The Committee met to hear a briefing by the parents of Jenna Lowe, who has been diagnosed with a rare disease called Pulmonary Arterial Hypertension (PAH) and is currently awaiting a bilateral lung transplant, on creating awareness for organ donation in South Africa.
Mr Stuart Lowe and Mrs Gabi Lowe spoke about their daughter, Jenna, and described the number of campaigns and awareness programmes she had done in the past years to raise awareness for the disease. Jenna had done radio, television, magazine and newspaper interviews to talk about PAH and the symptoms of the disease. She had won numerous awards for her work as an ambassador for her own campaign, GetMeTo21.
The diagnosis process of the disease was long, because it was not a common disease in South Africa. It can masquerade as asthma when one first gets tested, but with the correct diagnosis, or early diagnosis, one can live a long life. While the treatments for the disease are not available in South Africa, they are available in other countries, and this has been a major problem for the family and others living with the disease. They had gone through all types of treatments, but Jenna now needed a double lung transplant.
It had been difficult to get a transplant due to the small number of organ donors in South Africa. There was a shortage of organs available. There are only 16 transplant co-ordinators and they are located in only four provinces, while there are between 4 300 and 4 500 patients who are on the list awaiting transplants. Organ transplants take place in only two provinces. In 2013 there were 566 transplants, but only 60 were life-saving organ transplants, while the rest were cornea.
For the country to improve on these tragic statistics, the government would have to allocate funding to education and awareness programmes on organ donation, conduct research on new procurement processes for treatments and allocate funding for training and placement of qualified co-ordinators in the Intensive Care Units (ICU). Healthcare costs are also a problem, and medical aids should be allowed to pay for the treatments that are needed for rare diseases.
The Committee sympathised with the Lowe family, but also said there were a lot of myths and stigmas around organ donation, especially among the black communities. People were worried about the kind of dangers there are in donating organs, because some people's organs were being used to make traditional medicine. South Africans also lacked awareness of chronic diseases that existed, and an education programme about chronic diseases was also important, because people were dying not knowing that there was treatment available.
The Committee adopted the minutes of 15 October, 21 October and 22 October 2014, with only minor changes being made.
Briefing by Mr and Mrs Lowe
Mrs Gabi Lowe, mother of Jenna Lowe, said their daughter was currently awaiting a bilateral lung transplant. Four years ago Jenna was diagnosed with a rare disease called Pulmonary Arterial Hypertension (PAH) and in her journey while dealing with the disease she has been able to raise awareness through radio interviews, television interviews, magazine and newspaper articles. She has also been involved in various campaigns around South Africa, including her own, GetMeTo21. Their presentation was not about their daughter and her journey but it was to show that with dedication and hard work one can make a difference. Their only goal was to lobby the Committee to allocate more funding to organ donation initiatives.
Their daughter’s diagnosis had been a long process, because the disease was not known in South Africa. The disease at first masqueraded as asthma and the diagnosis took 18 months. If one gets on to treatment as soon as possible, one can prolong one’s life, but if not, the prognosis was two to two-and-a-half years. Unlike most teenagers, Jenna was not prepared to be a victim. She decided that to extract any value from her journey she was going to make sure people knew what PAH was so that those living with PAH could be diagnosed early enough, and would have a better chance than she had.
There are many people in the country who are suffering from PAH, and all they have access to is either Sildenafil or oxygen therapy (blood thinners). Those are the only mainstream medications that are available in the country, although there are 18 other treatments available and registered around the world, but not in South Africa. When Jenna needed more treatment, there was none available in the country. They had lobbied companies such as Discovery Health to try and bring in doctors from other countries. After all the treatments they had gone through, it was time for Jenna to have a double lung transplant, never thinking that it would be difficult to get a lung transplant. They considered South Africa to be the home of the heart transplant.
Mr Stuart Lowe, Jenna's father, said there was an increasing bottleneck in the organ donation industry. Alarmingly, while the demand had been steadily increasing, the supply of deceased donors had remained stagnant. The reality was there were 16 transplant co-ordinators in the country located in only four provinces, and according to the Organ Donor Foundation there were currently between 4 300 and 4 500 listed patients in South Africa awaiting organ transplants. The tragedy was that lung transplants take place only in Gauteng and KwaZulu-Natal, but not at Groote Schuur.
