequities in cancer care are not unique to developing countries, although it is a significant problem in our islands. In countries with adequate resources, there are issues with access for parts of the population because of barriers such as race, economic status, limited access to healthcare and distrust in the healthcare system, among other reasons, resulting in gaps in care. So, what are some of the factors which contribute to these inequities?
Education: Many persons are not aware of the measures that they can take to prevent cancer. These measures are simple for the most part and include exercise, maintaining a healthy weight and eating a healthy diet, avoiding tobacco and alcohol usage, prevention of sexually transmitted infections, using sunscreen, and following screening guidelines. School feeding programmes, especially those which limit unhealthy foods and have increased fruit and vegetables, not only try to prepare children for future healthy eating, especially if paired with education of the food groups and their importance, but can help in cancer prevention when started early in life.
Vaccination against Hepatitis B is included in the recommended vaccination schedule. Vaccines against these organisms can prevent some causes of liver cancer, while the HPV vaccine can reduce the chance of some types of oropharyngeal cancer (cancer at the back of the throat) and cervical cancers caused by the Human Papilloma Virus (HPV). HPV infection is also associated with anal, vaginal, vulval, penile and rectal cancers. In the US, 70% of oropharyngeal cancers are caused by HPV. More than 90% of sexually active men and 80% of sexually active women will be infected with HPV in their lifetime. Most times, the body will clear these infections. There are different types of HPV vaccines. The bivalent vaccine can prevent at least 70% of cases of cervical cancer, as it prevents the two commonest HPV which cause cervical cancer. Other types of vaccines can protect against other subtypes of HPV, with one particular vaccine being protective against 9 different subtypes of HPV. In Jamaica, one study demonstrated that 10% of cervical cancer cases were the result of HPV 45, which is not protective against this strain of HPV in the bivalent vaccine. However, when the vaccination programme was rolled out in Jamaica, the uptake was only 30% in the target population and it was offered only to girls. This failure in uptake was in part because of miseducation of parents about the vaccine. Vaccination against HPV should begin typically between the ages of 11 and 12, and can be offered up to the age of 26, because, as with all vaccines, they will only be beneficial before the individual is exposed to the virus.
BETTER OUTCOMES
Additionally, recognising certain changes in the usual state of health may also result in earlier diagnoses and, usually, better outcomes. Things like breast lumps should not be ignored simply because the patient is young, as, although breast cancer cases increase with increasing age, they can occur in patients under the age of 40, which is the currently recommended age at which mammographic screening should occur. Changes in bowel habits or seeing blood in the stool may be related to something benign like piles, it can also be a sign of cancer. Persistent back pain may also be something that requires further investigation and it should not, in the appropriate age group, be written off as arthritis.
Many myths about cancer exist in the population, and an ongoing education campaign at places where people meet might be helpful. This includes church groups and schools and universities, as well as workplaces. Failing to share concerns with a trusted family member or your family physician because you are afraid that it might be cancer is another common practice in our population resulting in late presentations in our patients. Fear of diagnostic procedures such as mammograms and a belief that they cause cancer by squeezing the breast is a myth that has been expressed by some persons in our population. Limited access to colonoscopies because of cost and few facilities also creates inequities in care; and the aversion in some persons to digital rectal examinations continues to contribute to late diagnoses.
The banning of smoking in public places in Jamaica is another area that will yield great benefits in prevention, as tobacco use is causative in many cancers. For those who have not yet overcome the addiction of tobacco use, while still trying to do so, they should be advised on the role of low dose CT scan screening to reduce their risk for advanced lung cancer.
The Jamaica Cancer Society (JCS) offers screening mammograms at low cost, and even offers this on weekends to facilitate persons who may not be able to access these services on weekdays. Unfortunately, there is no mobile unit to facilitate a wider coverage of the island. Additionally, the JCS offers Pap smears and prostate cancer screening at various locations. This is done with volunteers, including surgeons, urologists, gynaecologists, radiologists, nurses, and cytotechnologists. The funding of these activities comes from their fundraising activities, corporate sponsors, the National Health Fund, overseas donors and private Jamaican citizens.
We need greater volunteerism, as government input, though invaluable, cannot do all the needed education without the support of specialists in the areas who can provide expert guidance related to screening and prevention campaigns.
Cancer treatment: This is the other major barrier to closing the care gap in our population.
Cancer treatment involves many individuals, including radiologists, oncologists both medical and radiation, pathologists, psychologists, nurses, social workers and dieticians. Unfortunately, all these services are not available throughout the island and many are concentrated in cities and towns, marginalising care for persons located in more rural communities. All services have limited availability in hospitals and health centres, and so all those who need access are not able to receive the needed help. Many of the services are available through private facilities and therefore out of reach for many persons because of cost constraints.
It is important that the public hospitals be adequately resourced with equipment, with service contracts for their upkeep, as well as personnel with expertise, in order to interpret results and make recommendations for treatment. The University of the West Indies postgraduate training programmes, which train these specialists provide a cadre of experts, some of whom receive further specialist training overseas, provides much-needed persons to assist in the diagnosis and treatment of cancers but they are unevenly distributed islandwide, thus making patients have prolonged waiting times for surgeries, clinic evaluation, biopsy or surgery results. This has a negative impact on their long-term outcomes.
