A Reflection Into Situation of PLWNCDs Amid COVID-19 Pandemic

A medical officer checks the blood pressure of a patient. Physical contact makes treatment and care for NCDs a challenge amid COVID-19.

A painful tale of huge costs of treatment amid restrictions on travel and stigma

Generally, people living with Non-Communicable Diseases such as kidney disease, diabetes, breast cancer, heart diseases, and others, need uninterrupted treatment care and support, which may sometimes last throughout life. To ensure sustained and optimal care, people living with NCDs require regular and long-term quality clinical care. This makes it very costly to manage the patients and foot the medical bills.

This financial burden was escalated by the COVID-19 pandemic that adversely affected treatment and delivery of care to people living with NCDs as well as household incomes.

First of all, it became challenging to get to hospitals for treatment and to find medication due to travel restrictions. As a result, some people living with NCDs could not receive medication or other treatment on time.

During the pandemic, many lives of people living with NCDs were threatened according to Mr. Elias Nambaje, 52, who is living with a severe kidney condition in Kigali City.

Mr. Nambaje, who is a Member of Rwanda Kidney Organization, says he has been living with kidney disease for the last 15 years. He says lack of health insurance cover is a massive disadvantage for people living with NCDs.

“One of my main challenges is that community-based health insurance doesn’t cover the high treatment cost of kidney diseases, and the situation was worsened when COVID-19 affected my income. For instance, dialysis treatment requires at least Rwf1 million per month and for patients with transplanted kidneys, it requires about Rwf150,000 per month to buy drugs, which is unaffordable. This cost is not covered by Community Based Health Insurance (Mutuelle de Santé), a solidarity health insurance system used by Rwandans for the purpose of protection and receiving medical care in case of sickness,” says Mr. Nambaje.

Regarding restrictions posed by COVID-19, he says: “I faced other challenges such as lack of medicine during the total lockdown when getting a vehicle to go to the hospital was difficult. Sometimes, I traveled, and security guards stopped me even without checking my medical documents. The pandemic also led to an increase in the price of medicine. For instance, the price of a tablet rose from Rwf 1,000 to Rwf 3,000 due to the effect of COVID-19 on the logistics of health commodities.”

People with NCDs are required to feed well and to ensure a balanced diet in order to boost the body’s immunity. However, the COVID-19 pandemic affected household incomes.  “I have a family to support, so I cut down on the number of daily meals to help balance the family budget and save money for treatment,” Mr. Nambaje narrates.

“I am worried that my weakened immunity could increase the chance of contracting COVID-19. However, following all preventive measures, on the other hand, is the best option to stay free from the Coronavirus,” he stressed.

On behalf of people living with NCDs, Mr. Nambaje advocates for Universal Health coverage for all NCDs. He points out for example that community-based health insurance (CBHI) should cover the entire cost of kidney disease treatment to prevent out-of-pocket expenditures. He appeals to the Government to subsidize the cost of therapy because dialysis and medications (immunosuppressants) taken to prevent kidney rejection after transplant are overpriced.

Fighting NCD stigma

On tackling the issue of social discrimination and stigmatization of people living with NCDs, he reiterates that it is totally wrong. He says it is always important to remember that anyone (young or old) can suffer from an NCD.  “In society, some people think that the life of a person living with NCD has ended, and he/she is just waiting to die. This is totally wrong because people living with NCDs have the ability to do great things to improve their standard of living. People living with NCDs need your support, love and care,” he pleaded.

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Rwanda launches Advocacy Group for People Living with NCDs

Group to enrich Rwanda’s national strategy for the prevention and control of NCDs

From 25th – 26th November, Rwanda held the first-ever National NCD Conference in Kigali.

The conference brought together a cross section of stakeholders, including people living with NCDs, care partners, and the leadership of Rwanda NCD Alliance.

The event also witnessed the launch of the Rwanda Advocacy Agenda of People Living with NCDs.

Dr. Joseph Rukelibuga, who represented people living with NCDs, said they need to be given a voice in decision-making processes in regard to the prevention and control of NCDs.

“As advocates, people living with NCDs should be allowed to speak and share their lived experiences so as to identify gaps in approaches to NCD prevention and control that are frequently missed by institutions and organizations working in this field,” he said during a panel discussion.

“Our contribution is invaluable to creating a more equitable response to NCDs. However, there is still a long way to go before we reach a point where people living with NCDs can inform decision-making and have a real effect on policy.”

Dr. Rukelibuga’s remarks highlight the importance of the newly formed Rwanda Advocacy Agenda of People Living with NCDs, which is expected to provide an opportunity to further enrich NCD response strategies.

The Advocacy Group will also support the meaningful involvement of people living with NCDs in the NCD response, in addition to being a tool to guide the efforts of key stakeholders to improve prevention and control of NCDs and to call for decision-makers to take actions that will positively impact the health of people living with NCDs.

In line with the global advocacy agenda, the body will focus on four advocacy areas: Human rights and social justice; prevention; treatment care and support; and meaningful involvement.

Dr. Francois Uwinkindi, the Manager of Non-Communicable Diseases at the Rwanda Biomedical Centre (RBC), was the guest of honour at the event, representing the Ministry of Health.

He applauded the outstanding work undertaken by people living with NCDs in bringing together lived experiences and recommendations to decision-makers.

“I thank the Network of People Living with a diverse range of NCDs who contributed to the development of the Rwanda Advocacy Agenda of People Living with NCDs. This advocacy tool will undoubtedly aid in the amplification of People Living with NCDs and in the implementation of Rwanda’s National Strategy and Costed Action Plan for the Prevention and Control of Non-Communicable Diseases 2020-2025 by emphasizing on key focus areas.”

Dr. Rukelibuga represented People Living with NCDs on the interactive panel discussion that also included representatives from the Rwanda Biomedical Centre, World Health Organization, and the private sector, to highlight the role of different stakeholders in multi-sectoral collaboration in NCD response.

The Rwanda NCD Alliance was also commended for providing leadership in the consultative process that led to the formation of Rwanda Advocacy Agenda of People Living with NCDs.

Earlier, with support from the Rwanda NCD Alliance, representatives of people living with NCDs from the four Provinces and the city of Kigali, participated in face-to-face and virtual community conversations (focus group discussions) between June – October, 2021. In total, the consultative process involved 102 people living with diverse NCD conditions.  A team from Rwanda NCD Alliance facilitated the consultative engagements.

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