Persons with albinism call for urgent action following tragic loss to skin cancer

Staff Reporter

In a devastating turn of events, the community of persons with albinism is calling for immediate action after the loss of one of their own to skin cancer. The tragic incident has reignited concerns about the significant health risks faced by individuals with this condition and the urgent need for better education, support, and prevention measures.

The late Tete Jena as she was affectionately known, passed away after a courageous battle with skin cancer for two years. Skin cancer is a condition that disproportionately affects individuals with albinism. Tete Jena who served as an inspiration to the community. During her battle with cancer, she had already lost her eyesight.

Albinism, a genetic condition characterized by the absence or reduction of melanin, not only results in a lack of pigmentation in the skin, hair, and eyes but also places individuals at a higher risk of developing skin cancer due to their increased sensitivity to ultraviolet (UV) radiation.

“Skin cancer has claimed another, this is Tete Jena, she passed away yesterday. She fought skin cancer for 2 years and lost her eyes…tiri kupera (we are dying) one by one because of a treatable disease. our health care system is now accelerant to early graves,” said Marvellous Tshuma the Noble Hands Zimbabwe Trust Communications Director.

Faced with this tragic loss, persons with albinism are rallying together to demand urgent action and highlight the pressing needs of their community. Their primary goal is to ensure that no more lives are lost due to preventable causes such as skin cancer.

Among their key demands is the necessity for enhanced education and awareness programs to provide vital information about preventative measures. Efforts to educate both individuals with albinism and the larger society about the importance of sun protection, such as the use of sunscreen, wearing protective clothing, and seeking shade during peak hours, are crucial.

Additionally, persons with albinism are calling for increased access to healthcare specifically tailored to meet their unique needs. This includes regular check-ups, early detection screenings, and subsidized or free treatments for any suspected or diagnosed cases of skin cancer. Speaking in an interview with this reporter Tshuma said that there is a need for the government to initiate programs that educate the public about albinism while assisting persons with albinism.

“Albinism is a natural condition where one is born with little or no melanin in the eyes, skin, and hair. This lack of melanin makes us more susceptible to developing skin cancer, especially against the backdrop of climate change, poor access to skin care needs (sunscreen, lotions, lip balms, protective clothing), lack of relevant knowledge on how to manage the skin and most importantly poor health care delivery system which has impacted us negatively in dealing with skin cancers.

“Skin cancer within the albino community has been treated or viewed as a sign of bad omen, or sign of an evil spirit that in remote communities’ skin cancer patient with albinism are not taken to hospital, but to traditional healers or religious sects for cleansing or treatment using herbs. This is really increasing the risk of the patient dying as 70% of the cases we have received so far will be presented when the patient is now at advanced stages of the disease and they often die during treatment. Some communities actually believe that it is normal for a person with albinism to have cancer and when the wound starts to septic the family starts to prosper as all their problems will be consumed by the person with albinism in their family.

“More so we need to have deliberate radio programs so that information about skin cancer reaches a wider audience to save lives. We are trying as the Noble Hands Zimbabwe Trust to educate people with albinism about the condition, and the public, but it is not enough. Stakeholders in the media must join hands with us to fight this disease.

“The government can launch awareness campaigns to educate the public about albinism and the importance of protecting individuals with albinism from the sun. These campaigns can be carried out through media channels including television, radio, and social media. the government can provide free or low-cost sunscreen to individuals with albinism, especially in rural areas where access to sunscreen may be limited. This can be done through government-run health-care facilities, or through partnerships with NGOs and private companies.

“They can also establish policies that promote sun safety in public spaces, such as schools, parks, and other public areas. this can include providing shaded areas, encouraging the use of protective clothing, and promoting the use of sunscreen. The government can train healthcare professionals about albinism and the importance of providing proper care and protection to individuals with albinism. This can include training on how to diagnose and treat skin cancer, as well as how to provide appropriate sun protection,” she said.

To support their cause, the community is organizing a series of public awareness campaigns, fundraisers, and dialogues with healthcare professionals, policymakers, and influential figures. Through these efforts, they aim to mobilize resources and generate widespread support for the urgent action required.

“…since we began the Albinism Konnect Cancer Initiative we have discovered that we opened a can of worms. There are so many underlying problems that have existed since immemorial about albinism and skin cancer. There is a need for the Ministry of Health and Child Care, OPDs specialising in people with albinism to join hands to conduct revolving health awareness campaigns, screening, and also capacity-building health initiatives to know how to manage albinism so people with albinism themselves have adequate knowledge about the condition. There is also the need to have continuous surveillance of high-risk communities so that these cancers are dealt with easily in their early stages. the system must be centralised up to clinic level,” said Tshuma.

In response to this tragic incident and the subsequent calls for action, medical professionals, advocacy organizations, and lawmakers have expressed their commitment to addressing the pressing concerns of persons with albinism. They acknowledge the need for immediate and comprehensive changes in healthcare policies, education systems, and public perception surrounding albinism.

The loss of Tete Jena has served as a wake-up call to the urgent need for increased support and understanding for persons with albinism. It has created a sense of unity within the community, as they come together to honor the memory of their beloved mother and work towards ensuring a brighter future for all individuals with albinism.

The Sustainable Development Goals (SDG-3) with regard to persons with albinism reminds us of the need to ensure good health while promoting the well-being of all at all ages. this includes access to quality healthcare, specialised medical services, and the prevention and treatment of conditions such as skin cancer, visual impairments, and other related health issues. SDG-10 further highlights that for persons with albinism, there is a need for reduced inequalities. this means addressing discrimination, stigma, and social exclusion, promoting their social and economic inclusion, and providing equal access to education, employment, and healthcare services.

The tragedy of losing someone like Tete Jena has also deeply affected the entire community. However, their shared grief has transformed into a collective determination to bring about positive change. Through their united voices, persons with albinism are reminding society that everyone deserves to live a fulfilling life, regardless of their genetic condition.

Anyway Rugube a devoted human rights advocate, emphasised, “We can all contribute to a world where persons with albinism feel supported, understood, and valued. It is up to each one of us to educate ourselves, challenge stereotypes, and advocate for our rights. Together, we can create a more inclusive and compassionate society.

In memory of Tete Jena, the fight for better healthcare, increased awareness, and improved societal acceptance continues. It is a testament to the resilience and strength of the community, as they work tirelessly to ensure that no more lives are lost due to preventable causes such as skin cancer.