Report from the Chair
Contributed by Richard Walker, MD
Consultant Physician, Northumbria Healthcare NHS Foundation Trust
North Shields, United Kingdom
Chair, Task Force on Africa
With the demographic transition more people in sub-Saharan Africa (SSA) are surviving to old age and there has been a dramatic increase in the contribution of non-communicable disease (NCD) to both mortality and morbidity. Neurodegenerative conditions, such as Parkinson’s disease (PD), are becoming more common but knowledge about such conditions in this area is very limited (Okubadejo et al 2006).
It had been thought that PD was rare in SSA but recent research from Tanzania has demonstrated higher rates of age-adjusted prevalence than previously described, though not has high as in western countries (Dotchin et al 2008). Most of the individuals identified in this house-to-house prevalence study had not been diagnosed and were not even aware of PD as a medical condition. Lack of diagnosis, and therefore treatment, is likely to have led to earlier mortality which is likely to be the main reason for the lower prevalence rates. However, it was demonstrated that individuals with no knowledge of PD could be identified from a survey including 6 questions (in fact 2 would have identified most). This cohort has subsequently been successfully treated with physiotherapy cueing techniques (Rochester et al 2010) and then with Levodopa (Dotchin et al 2011), and in some individuals this has been “life changing”.
We estimate from our figures that, taking into account other low and middle income countries, up to half the people in the world with PD are not diagnosed, and therefore not treated. There is a great lack of awareness about PD among the public, and also among healthcare professionals and a lot of the features are felt to be “due to old age” (Mshana et al 2011). Even if people are diagnosed there is still a major issue about the availability, affordability and sustainability of drug treatment.
The SSA interest group of the MDS was established in January 2009 and in June 2012 the African Task Force (ATF) was created. Our main aims are to increase awareness, and training, in relation to PD in Africa, and promote the availability of affordable, and sustainable, drug treatment.
Nurse Specialist Course in Tanzania
Previous movement disorder courses have been held in South Africa and Mali, supported by MDS. In December 2012 we held a PD nurse specialist (PDNS) course for east Africa in Moshi, northern Tanzania. This was jointly funded by MDS and the World Federation of Neurology (WFN) and included over 20 participants from east Africa including Ethiopia (2), Rwanda (3), Uganda (1), Kenya (4) and Tanzania. The Tanzanian attendees also included occupational therapists (OTs) and physiotherapists (PTs) and we also had 2 nurses from Nigeria. The one week course was very successful and all of those who attended the course have been given a PDNS mentor from the UK who will maintain email contact and be available for any questions. Individuals selected to go on the course were mainly from neurology departments whereby they would be assured of looking after PD patients on their return and they will write a report about the numbers of patients, and their treatment, after 6 months. Based on the success of the east African course we are planning to run a course for Anglophone west Africa in Accra, Ghana in September 2013 and plan to run further regional courses in Francophone west Africa, central Africa and southern Africa in the future.
There is a great lack of trained neurologists in many countries in SSA (Bower et al 2005). At the same time as the PDNS course in Accra we will be running a 3 day course for non-specialist doctors, mainly from Ghana, but also from other Anglophone west African countries. Again, if this course is successful we plan to run it in other African regions.
To back up education for health professionals and also patients and carers, we will be modifying information about PD to make it appropriate for people in SSA. Parkinson’s UK have agreed for any of their supporting information to be used as necessary. Initially the information will be produced in English but will subsequently be translated into local languages, eg Swahili, as necessary. MDS is also supporting this provision of information which we hope will have a major impact with the increasing availability of reliable Internet throughout Africa.
Pilot Project in Nigeria
In relation to drug availability, we are conducting a pilot project in Nigeria, overseen by Dr. Njide Okubadejo, to provide patients, who otherwise could not afford treatment, with access to drugs. These have been donated by Teva, Canada and this has been facilitated by Dr. Mark Guttman. This is initially a 2-year pilot and we hope that, if it is successful, this might be repeated longer term in Nigeria, and also in other sites. A key problem will be making PD drugs affordable in SSA but we hope that by demonstrating the need, and potential market, pharmaceutical companies will make more effort to make affordable drugs available.
Plans for the Future
Looking to the future one of the ways of establishing evidence of this need is by the collection of more data. We are keen to set up a multi-centre study to look at both the phenotype, and genotype, of PD and also to look longitudinally at response to treatment such that efforts to increase availability of treatment to individuals will run hand in hand with robust evaluation, including health economics. Ten years ago there was a universal movement to make highly active anti-retroviral drugs available throughout SSA for HIV patients, and this has been very successful. Although PD is not as high profile drugs can have a major impact on individuals’ quality of life.
Anyone who is interested in finding out more about, and potentially becoming involved with, the work of the ATF can contact me or any of the other members of the Committee. We aim to keep people updated on our initiatives via the MDS website.
Bower JH, Zenebe G. Neurologic services in the nations of Africa. Neurology 64 (3), 412 – 415 (2005)
Dotchin CL, Msuya O, Kissima J, Massawe J, Mhina A, Moshi A, Aris E, Jusabani A, Whiting D, Masuki G, Walker RW. The prevalence of Parkinson’s disease in rural Tanzania. Movement Disorders 2008 23 (11), 1567-1572
Dotchin C, Jusabani A, Walker R. Three year follow up of levodopa treatment in a prevalent cohort of patients with Parkinson’s disease in Hai, Tanzania. Journal of Neurology 2011; 258 (9): 1649-56 JOON-D-10-01161R2 DOI 10.1007/s00415-011-5988-y PMID: 21442463 Impact factor 3.853
Mshana G, Dotchin CL, Walker RW. “We call it the shaking illness”: Perceptions and experiences of Parkinson’s disease in rural northern Tanzania. BMC Public Health. 2011, Apr 8; 11: 219 Impact factor 2.22
Okubadejo NU, Bower JH, Rocca WA, Maraganore DM. Parkinson’s disease in Africa: A systematic review of epidemiological and genetic studies. Movement Disorders. 21 (12), 2150 – 2156 (2006)
Rochester L, Rafferty D, Dotchin C, Msuya O, Minde V, Walker R. Rehabilitation in Parkinson’s Disease: The effect of cueing therapy on single and dual-task gait in a drug naïve population in the Hai district of northern Tanzania. Movement Disorders 2010 25 (7) 906-911