At some hospitals in Jamaica, multidisciplinary tumour boards, or MDTs, have been instituted. At these meetings, persons from different specialties discuss cancer cases and devise a consensus plan for the patient management. This, when applied, has been shown to improve patient outcomes and so it is a practice that should 1. Be more widely adopted 2. Be considered as the final decision maker in patient management, and 3. Be mandatory and not done solely on an as-needed basis. This will allow more uniformity of care, given the multidisciplinary approach, and thus enhance patient outcomes and reduce inequities in patient management.
The cost of investigations and treatment can also be a barrier contributing to imbalance in patient care. The attempts which have been made to minimise this include inclusion of some cancers (breast, colon and prostate cancers and multiple myeloma) on the National Health Fund (NHF), partnerships between Pharma and the NHF to allow significant increase in access to medication for some diseases and the ability to apply for financial assistance from the Compassionate Care Fund, and the CHASE Fund.
The University Hospital of the West Indies (UHWI) is considered a semi-private hospital because patients pay fees for service and there is an assumption that persons who attend the UHWI have resources and can therefore pay for medications. Persons attend the UHWI because of familiarity, geography, shorter wait times for appointments, and not because of being financially able. This results in persons not keeping follow-up appointments, noncompliance with treatment plans, and returning when their disease has become very advanced with no longer a hope for cure. There therefore needs to be a better assessment of a patient’s ability to pay for services and this should not exclusively be based on where they seek healthcare.
Many new drugs have become available to target abnormalities which drive the cancer at the cellular level. And while data on efficacy of some of these agents is robust, the cost is prohibitive for most. Pharma companies should play a role in helping not only to provide the test to determine the role of a particular medication but also to devise innovative strategies, such that those in need will benefit from these treatments. This has been demonstrated and practised by some companies, with many persons who would not normally benefit from treatments that were standard care decades ago now being able to access this in Jamaica.
NEED FOR MORE EQUITABLE ACCESS TO CANCER CARE
There needs to be a more equitable approach to offering support for access to cancer care. Some possibilities include a national insurance contributed to by all employed persons, a more transparent and fair system in determining the fees that persons pay for services, as well as utilisation of private health insurance, regardless of where the individual is accessing care.
Radiotherapy also is extremely important in the care of patients with cancer. Some cancers are best treated with chemotherapy and radiotherapy being given concurrently or at the same time. Radiotherapy also needs to be given within a certain time after a cancer diagnosis and, because of limited public facilities, there are frequent delays in offering these services in a timely manner. The delays are caused by equipment failure, which may be associated with the age of the equipment, lack of routine servicing of equipment, limited staffing, all contributing to backlogs and inappropriate timing of treatment, resulting in poorer patient outcomes.
Another barrier to cancer care relates to fear of side effects of treatment, often from sources with very limited knowledge of chemotherapy effects and ways to minimise them, as well as the assumption that all drugs cause the same side effects. While acknowledging that toxicities to these medications do exist, these should be discussed with the treating physician to outline the goals of care and thus the need to continue or reduce treatment durations and doses. There is a great need for education in this regard, as all chemotherapy is not created equal in terms of side effects, and also because many measures have now been included in the practice of oncology to reduce side effects.
Advocacy is an area on which we need to be educated. Patients can be very passive about their needs, with a feeling that their voices do not matter. Our patients and all those involved in their care need to partner together to speak with one voice to persons in authority to advocate for improved services and wider accessibility to these services. Without the patient voice, physicians are perceived as complaining and demanding.
Areas of cancer care that are often overlooked are those involving social interventions. When someone is diagnosed with cancer and receiving treatment, there are psychological and social issues which need to be addressed. As friends and family, there is a lot that can be done to lessen the burden. Asking the affected person what help they need, is it help with meal preparations, taking children to school, taking them to and from appointments, someone to talk to, taking to church or an entertainment event and many other such interventions, goes a long way in decreasing the burden and increasing compliance with treatment protocols.
Finally, we cannot only rely on the government to carry the entire burden, although, as previously outlined, there is a lot that must be done by it. We need involvement by patients who must advocate for themselves, support from private companies for volunteer organisations such as the Jamaica Cancer Society. These companies can also sponsor education of individuals on an ongoing basis and not just their office staff, to prevent late presentations. Pharma also needs to partner more with the health authorities to offer tests and drug discounts to improve access. Family physicians play an important role in reminding patients of ageappropriate screening tests such as mammograms, colonoscopies and Pap smears. Urgent attention needs to be placed on improving access by looking at ways to improve the physical location of services and adequate coverage both in terms of adequate staff and equipment, and recognising cost constraints which are real barriers to closing the care gap.
As this period comes to a close, it is important that any strides made in closing the gap be maintained and enhanced to allow our patients to engage in preventive strategies as well as access treatments which will improve their outcomes.