Covid-19: Patient voices and perspectives in Uganda

Uganda is no stranger to dealing with infectious and emerging diseases, with recent experiences of Ebola and HIV. This has contributed to Uganda’s ability to slow down the rate of infection from covid-19 so far, says Regina Mariam Namata Kamoga.

Fear and panic gripped Uganda as images of patients in the world’s best hospitals in the developed world were seen struggling for life. The big question was, what would it be like in a resource limited setting with a weak healthcare system with financial, infrastructural, logistical and human resource challenges, which greatly affect access to, and quality of essential healthcare services? Furthermore, a setting coupled with patient level challenges, including a lack of trust in the healthcare system, poverty, low health literacy, poor access to healthcare and burden of communicable and non-communicable diseases.

The fear of worst case scenarios led to a rush to stockpile medicines, taking advantage of the weak regulatory system for medicines and lack of knowledge about medication safety issues and antimicrobial resistance. The warnings from the Pharmaceutical Society of Uganda (PSU) and National Drug Authority (NDA) fell on deaf ears. The measures taken by the Ugandan government intended to combat the spread of covid-19 totally disrupted the supply chain and healthcare service delivery system as all efforts were focused on covid-19. Patients with HIV/Aids, tuberculosis, malaria, cancer, hypertension, hepatitis B, epilepsy, sickle cell, as well as mental health, maternal or childhood conditions, faced an increased risk of complications and death due to an inability to access healthcare because of transport restrictions, curfew, poor ambulatory systems and fear of contracting the virus from healthcare settings.

It is important to note that many people in Uganda earn daily wages, so an inability to work due to lockdown was another pandemic in itself. Many families not only found it difficult to afford healthcare costs and buy medicines, but also had nothing to eat. To the poor the hunger threat was even more real than covid-19. The government effort to distribute food was like a drop in the ocean. Scenes with people demonstrating to demand food were common. And cases of domestic based violence and crime escalated resulting in injury and loss of lives. Women and children were disproportionately affected.

Patients with chronic conditions, who rely on medication for their survival and improved quality of life, access, and adherence to medication has been a major problem as they were not able to get their refills, while others could not afford to buy medication due to a lack of income.

Patients who had been newly diagnosed with cancer were not able to be initiated on treatment while others missed their three month refills for hormonal treatment. These delayed initiations and interruption of treatment cycles are resulting in increased stress, anxiety, disease progression, recurrence and premature death. Stigma and discrimination at family and community level was yet another issue to contend with as highlighted by Gertrude Nakigudde, the executive director of Uganda Women Cancer Association (UWOCASO).

People with epilepsy have also found that access to regular and affordable medication is a nightmare, affecting their adherence and leading to frequent seizures and inability to live normally. The stigma, discrimination, isolation at family, villages and community levels predisposed them to a state of hopelessness and poor mental health. Women and girls were most affected, as they also experienced sexual harassment, and rape due to their vulnerability, according to Sarah Nekesa, the executive director of Epilepsy Support Association Uganda (ESAU). 

The founder and executive director of Sickle Cell Association (SAU), Ruth Nankanja Mukiibi, also a sickle cell patient, describes the effects of the pandemic as enormous, citing increased cases due to anaemia, stress, and anxiety. She also said access to prophylactic medicines is a challenge with children particularly hit hard due to finances and inability to access health facilities. The lack of monitoring of patients, particularly those on hydroxyurea, presented a threat of complications.

Efforts by patient organisations to support patients

Covid-19 has affected the way organisations do their work particularly in mobilizing and engaging patients, family, and communities. Nevertheless, they have devised ways of reaching out to them. The members of Uganda Alliance of Patient Organisations (UAPO) and partners have advocated for access to healthcare for vulnerable patients. These efforts have led to easing of some restrictions to allow patients access care, provided healthcare, shelter to victims of domestic violence, raised awareness, counselling using electronic, print and social media, door to door food and drug distribution, transport to healthcare facilities, financial and in-kind support, as outlined below.

