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Statement by the United Nations Independent Expert on the enjoyment of human rights by persons with albinism, Ms. Ikponwosa Ero, upon conclusion of her official visit to Fiji – 27 November to 7 December 2017

Members of the press,
Ladies and gentlemen,

I would like to thank the Government of the Republic of Fiji for the invitation to assess the human rights situation of persons with albinism and to identify good practices and remaining challenges. In particular, I underline in appreciation the Government’s cooperation, openness and constructive engagement prior to and during the visit.

During my visit I held consultations with a wide range of stakeholders, including senior officials of the Executive, Legislature, the Judiciary, the National Human Rights and Anti-Discrimination Commission, and representatives of international organizations, international cooperation actors, civil society organizations, and faith-based organizations. I held meetings at clinics and health centres in the capital, Suva, as well as in the districts of Rakiraki and Nadi. In particular, I visited the skin and eye clinics providing specific attention to persons with albinism, as well as a special school for children with visual impairment in Suva, which also teaches children with albinism. 

I would like to thank persons with albinism and their family members who accepted to meet me and share their experiences. I take this opportunity to also thank the Office of the High Commissioner for Human Rights in Fiji for its support, the UN Resident Coordinator and the UN Country Team for their invaluable contribution and input.

I am  pleased to present to you herein some of my preliminary findings and recommendations, which will be elaborated upon in a more detailed report to be presented in Geneva during the 40th session of the Human Rights Council in March 2019. Therefore this is not an exhaustive account of my observations.

Discourse of issues pertaining to persons with albinism in Fiji is relatively new. It started in 2014 with a preliminary research and awareness-raising initiative led by a specialized dermatologist from Australia, Dr Margot Whitfeld, who was initially working on another skin condition in the country, scabies. This initiative led to a workshop at the Fiji School for the Blind in November 2014, with the participation of healthcare workers, doctors, school teachers and parents of children with albinism. That workshop ultimately led to the creation of the Fiji Albinism Project and its Steering Committee. A year later, in August 2015, the First Fiji Albinism Awareness Symposium was organized in Suva with the support of the Fijian Government and the participation of professionals and practitioners working in the area of education, health and disabilities. The Symposium represented a significant step towards the recognition, by Fijian authorities, of the vulnerability of Fijians with albinism and of the need to effectively address the multiple and serious challenges they face in all walks of life; in particular regarding discrimination and exclusion, their right to the highest attainable standard of physical and mental health, education, employment, housing and social welfare.

Prior to presenting my preliminary observations and findings, an introduction to albinism is necessary given the relative newness of the issue in national consciousness.

Albinism

Albinism is a genetic condition passed on from parent to child. In most cases, both parents must have the gene for a person with albinism to be born. In such a case, there is a 25 percent chance at each pregnancy that the child will have albinism. While there are different types of albinism, the most visible type is that which affects all of the skin, hair and eyes.

Some key implications of albinism include a vision impairment – which varies in each person with albinism – as well as a high vulnerability and potential fatality to skin cancer due to extensive sun exposure without protection.

Prevalence rates of albinism vary worldwide. In Europe and North America, it is reportedly, 1 in 17,000. In Sub Saharan Africa, reported estimates are 1 in 5,000 to 1 in 15,000 with multiple communities reporting higher prevalence rates of 1 in 1,000. Some Aboriginal Communities in North and South America have a reported prevalence of 1 in 125. Reported estimates for the Pacific region, including Fiji, are 1 in 700. This implies that the Pacific region potentially has one of the highest prevalence rates of albinism in the world.

Strengthening awareness and understanding nation-wide

My visit to Fiji is timely. It follows the 2014 and 2015 awareness activities on albinism, the creation of the Fiji Albinism Project, and the ratification, by Fiji this year, of the United Nations Convention on the Rights of Persons with Disabilities. I also note with satisfaction, the first step in incorporating the Convention into domestic law with the ongoing process of a draft bill on the rights of persons with disabilities.

