How to protect people living with a rare disease as lockdown measures are being lifted:
The Covid-19 pandemic has had a huge impact on people and their health systems especially those living with rare medical conditions. Due to the underlying health issues the rare medical conditions population is more vulnerable.
With all the changes that have taken place due to the pandemic it is important that the policy makers and other stack holders in Zimbabwe prioritize the specific needs for the vulnerable community which includes people living with rare diseases.
- As CYC we therefore call upon policy makers to advocate for and implement the measures below in order to protect people with rare medical conditions in Zimbabwe:
- We should ensure that there is close monitoring of the spread of the virus especially in the high risk population which includes people living with rare medical conditions.
- Testing should be prioritized for people living with a rare medical condition.
- Stakeholders should actively take measures such as providing free and safe PPE to protect the most vulnerable in the population.
- Access to health care, social care, educational facilities that are safe for the population.
- Schools and educational facilities should be prioritized when disinfecting and relaxing lockdown measures as they are essential for both people with rare medical conditions and their families.
- We need to implement affordable online consultations (Teleconsultations) in order reduce the burden of people traveling to hospitals and minimize infections.
- Lastly all citizens are to play their role in protecting the general population especially the vulnerable ones in order to reduce the risks of infections.
More detailed explanations of the measures above:
During the lockdown a number of people living with rare medical conditions experienced difficulties accessing care for their diseases. Therefore priority access should be given to professionals needed to keep health care facilities safe and accessible for patients. Also many rare diseases have an impact on the immune system and cause immunodeficiency thus a safe environment where both patients, carers as well as healthcare staff are protected is essential.
Safe access to health care should be guaranteed by providing the necessary safe PPE to all health care professionals and support staff.
These include social workers, counsellors, psychologists and educators.
Most rare medical conditions are genetic and start in childhood, therefore social support is an essential service for families of people living with rare medical conditions. It is therefore important for all schools, educational facilities, homes support centres to protect children with rare diseases from discrimination and being disadvantaged. Free and safe counselling should be made available for patients and their carers as these times are most difficult for this community. Where students are unable to go to school the government should provide ICT material in order for the children to access lessons and avoid being left behind.
PPE to be made available to all social support professionals.
Certain sectors of the economy and services are slowly opening again, but people belonging to the rare disease community or their carers are still at a disadvantage as most of them are self-employed and have small vegetable markets that are yet to be opened. This has negatively affected the community as they no longer have a sustainable income.
These individuals should be treated appropriately in order to be able to participate actively in economic and social life this includes changing their way of doing business by using on line platforms to reduce exposure to the Corona virus.
For those who are formally employed working from home should be encouraged in order to reduce the risk of infections.
During the lockdown we have seen the rise in data rates which has affected everyone especially the rare diseases community. Therefore the government should engage the telecommunication providers and offer affordable data to the community in order for them to access medical care and consultations online. This reduces the burden for healthcare professionals and also reduces contact of patients as most of the consultations will be done online.
Child and Youth Care (CYC) is a Zimbabwean-based Private Voluntary Organization (PVO) that was established in 2015. The organization’s vision is to empower children who are affected by rare medical conditions. CYC’s mission is to defend, champion and advance the interests of children with rare medical conditions so as to improve their quality life. Our core values are empathy, kindness, patience, honesty, tolerance, accountability and hope. CYC is in a position to identify children affected by rare conditions and set up different support groups for them.