Sharecare Ghana: Support for people with neuroimmunologic disorders in Ghana

Reprinted with permission from The Accra Daily Mail

Facing the challenges of autoimmune diseases in Ghana…
Only 4 Doctors Available
By Kofi Agyepong, The Accra Daily Mail, June 20, 2008

In a country with a population of over twenty million people, there are only four doctors qualified in the field of neurology to confront such a vast area of medicine; this came to light yesterday during the launch of an advocacy NGO – Sharecare Ghana – for people with autoimmune conditions.
The organization has attained international recognition and is affiliated to the Transverse Myelitis Association in the US.

In Ghana, the Noguchi Memorial Institute for Medical Research (NMIMR) has signalled its willingness to begin a study into autoimmune diseases and the College of Physicians and Surgeons has also agreed to lend support to the organization’s efforts.

Speaking at the launch, the Coordinator of Sharecare Ghana, Nana Yaa Agyeman said the aim of the organization is to “reach out to people who have had or are living with long-term illnesses and want to share their experiences, expectations and  treatment options”.

“One of our objectives is to campaign towards the inclusion of autoimmune conditions in the National Health Insurance Scheme…At the moment, even though some of us pay our premiums, we still have to pay for expensive tests and medicines,” she said.

Sharecare, she said, is seeking research, better diagnostics and treatment in the area of autoimmune conditions that has been largely ignored in the country. “For example, MRI scans are vital in monitoring many autoimmune conditions and yet, there is only one functioning MRI scanner in Ghana,” she said.

Nana Yaa Agyeman said the unfortunate situation in the country is that some doctors do not accept that Africans are now getting these disorders. “This is unfortunate because although they were traditionally classified as rare, the diseases have actually been found to be not so uncommon within our society,” she said.

Those living with these illnesses, she said, are not alone. “If you are lonely, this is your chance to meet people who understand and can empathize.”

The National Co-ordinator revealed that the organization has a website through which those affected can share their experiences, expectations and treatment options.  “If you log on to www.sharecare.com, you can read other people’s experiences and also share yours,” she said.

In an address read by Alhaji L. M. Muniru, Deputy Director of Policy Planning, Monitoring and Evaluation at the Ministry of Health, for the Minister of Health, Major (Rtd) Courage Quashigah, the Minister said even though there is no separate policy and programme specific to autoimmune diseases, it can be said that government’s policy on autoimmune disorders falls within the overall policy, goals and strategies of the health sector.

“It is government’s policy to develop systems to reduce the burden of disease, mortality and disability suffered by those afflicted with the disorders and to reduce inequality in access to health and health services,” he said.

Government, he said, cannot achieve all the health policies on its own due to the complex and multifaceted nature of the disorders. Major Quashigah called for private participation in financing health care, since according to him, “the cost of financing health care especially chronic disorders such as autoimmune disorders is very huge”.

He said the government would continue to improve access to health services by expanding health facilities throughout the country. Autoimmune diseases and diseases of the central nervous system often don’t show a clear pattern of symptoms and are therefore difficult to diagnose.
The symptoms may include some or all of the following: numbness, vomiting, loss of body co-ordination and muscular spasms, vision impairment or loss, fatigue, tingling sensation, weight changes, depression, constipation, diarrhea and others.

Autoimmune diseases include the following: Rheumatoid Arthritis, Acute Disseminated Encephalomyelitis (ADEM), Multiple Sclerosis (MS), Transverse Myelitis, Neuromyelitis Optica (Devic’s Disease), Lupus and others. Ghana’s healthcare delivery system is more geared towards the treatment of diseases like malaria, HIV/AIDS, the five killer diseases in children with very little attention being paid to other equally debilitating ailments.

There are practically only two practicing neurologist in the country, whose work load gets heavier by the day as a result of the rising numbers of people being diagnosed with autoimmune diseases.
Presentations were made by Drs. Albert Akpalu (Neurologist) and Ida Kuwornu (Internal Medicine) both of Korle-Bu Teaching Hospital on the definition and clinical manifestations of autoimmune diseases and Dr. Michael Ofori (Immunologist, Noguchi Memorial Institute for Medical Research) spoke on the “Scientific background to autoimmune diseases”.

Professor Paul Nyame, Rector of the Ghana College of Physicians and Surgeons, who chaired the launch called for the strengthening of the National Health Insurance Scheme. He expressed the regret that it had been unduly politicized and called on Ghanaians to support it to make it work so that the most vulnerable in society could enjoy quality medical and healthcare.

The function was attended by sufferers of autoimmune diseases, their families, members of the medical profession, the media and related NGOs.

The Accra Daily Mail
Editorial, June 20, 2008

What are you suffering from?
Malaria, HIV/AIDS, tuberculosis, and the five or six childhood killer diseases are among a host of popular ailments that receive the bulk of many countries’ health care delivery efforts, but are they the only diseases that afflict and eventually kill people? The answer is a deafening NO!

Yesterday an advocacy group, Sharecare Ghana was launched at the Ghana College of Physicians and Surgeons to highlight autoimmune diseases in Ghana.

It is an area that has received scant attention from the Ghanaian medical community, including the policy formulators at the Ministry of Health and the clinicians themselves, but there is evidence that autoimmune conditions are on the rise and may probably account for a large number of ailments that present themselves as the popular ones mentioned above.

The presentations made at the launch by a number of medical experts pointed clearly to a very troubling and troublesome medical area that needs more support, more research, more understanding and certainly a national policy on treatment and care. For a country of over twenty million people, there are only four neurologists! Incredible! Until fairly recently, there was no MRI scan in the country. Now there is one at Korle Bu to serve a nation of 20 million plus people.

What Sharecare Ghana has started needs our support. We are pleased that the Noguchi Medical Research Institute has agreed in principle to conduct research into the area and the Ghana College of Physicians and Surgeons has also signalled its support.

In his launching address, the Minister of Health did also give the indication that it is the government’s policy to make Ghanaians healthy to live long productive lives and therefore would support efforts of groups like Sharecare Ghana. That is welcome news, because that feverish feeling you may be thinking is malaria, could be the beginning of a long and debilitating autoimmune condition...