Policymakers must prioritise healthcare support for rare disease patients - Director

The Rare Disease Ghana Initiative (RDGI), a Non-Governmental Organisation, has launched the Ghana Rare Disease Family Network with a call on policymakers to prioritise healthcare support for people living with those diseases.

Rare diseases include genetic and metabolic disorders, with the treatment involving novel medications, and therapies, which vary widely depending upon the disease.

Mr Samuel Agyei Wiafe, a Clinical Psychologist and the Executive Director of the RDGI, made the call in an interview with journalists at the organisation’s maiden ‘Rare Family Meetup’ 2022, at the University of Ghana Guest Centre in Accra.

It is an annual meeting and capacity building for rare disease advocates, patients and caregivers in Ghana, which affords families to interact and share experiences in their journey.

Mr Wiafe said those diseases had been neglected in the health system and there was not much effort being made to support victims and their families hence the establishment of the RDGI five years ago to step in.

“Through the formation of the organisation many families who live with patients with various forms of diseases have been found but that was not enough, rather there was the need for tangible support, which the Family Network will take upon itself to get closer to the patients and provide assistance,” he stated.

The Network would also be a mouthpiece for the rare disease community for people to understand their existence in the country to aid in planning and prioritising healthcare and social systems accordingly.

On data, Mr Wiafe said the organisation recorded close to 100 different rare diseases adding: “I must say, for the records, that there are about 7,000 rare diseases known globally, but we have found about hundred in Ghana, and we believe there are more in the country.”

He said for many of such ailments had no approved treatment with many now learning about them through research and trying to find treatment.

“In total only five percent of the diseases have treatment and for those that have treatment many of them could not access it in our part of the world; the treatment is only available in the West, which turn to have heavy financial burden on families.”

“As a country we do not have a definition for rare diseases that would trigger policies and interventions in the space. And so it is difficult to even have that engagement or conversation regarding the disease on the National Health Insurance Scheme,” Mr Wiafe stated.

“We have seen the National Health Policy; we have seen that it is inclusive; we are hoping that it will continue to include and have room for persons living with rare diseases.”

“Also, part of the policy has items targeting sustainable financing and so we are hoping to engage with government to map out what possible avenue we could get funding for the care of the diseases”

That would help the patients and their families to live their free life and bring their children out and not feel stigmatized, Mr Wiafe said.

“Many of the diseases that are coming are genetic and so stigmatising them can be very messy.”

He appealed to policymakers to continue to engage with the organisation to find solution to the diseases in Ghana.