Story by: Magdalene Duncan
The Ministry of Health has pledged it’s support towards the awareness creation and possibly supporting persons with rare disease their families.
In a press release issued and signed by Mr. Mark Atuahene, Acting Head, Health and Health Promotion of the Ministry of Health to commemorate international Rare Disease day has described the day as relevant and an opportunity to highlight the plight of persons affected by this set of medical conditions.
Also, to show solidarity not with them only but also the brave caregivers who have taken it upon themselves to endure the cultural and societal stigma that is unfortunately associated with persons suffering from Rare Diseases.
According to him, the Ministry of Health acknowledges the plight and challenges of persons living with rare diseases and do hope that their needs can be addressed under the current National Health Policy which promotes equity, inclusion and collaboration among various stakeholders.
The National Health Policy he revealed is adequately themed, “Ensuring Healthy Lives For All” and believes is in line with the central, transformative promise of the Sustainable Development Goals of ‘Leaving no one Behind’.
The release further revealed that Rare Diseases affects millions of people around the world with over 300 million individuals affected globally.
And is estimated that, rare diseases affect approximately 10% of the population which estimated would put the number of people affected by Rare Diseases in Ghana at a little over 3 million.
Interestingly, many rare diseases are genetic in origin and affect mostly children, thus the stigmatization by other members of society is particularly hurtful.
Unfortunately, the majority of these people have limited access to proper diagnosis, treatment and care due to lack of awareness and resources emphasizing that as a nation, “we must work together to ensure that every person, no matter their medical condition is granted the same level of dignity and access to health care”.
Mr. Mark Atuahene further indicated that, collectively “it is our responsibility to promote the necessary support, resources and care to those living with rare diseases in Ghana”
Therefore, “we must continue to work towards developing strategies that will reduce the burden of rare diseases and promote their early detection”.
Adding “the Ministry of Health wishes to bring to the attention of all persons living in Ghana that our National Health Policy and Strategy for Universal Health Coverage is hinged on three(3) pillars namely:
1. Access- Ensuring that all persons living in Ghana can get healthcare no matter their location, agenda, socioeconomic situation, culture, religion, etc.
2. Quality- That the level of health care rendered at the village for the same health condition should be the same as that given in the cities.
3. Financial Risk Protection- That money should not be a barrier to getting quality healthcare.
The Ministry of Health release also commended the Rare Disease Ghana Initiative for their incredible contribution to the Rare Disease sector in Ghana since their establishment in 2018.
Therefore, recognized and celebrated their remarkable efforts on this Rare Disease Day.
The initiative, Rare Disease Ghana Initiative is a National Non-governmental Advocacy Organization that has been working tirelessly to raise awareness and support for individuals and families affected by Rare diseases in Ghana.
Acknowledging their numerous contributions, he noted that, their efforts has led to the commencement of the Rare Disease Registry to provide essential data for the study of rare diseases in Ghana.
This he admitted can be integrated with already existing health databases to provide comprehensive data and information for health care, including research. .
“Furthermore, Rare Disease Ghana Initiative has worked closely with health care providers to improve diagnosis, treatment and care for individuals with such conditions”.
Moreover, ” we recognize that there is still much work to be done in the area of Rare Diseases and would like to assure the nation that we are committed to addressing the challenges faced by persons living with rare diseases in Ghana”.
Stressing that, “We are currently working on strengthening our health care system to ensure that every one has access to the necessary medical services, including those living with rare diseases”.
“We must work together to create a world where everyone no matter their gender, socioeconomic situation, culture, religion or medical condition has access to proper diagnosis, treatment and care. The Ministry of Health pledges for Rare!”, the release concluded.
February 28 every year is marked as Rare Disease Day which serves as an opportunity to advocate for rare diseases as a human rights priority at local, national and international level as we work towards a more inclusive society.
Source: www.thenewindependentonline.com
