The gift of sight

The cornea is the thin clear layer of tissue in front of the pupil and iris. It is a vital protective covering and focusing element of the eye. Its function is to refract light onto the retina. Due to injury, disease and other certain conditions, vision will become drastically reduced, and sight may be lost.

With the advance of campaigns using internet channels like informational websites, social media platforms like Facebook, school campaigns and interviews on radio and television with doctors and transplant recipients, the message of donation awareness has been growing. Due to advancing medical technology and techniques over the last years, a large amount of people have successfully benefited from corneal transplants and have the opportunity to lead quality lives post surgery.

Instrumental in the success of cornea transplants was the establishment of eye banks. These are organisations located throughout the world to co-ordinate the distribution of donated corneas to surgeons, as well as providing eyes for research.

Corneal transplant has been successfully performed in South Africa for 30 years, and from 1991 to 2015 over 3 500 transplants were performed through the Gauteng Cornea and Eye Bank.

Tissue procurement

Due to the lack of supply and demand of corneas in South Africa, Ophthalmologists’ are forced to import corneas from abroad at exorbitant costs due to exchange rates. These costs are passed on and dramatically impact the recipients’ expenses. Another factor influencing transplant availability is the difference between medical aid members, who are covered most times, and those not on any assisted plan, who then cannot afford this sight-saving procedure.

Waiting lists

Nationally there are currently thousands of people waiting for available corneas. In Gauteng alone there are 700 people on the waiting lists, 100 of whom are children under 12 years of age.

Pre-requisites for corneal transplant

Despite many grafts taking place each year in South Africa, the need is ever increasing and unfortunately, never satisfied. To date, the use of artificial materials for corneal transplants has been unsuccessful. As a result, patients awaiting corneal transplants depend solely on the graft of donated tissue. Recipients are usually any person between the ages of 10 and 65, up to 70 years in certain cases. Children and even babies on occasion require transplants for a number of reasons too. Cataracts and poor eyesight do not prevent corneal surgery; however previous laser surgery to the eye and infections such as TB and HIV as well as lymphoma and leukemia are unfortunately contra-indications for donation. Transplants may also be necessary because of corneal failure due to hereditary problems and scarring, as well as infections. Certain aging processes also affect the clarity and health of the cornea.

Corneal donation is anonymous and eye banks generally encourage recipients to write a letter to the donor family thanking them for having it in their hearts to consent to donation.

Complexities

In 2003 the NHA (National Health Act) was published. Later the act was found to be flawed in a number of ways, with regulations dealing with donation and transplant not being compatible. Transplant personal were forced to refer back to the old Human Tissue Act of 1981.

Since government mortuaries changed hands from the South African Police Services (SAPS) to the department of health in 2006, there has been a dire shortage of donors.

Under the SAPS, government mortuaries gave eye banks confidential information about the families of the deceased who could be approached for donation.

Under the department of health, the names are not released due to patient confidentiality, and while the policy protects the donor identity, it adversely affects the number of corneas suitable for donation.

Mortuaries are not in any position to pass on any information, despite being one of the prime sources of potential donors.

The hope was that once the department of health took over the mortuaries, there would be even better support for the work of eye and Tissue Banks, but alas — it was to the detriment of all, and patients in particular.

So much more needs to be done to bridge this gap. The main benefit will be to increase the number of people consenting to donation.

Some of the primary contributors for this drastic decline in donors are:

• The lack of legislative and government support;
• The protection of the individual’s privacy and right to choose;
• Culture and tradition;
• Lack of education; and
• High prevalence of hospital infections and transmittable diseases such as HIV and hepatitis.

Success story: Thandiswe Mathews’ testimonial

I was born with bilateral keratoconus, but my cornea donors blessed me with the gift of hope and the wonderful possibility of better vision. Being a cornea recipient is not merely being given the opportunity for improved sight, it’s really being given the chance to be more — to not live in fear despair and deficiency. Personally it also reminds me that despite all our apparent and superficial differences, we are one. Eighteen years ago a family in their time of loss and mourning made a decision that has made all the difference in my life. At 15 years old, living in fear of blindness and being less than I know I could be, my donors saved and blessed my life. For that I am eternally grateful.

There is light at the end of the tunnel due to the ODF (Organ Donor Foundation) and the Center for Tissue Engineering launching initiatives around Organ Donor Month which commences August 2016. These will have tremendous benefits both for ODF and for invited participants, namely all tissue banks.

The common purpose and goals of this initiative/project will be to extend the concept of tissue donation to a wider audience and into untapped areas by imparting knowledge, overcoming barriers and dispelling myths, all of which will be done to prime individuals towards consenting to donation.

“Give my sight to the man who has never seen a sunrise, a baby’s face or the love in the eyes of a woman.”