These positive developments offer multiple opportunities for ensuring the full enjoyment of human rights by person with albinism, in the light of their specific needs. I am convinced that my interaction with both governmental and non-governmental representatives on the situation of persons with albinism have sparked a process of introspection and realization of the need to bring this group of the Fijian society “out of the shadows” of obscurity and private suffering and into national consciousness through strategic and widespread advocacy as well as concrete action.

Data collection

A reoccurring and cross-cutting issue is the absence of data on albinism in Fiji. It has been acknowledged by nearly all interlocutors that more needs to be done in the area of data collection, and in particular regarding disaggregated databases. In this context, I was informed about the efforts made by the Fiji Albinism Project to collect data through coordination with local nurses, community assistants and health workers in different parts of the country, as well as through a registration form distributed via the Ministry of Education to school students in the beginning of the school year.

However, to be fully executed and completed, these efforts require additional financial and human resources.

Fiji concluded its most recent national census this year. It is worth mentioning that the census incorporated the set of questions on disability by the Washington Group. However, data collected on disability has not been fully disaggregated per type of disability, and albinism has not been listed as a specific indicator. Similarly, in the most recent survey by the Fiji National Council for Disabled Persons, persons with albinism were not recorded out of the estimated 11,400 persons with disabilities registered in Fiji.

Therefore, persons with albinism and their special needs tend to be “invisible” in Fiji, and the absence of data is a barrier to the development and implementation of targeted policies and initiatives to ensure reasonable accommodation and specialized health care, thus further accentuating their vulnerability.

Systematic collection of disaggregated data, which is structured in a manner reflecting the interplay between different categories and situations, should be a fundamental element in the strategic planning of the Government of Fiji. This would facilitate efforts to design and implement effective policies and programmes in all areas affecting all Fijians without discrimination and/or distinction. The same applies to albinism, for which I urge the Fijian authorities, through relevant governmental agencies and academic institutions, to embark on a systematic collection of information, covering all regions, and to include this in all its databases.  

Public health officials and community rehabilitation assistants can contribute to this exercise through their community outreach activities and house visits in the various subdivisions and zones throughout Fiji. Another possible actor in this regard is the Ministry of Education, through the distribution of questionnaires to all educational institutions and the Fiji Bureau of Statistics, through its household income and expenditure surveys (HIES).

Discrimination and stigma

Barriers to the full enjoyment of human rights by persons with albinism are not only structural but also attitudinal. Misconceptions and misunderstandings about persons with albinism, given the relative rarity of their condition, as well as deeply entrenched traditional and customary beliefs, can explain the persistence of discrimination, stigmatization and isolation of persons with albinism in Fiji. Some of these include the belief that albinism is a communicable disease. Such misconceptions and misbeliefs are particularly present in rural areas and disproportionally affect women and girls with albinism.

During my visit, I received accounts of discrimination in access to and maintenance of employment, disregard for the needs of students with albinism in school settings, leading to early school dropouts, discrimination in access to social welfare, abandonment of children as well as divorces as a result of the birth of children with albinism. I have approached and talked to a number of persons with albinism from various districts in Fiji who shared with me their feeling that society is not embracing them –  and that they have to look out for themselves. For some of them, basic acts such as walking around their communities and participating in social activities can be a particularly difficult endeavour due to frequent and commonly accepted taunts.

Furthermore, discrimination against persons with albinism may often emanate from the perception that these persons should be treated the same way as other persons. This conception of “sameness” often fails to recognize the particular needs of persons with albinism and the need to address them with specific measures and “reasonable accommodation” in order for persons with albinism to achieve substantive equality with others.

To effectively address discrimination and stigma against persons with albinism, there is a need to strengthen awareness through the implementation of wide-scale outreach programmes on albinism and on the specific needs of persons with albinism, in coordination with the Fiji National Council for Disabled Persons and the National Human Rights and Anti-discrimination Commission.  In so doing, it is important to engage with all relevant stakeholders at all levels, including local chiefs and religious representatives, whose role in promoting empathy and respect for difference is crucial.

In addition, training on albinism needs to be provided to all public officials and law enforcement, including the police force, members of the judiciary, teachers, medical personnel and political representatives at all levels.
Awareness-raising and training programmes need to be provided also to persons with albinism in order to strengthen their awareness about their condition and needs, build their confidence and empower them to seek solutions.