Community Health And Information Network (CHAIN) worked with media and community health extension workers to emphasize hand hygiene using tippy taps and appealed to them to follow ministry of health covid-19 prevention guidelines. Through use of community loud speakers and moving from village to village, CHAIN reached over 20,000 community members in Bukomero and Busukuma subcounties. They also worked with the NDA to develop messages on medication safety to ensure they are appropriate and meet the needs of the patient.

Sickle Cell Association of Uganda (SAU), with support from The Dansk Handicap Forbud (DHF), was able to support 40 of the most vulnerable sickle cell patients through delivery of medicines using boda-boda (motor cyclists – a widely spread means of transport in Uganda used as one of cheap means of transport) and providing psychosocial support. 

Epilepsy Support Association Uganda (ESAU) developed tailor-made, informative, educational and communicative materials about covid-19 for its members and disseminated it through text messages, radio sport messages and talk shows countrywide. It also partnered with 5 faith based health facilities in the West Nile region of Uganda and provided financial support, drugs, domestic items, face masks, hand sanitisers and gloves to 320 epilepsy patients.

Uganda Women Cancer Association (UWOCASO) reached out to its 200 members to find out how they were coping with the situation. Through text, telephone calls and social media they provided emotional support and online counselling. Some patients were supported to receive hormonal treatment, and other basic needs. They also coordinated with Uganda Cancer Institute (UCI) to transport patients who needed urgent attention.

The Infectious Diseases Clinic (IDC) at Mulago National Referral Hospital committed to ensure continued delivery of quality HIV care and treatment services to its patients. The clinic has succeeded in doing so by adhering to the Business Continuity Plan (BCP) which was put in place to guide the institute in maintaining its core responsibilities among which includes continuity of patient treatment and safety as well as staff safety and well-being.

The power of music cannot be overemphasised; it’s a common approach of reaching communities where many are illiterate. Many local artists including school children composed songs to raise awareness about covid-19.

In Uganda, covid-19 has reemphasised the importance and need to strengthen healthcare systems and prioritise health funding to enable the government be more prepared to respond to healthcare and system challenges. National health insurance should be a priority and the need for the government to fast track its implementation is crucial, if only to meet the Sustainable Development Goals (SDG) and Universal Health Coverage (UHC) targets.

Studies show several weaknesses in health care systems of low – medium countries therefore it might be a tall order to expect the system to respond to all the deficiencies immediately to achieve a functioning health care system, but the pandemic has accelerated the process to getting there.

Patient centered healthcare and patient safety 

Even amidst a pandemic where patient safety is put to the test and during a bid to find a vaccine as soon as possible, it’s critical that patients are meaningfully engaged and high ethical standards governing clinical trials, particularly for vulnerable patients, in resource limited settings are applied. Patients need to seek healthcare with confidence, without fear of being harmed.

I believe patient empowerment, or lack of, has greatly contributed to how fast or slow the disease has spread in some of the different areas of the world. 

With some measures, such as social distancing and quarantine deployed to counter the spread of the virus, patients still need access to medicine and health care. Empowerment of patients to self-manage chronic conditions, especially during such unusual times where they cannot access medical centres as often as possible, has been necessary while emphasising health literacy and telemedicine.

The pandemic has left a number of people with no jobs and heavy salary cuts as companies try to find ways to save on operational costs. It has emphasised the need to build life skills, such as saving to cater for basic need in times of a crisis. Most of the population are low income earners and live paycheck to paycheck, therefore there is need to empower them for the future.

Strengthening of community structures to effectively respond to covid-19, the role of community leaders including political, religious, cultural and community extension health workers in mobilising and engaging community members, is invaluable. The potential of community involvement in the covid-19 response has not been fully exploited.

Deliberate effort by key stakeholders to address the psychological needs of the population in order to mitigate the impact of mental health issues resulting from challenges of this epidemic is required and should be integrated in all aspects of the response.

Mariam Regina Namata Kamoga, executive director, Community Health And Information Network (CHAIN), Uganda, and founding member, World Patients Alliance (WPA).

Competing interests: none declared.