In 2012 there were only 73 'deceased' donors, and 196 life-saving organs were transplanted. In 2013, there were 566 transplants but apparently only around 60 were life-saving organ transplants -- the rest were cornea. If one compared South Africa to Spain - Spain has a population of 48 million while South Africa has a population of 54 million - there are about 480 transplants in Spain and only 16 in South Africa. Spain has 35.1 donors per million population, and South Africa has 1.4 donors per million population. To increase the number of organ donors and transplants, South Africa would have to radically reduce healthcare costs, help retain and increase crucial medical skills, decrease waiting lists, reduce mortality and improve the quality of life, shift societal attitudes and reclaim the high ground as the 'home' of the transplant.
There were number of steps the Committee could take to ensure the above:
* Funding, or a budget, needs to be allocated for a national marketing campaign to raise awareness, dispel myths and increase organ donor registration;
* Urgent research should be conducted into how best to set a centralised procurement process; and
* Funding must be allocated to training -- there was a dire need for improved training and placement of transplant co-ordinators in every Intensive Care Unit (ICU) in South Africa.
Dr W James (DA) said he also suffers from a rare blood disease and has lived to the age of 61, so their daughter should not lose hope. The South African health system was not equipped to deal with the issues of rare diseases – it did not have the capacity to do so. The University of Cape Town (UCT) hospital had medical devices and medicines that other hospitals in the country did not have. The country spends millions of rands every year on diseases that are preventable (AIDS, Tuberculosis), instead of pumping that money into dealing with diseases that are not preventable.
Mr H Volmink (DA) said it would be a good idea if South Africa adopted the same system as America, where the status of prospective organ donors was indicated on drivers’ licences or their identity documents, but all of that would of course have to be done in collaboration with the Department of Home Affairs.
Mr N Matiase (EFF) said that in Lesotho, where he comes from, there was no culture of organ donation and the same can be said for South Africa, because people had a different perspective on organ donating -- especially the black people. They are sceptical about the process because this kind of thing was not talked about in the black communities. The stigma and myths needed to be erased first before starting with campaigns.
Ms C Ndaba (ANC), referring to the recent killings in the townships for human body parts for making muti (traditional medicine), suggested they should also highlight the benefits of donating organs, and the government, or companies, should show people what safety measures they were taking to ensure that organs were not stolen to make muti.
Mr S Jafta (AIC) said the Committee would have to look at what they could do to solve the issue that had been presented to them.
Dr James said he was grateful that the issue of organ donating had been brought to their attention. People did not understand and know about the chronic diseases that exist. Information about these diseases had to be shared. The restructuring of funds had definitely to take place, because the government was spending more money on deaths which could be prevented.
Mrs Lowe said that the idea of having red hearts on drivers’ licences had been proposed before, and they had been sending post cards to the traffic department to hand them out to drivers, but the post cards always got lost. She believed that training had to be done to educate people, not only about organ donating but also about the different kinds of chronic diseases. The myths and stigmas around organ donating and muti killings could also be addressed through the campaigns and videos for awareness. More than anything, they were determined to empower South Africans through their initiatives.
Adoption of Minutes: 15 October 2014
Dr James said there had been a mistake on page two. It indicated that he was not present on the day, but he remembered being present throughout the whole meeting.
The Chairperson said she was told by the Committee Secretary that he must have not signed the attendance register, hence the mistake being made.
Dr James proposed the adoption of the minutes.
Ms Ndaba seconded the motion.
Adoption of Minutes: 21 October 2014
The Chairperson said the Committee Secretary had made the same mistake again and indicated that Dr James was not present on the day of the meeting, but he was present.
Dr James proposed the adoption of the minutes.
Ms Ndaba second the motion.
Adoption of Minutes: 22 October 2014
Mr I Mosala (ANC) proposed the adoption of the minutes.
Dr James seconded the motion.
The meeting was adjourned.