“Reasonable accommodation” in all walks of life should be a key principle on which all legislative and policy measures need to be based and implemented in order to effectively address the specific needs of persons with disabilities including persons with albinism.

Finally, a comprehensive nation-wide survey on discrimination, which would also incorporate  information about persons with albinism, needs to be designed and conducted in Fiji. Such a survey would address the root causes of discrimination and stigma and would provide a platform for the views and experiences of persons with albinism to be heard and recorded.

Access to healthcare and adequate medical treatment

Based on the information received during consultations with the Ministry of Health and healthcare providers, specialized dermatological assessments and skin treatment for persons with albinism are provided monthly at the Twomey Tamavua Hospital in Suva, and supported by the Fiji Albinism Project. There is currently only one specialized dermatologist working in collaboration with the medical personnel of this hospital to perform therapeutic interventions against pre-cancerous skin lesions. The clinic also provides sunscreen, and informs patients and their families about prevention techniques against skin cancer. I also had the chance to visit the Twomey Tamavua Hospital and had first-hand experience of the skin care offered to persons with albinism, some of whom travel from areas outside of the capital, Suva, at their own expense to receive this life-saving treatment. Further, I had the opportunity to meet some patients and receive their feedback about the importance of this clinic both as a medical treatment center with its committed health professionals, as well as a place of care and accompaniment, which is fundamental for their well-being.

I welcome this important therapeutic and educational service offered in Twomey Tamavua Hospital and I urge the Government of Fiji to seriously consider supporting and replicating similar services in all four of its geographic divisions. Furthermore, I call upon the Government to take all appropriate measures to expand the network of specialized dermatologists in order to effectively respond to the high medical needs of persons with albinism in Fiji. In this context, I was pleased to know that the Ministry of Health is planning to launch a training programme on dermatology conferred by the Fiji National University in close collaboration with medical institutions abroad, including St Vincent’s Hospital in Sydney, Australia. I expect that all appropriate measures be undertaken to ensure the sustainability of this programme with provision of sufficient resources, including human resources.

Furthermore, skin damage prevention initiatives and information campaigns should be designed and implemented in Fiji, and in particular in rural and remote areas of the country. These areas should be a priority given that customary beliefs about appropriate social behaviour prohibit persons with albinism from wearing hats, sunglasses and protective clothing. Particular attention should be placed on children with albinism, because it is proven that early preventive interventions minimize the negative effects of sun exposure and build resilience against any deterioration to vision impairment.

Another challenge is the treatment of skin cancer, which is reportedly, limited in Fiji, due to the lack of specialized treatment in the country, including radiotherapy. I was made aware that the most serious cases of skin cancer are often referred to hospitals and clinics abroad. Vulnerability to skin cancer is one of the most serious health implications of albinism and remains a life-threatening condition for most persons with albinism, in particular in regions with frequent exposure to sunlight.

There is a need for the Government to implement, including through international partnerships, training programmes for healthcare professionals in this particular area, which will address early identification and treatment, including through radiotherapy and surgical interventions. It is important to also ensure that skin cancer treatment is affordable and accessible.  

I also visited the one-day clinic for eye checks and treatment for persons with albinism organized by the Pacific Eye Institute in Suva. This is another good practice that has been established in coordination with the Fiji Albinism Project. As per current practice, the Pacific Eye Institute organizes monthly clinics for persons with albinism, mainly to prescribe glasses to them, address varying types and levels of refractive errors, and most often to address astigmatism.  Apart from the Pacific Eye Institute, similar eye clinics take place also in the divisional hospitals in Lautoka and Lambasa. The Pacific Eye institute currently receives around 50 persons with albinism per year, most of them referred by the Fiji Albinism Project team following identification of those persons with albinism in need of such services. Nevertheless, the cost of prescribed glasses is not covered by the Government and it varies between USD 100 and USD 140, which is unaffordable for many persons with albinism in Fiji,  taking into account their poor economic situation, mainly due to discrimination and exclusion from the labour market and/or social welfare.

