Albinism Foundation pleads case at budget hearings

May 22, 2014 2:49 pm
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Albinism is a genetic condition that results in a lack of pigmentation in the skin hair and eyes causing vulnerability to sun exposure and bright light.   Photo/ FILE
Albinism is a genetic condition that results in a lack of pigmentation in the skin hair and eyes causing vulnerability to sun exposure and bright light. Photo/ FILE

, NAIROBI, Kenya, May 22 – The Albinism Foundation of East Africa (AFEA) on Thursday requested for more than Sh800 million in the 2014/15 financial year in order to tackle problems faced by persons living with albinism.

They presented their petition at public hearings on the proposed budget for 2014/2015 at the Kenyatta International Convention Centre.

The foundation received Sh100m each in the 2012/2013 and 2013/2014 financial years.

A representative from Kituo Cha Sheria William Thuku on behalf of AFEA requested for additional funds saying; “Given an estimated population of approximately 800,000 people living with albinism and each requires one tube of sunscreen per month which currently costs Sh1,600, we are requesting Sh153 million.”

“There are no radio therapy machines in western, coast and eastern regions, we need an additional four radio therapy machines at an approximate cost of Sh680 million.”

Additionally, AFEA expressed concern over the delays when funds are channelled through the National Council for People with Disabilities.

“We have had delays in accessing the funding. We are not convinced that the persons living with albinism have been getting the requisite services because their funding has been channelled through the National Council for People with Disabilities”

“So if we are to get any funding for the next financial year we feel that the Ministry of Health is in the best position to procure and distribute sunscreen since it has the capacity, and the infrastructure and the national outreach.”

Sh1.6 million of the requested funds is to be allocated to purchasing reading boxes for an estimated 800 pupils living with albinism who suffer from short sightedness at a cost of Sh2,000 per reading box.

The constant bending to read and write due to poor eye sight leads to them straining their spinal cords. The organizations records show that 95 percent of persons living with albinism are youths.

They also requested for a fresh census to clarify the growing population of persons living with albinism to be carried out by the Bureau of statistics.

Chairman of the Budget and Appropriations Committee Mutava Musyimi who presided over the public hearings said that the society of people living with albinism is well represented in government through leaders with the condition and that their requests will be looked into.

Albinism is a genetic condition that results in a lack of pigmentation in the skin hair and eyes causing vulnerability to sun exposure and bright light.

Persons with albinism are at high risk of developing skin cancer and deteriorated eyesight without appropriate preventive care.

Even though individuals with albinism lead healthy and productive lives in many parts of the world, albinism has effectively become a death sentence for many Kenyans because of inadequate preventive and curative care for individuals at risk for cancer.

Their lifespan has been reduced to around 40 years.

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