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While significant global attention has shifted to coronavirus in recent months, palliative care providers in Uganda recognize that now, more than ever, it is critical to ensure that cancer patients continue to get the care that they need – especially because they are more susceptible to dying from the novel coronavirus disease should they contract it.

Uganda Cancer Institute (UCI) and the Palliative Care Association of Uganda (PCAU), among other palliative care providers, are calling on government and other stakeholders to take action to ensure continuity of cancer-related health care, despite the necessary urgent attention going to COVID-19.

It has been noted that coronavirus infections and fatalities are higher amongst people with underlying health conditions. Therefore, it goes without saying that cancer patients are among those at high risk of contracting coronavirus and progressing to severe symptoms with high chances of fatality.

Dr. Jackson Orem, the Executive Director of UCI says it is against this backdrop that the Institute has constituted a response team to prevent the spread of the virus among cancer patients and their caregivers, with focus on four areas;

  1. general protection of staff,
  2. reorganization of UCI functions,
  3. streamlining COVID-19 management and triage, and
  4. management of information.

The main objective of doing this is to make sure that staff and patients who present with symptoms that may be common, are quickly recognized and we avoid complication. This is because cancer patients ordinarily present symptoms that are similar to those of coronavirus,” Dr Orem said, speaking in a recent online discussion hosted by Mark Donald Mwesiga, the Country Director of the PCAU.

“Most of the patients may not come with the symptoms, so our main focus should be to get those patients who will fall within the 20% with either moderate to severe or who may actually need critical care,” Dr Orem adds.

He stressed the importance of protecting staff through the provision of the requisite Personal Protection Equipment (PPE), citing cases like Italy and UK where many health care workers have succumbed to coronavirus due to occupational exposure.

UCI has reorganized its services to make essential care services available and improve service delivery to people undergoing cancer treatment. For instance, the Institute has suspended elective procedures (including surgeries) such as screenings and outreaches which could expose staff to COVID-19 due to overcrowding.

A toll-free line has been established to engage cancer patients who have complaints or require assistance.

“Patients being referred to the institute will continue to be attended to, so as to prevent the disease from progressing. Same applies to those receiving active treatment. Those that have completed treatment and are currently on follow up will stay home and we’ll interface with them through telephone or online media”.

“To reduce the risk of people with COVID-19 mixing with our patients, we have introduced screening points at our entry points. So, if you come to UCI, you are going to be subjected to screening. We want to detect any sort of disease as quickly as possible” – Dr Orem

To further ramp up testing, UCI is working on having PCR tests in place at the Institute and later antibody testing capabilities.

“We also want to create a registry for cancer patients who test positive for COVID-19 because we want to understand the impact of COVID-19 on their cancer as well as the impact of cancer on COVID-19, so we can respond better”.

The UCI Executive Director says it is critical to have better coordination among the different cancer service points in the country.

He said that contrary to the past, coronavirus is a reawakening that the Uganda Cancer Institute is very important and that there has never been a more critical time to facilitate it (Institute) with all the support it requires.

In underscoring the plight of cancer patients in Uganda during the current COVID-19 lockdown, Dr. Guma, a public health specialist who also chairs Uganda Cancer Society said “Most cancer patients lack access to health care right now, and this is due to physical and financial barriers”.

“The government restrictions on movement of public and private transport have caused a lot of challenges. We have patients from upcountry who are unable to come to UCI for treatment. Some had appointments for chemotherapy or radiotherapy. We also have those who have been stuck in Kampala and cannot travel back. The problem could increase mortality,” said Dr. Guma, who is also the Executive Director of Kawempe Home Care.

The Cancer Society has held engagements with UCI and stepped up awareness campaigns through the media which has seen some restrictions on cancer services being eased.

Dr. Guma however noted that many of the staffers who provide cancer services still face challenges in movement due to the lack of clearance as an essential service, which has frustrated service delivery.

“In this era of COVID-19 we are really advocating and insisting to the policy makers that cancer care should be integrated into the COVID-19 response. Cancer treatment has to go on and patients need to go through their course of treatment and get a better life”.

A perspective from the community level points to similar challenges, although palliative care providers are doing what they can to support the patients.

Antonia Kamate is the Site Programs Manager at Mobile Hospice Mbarara, in Mbarara district, in Southern Uganda. The Mbarara office takes care of cancer patients from the entire region (over 10 districts).

She says Hospice Mbarara’s activities, including outreaches and home visits, have been scaled down as a result of the coronavirus lockdown. Such outreaches were critical in easing the cost burden on patients, especially transport.

“The number of patients visiting the hospice has drastically reduced. Transport is a challenge. We are wondering what’s happening with them during this period? There are women who are bleeding in the community and we have to find a way of bringing them to hospital for transfusion, but with very limited transport options,” Antonia says.

“Even those that we managed to send to UCI for radiotherapy had to return home quickly to avoid getting locked down in Kampala.”

She says that on a daily basis, the office receives 11 to 18 patients who come in for physical care and medication. The team of health providers at the hospice is worried about the risk of contracting the virus in the absence of enough protective gear.

“We are doing our best to continue giving palliative care services, focusing on quality of life of patients, but we are struggling financially. It has become difficult to sustain donor-dependent services, (as donor nations and agencies have also been affected by COVID-19) making it difficult to get the finances we require. We appeal to the Palliative Care Association of Uganda to advocate more to the Ministry of Health for specific support to hospice work in this country,” said Antonia

PCAU has organized a weekly webinar discussion series to update the Palliative Care Fraternity in Uganda on the COVID-19 response, each attended by over 60 people who include key policy makers and leaders, palliative care practitioners and other participants.

Recently the President of Uganda Directed that Palliative Care issues concerning delivery of palliative care services during the COVID-19 pandemic be handled by district health officers. This was the prayer by PCAU and other stakeholders at one of the online discussions. The directive has eased movement for some patients seeking medical care, especially those who can afford to hire cars or who own vehicles. The traffic police respect medical concerns and allow them to proceed when they display medical documents. However, those who cannot afford to hire private transport still face difficulties in accessing medical care and medicine refills.

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