The challenge of being a person with albinism when coupled with a difficult socio-economic situation and accumulated experiences of discrimination and stigma may take a toll on the life of persons with albinism. I noted with concern the absence of specialized psycho-social support aimed at providing a space for expression, building of self-confidence and empowerment.

Integrated approaches to medical treatment as well as psycho-social support of persons with albinism need to be developed and implemented in Fiji, with the view to strengthening efficiency and responsiveness, as well as maximizing the impact of currently-provided health care services.

I invite the Government of Fiji to explore the possibility of creating medical facilities, or focal points within existing healthcare centres that would provide medical evaluations and treatment for both skin and eye conditions for persons with albinism and to ensure the availability of adequate financial and human resources.

Furthermore, I recommend that  existing dermatology and eye clinics performed in the various hospital subdivisions in Fiji, include dermatological and eye treatment for persons with albinism and that existing community health outreach programmes include information about albinism and specific needs of persons with albinism. I would like to underscore that in the design and implementation of such programmes, the direct informed participation of health professionals, civil society, including persons with albinism is of critical importance and should be actively sought.

Lack of protective and adaptive material as well as treatment equipment

One major challenge I identified during my visit is the absence of sustainable provision of material and equipment to effectively respond to the needs of persons with albinism, including their much-needed medical checks and treatment. I have observed that all supportive material and treatment equipment tend to be a one-off donation by civil society and private actors. This is an issue of great concern given that any interruption of medical treatment due to lack of appropriate material may have harmful and irreversible consequences for the health of persons with albinism.

I am particularly concerned at the absence of programmes and investment initiatives led by the Government of Fiji to ensure the availability of liquid nitrogen which is fundamental for the skin treatment of persons, and in particular, the dispensers with their pressure pump through which the liquid nitrogen is administered to the patient. I was also made aware of the high cost of these equipment, which, until today, have been donated by the St Vincent’s Hospital Sydney, without any plan for replacement if damaged as a result of their frequent use. In addition, St Vincent’s Hospital has donated a total of 3,000 sunscreens, in the last two years, some of which appear to have expired.

Furthermore, the provision of eyeglasses and other devices for vision correction and of sunglasses is not covered by government subsidies and support material in classrooms, such as magnifying lenses, as well as hats, are provided only on an ad hoc basis through civil society programmes.

I strongly encourage the Government of Fiji, through relevant ministries, to prioritize sustainable funding for all protective and adaptive material and treatment equipment, as well as for all necessary interventions with the view to safeguarding the principle of “reasonable accommodation” in all areas affecting persons with albinism, including at home, in school and at the work place.

In addition, I urge the Government to include sunscreens on the list of essential medicines and to consider launching the local production of sunscreen in order to achieve cost efficiencies and availability of the product. I strongly believe that local production of sunscreen will also be more likely to address local needs, including those determined, for example, by environmental particularities in Fiji, such as the high average levels of humidity among others.

Right to Education

I note the recent review of the Policy on Special and Inclusive Education, which aims, to collect information on students with disabilities in all schools of the country, and provide support to all schools, -- both special education and mainstream, -- in order to enable adequate staffing, teaching resources, and infrastructure to support the inclusion of students with disabilities. In addition, the Policy intends to strengthen support for vocational training programmes in special education schools and in vocational training centres and to develop and implement educational outreach programmes in local communities. I commend the Government of Fiji for these efforts as well as for the financial support provided to those mainstream schools who accept students with disabilities and the distribution in schools of information material and awareness-raising on issues related to disability.

In context of the recent ratification of the UN convention on the rights of persons with disabilities, I call on the Government to include the issue of albinism in education policies and programmes and to ensure that children with albinism are well-integrated in mainstream schools particularly through the provision of reasonable accommodation.

According to a database developed by the Ministry of Education there are 1,289 students with disabilities in the school system. However, this database is not disaggregated per type of disability and it does not record students with albinism.

In Suva, I had the opportunity to visit the School for the Blind, a primary school run by the Fijian Society for the Blind. I met with the school management, teachers, parents and children with albinism enrolled in this school. I noted with concern that all teaching and protection material for children with albinism such as large-print textbooks, hats and sunscreens are provided only through private donations. I also observed that students with albinism, who have low vision, which is often a relatively stable condition, are generally taught braille without full access to devices such as monoculars, which could facilitate their integration into mainstream secondary education.

The Government should step up efforts to ensure that all schools in the country are provided with appropriate infrastructure and material in order to accommodate the special needs of all students, including those living with albinism. Training and community outreach programmes should be designed and implemented in an effort to effectively address any barriers including misbeliefs and bullying that constitute impediments to the full realization of the right to education by persons with albinism.

Participation and representation

Currently, and in the last three years, the Fiji Albinism Project is the only platform through which persons with albinism can be informed and trained about their health condition as well as receive ad hoc therapeutic treatment for their skin and eyes, mostly from private donations. The Project has actively engaged with government agencies and medical personnel and has reached out to local communities through awareness-raising activities and material support to clinics and schools.

However, the project’s geographic scope is limited to Suva and it lacks resources due to the absence of institutional support. It is important that the Government of Fiji embrace this ground-breaking initiative and provide it with sufficient support in order to ensure its expansion and sustainability as a key specialized partner of governmental agencies in their effort to provide direct services to persons with disabilities and to implement awareness-raising programmes.

Furthermore, as a result of the recent ratification of the Convention on the rights of persons with disabilities, human rights organizations in Fiji, including those working for the rights of persons with disabilities, need to include issues of albinism in their work. They also need to engage in a dialogue with the Government to ensure that albinism is integrated in  future national strategies - including action plans and policies - on the rights of persons with disabilities.. Existing institutional platforms of coordination between the Government and civil society, such as the Fiji National Council for Disabled Persons and existing consultation forums at the local government level, can also play an important role in facilitating this dialogue, and contributing to the development of research programmes and activities on albinism.

One of the cornerstones of any democratic and inclusive society in which no one is left behind is the active presence of civil society actors. Persons with albinism and their families have to speak for and organize themselves as a civil society organization to lead action for change.

I recommend that the Government takes all appropriate measures to facilitate and support such initiatives in order to ensure that the voices of persons with albinism are heard in all areas affecting them.

One bright example of ad hoc action in this area is a self-help group of parents of children with albinism, which functions as a platform for information and advice. During my exchanges with some members of this group, I observed the empowering effect of this initiative, not only for mothers, but most importantly for their children with albinism. Formal registration as an association or non-governmental organization will give such groups the institutional framework and backing to operate and to seek support, thus increasing their capacity to reach out to other families whose members have albinism.

Finally, more needs to be done in the area of representation of persons with albinism in the public service and the different levels of government. The low vision or skin condition of persons with albinism should not be a disqualifying factor and a reason for exclusion and discrimination. During my visit, I received only some anecdotal information regarding representation of persons with albinism in public office in Fiji.

International Cooperation

To date, issues of albinism have not been part of cooperation and development programmes and overseas direct aid to Fiji.

I strongly encourage  international cooperation actors in Fiji to work in close coordination and collaboration with the Government in order to ensure that albinism is integrated in their programmatic planning and direct aid activities in all areas, including health, education and employment.

In addition, within the framework of the 2030 Agenda for Sustainable Development, it is important that the responses to issues faced by persons with albinism are fully integrated into United Nations programming in Fiji, through coordination among its various agencies and programmes. These issues should also be reported in the context of Fiji’s reporting commitments to international human rights mechanisms, including United Nations treaty bodies.

Members of the press,
Ladies and gentlemen,

In the last four years, albinism and the promotion and protection of the human rights of persons with albinism have been progressively introduced into Fiji as an issue for further reflection and action. And this, is mainly thanks to the committed advocacy and intervention by civil society actors with experience in the area of health.

It is now the time to step up efforts in order to provide to these and future initiatives, the necessary institutional support and sufficient resources in order to ensure that albinism is an integral part of future national policies and programmes. The recent ratification by the Government of the UN Convention on the rights persons with disabilities and the current discussion in Parliament of the draft bill on disability create opportunities for further dialogue and measures inclusive of persons with albinism.

Thank you.