Juan Michael West uses a nebuliser as part of his treatment for cystic fibrosis.
Fuelled by the passion of its health workers, ward 496 of the hospital is a beacon of hope in an institution riddled with allegations of mismanagement, overcrowding and negligence.
The clinic is the only state unit that treats adults with the often misunderstood disorder of cystic fibrosis. But because of a lack of funding, it may have to close its doors.
Walking through its double doors, one sees sunlight streaming through the windows. Framed photos of patients greet visitors in the passage. Single rooms sport fridges and televisions. Nurses smile and nod.
It is a world removed from the rest of the hospital, in more ways than one. Ward 496 touts itself as the only public centre for treating adult cystic fibrosis in the country. But those who visit know it is much more than that.
A neglected orphan disease
Cystic fibrosis is a life-threatening inherited disease that is relatively rare in the population. There is no cure for it.
A build-up of thick mucus in the lungs and digestive organs affects breathing and the digestion of food. Patients commonly die of lung failure. It can also affect the pancreas, leading to diabetes, and may cause infertility. Although a genetic disease, cystic fibrosis occurs in all race groups. Between one in 2 000 white and one in 32 000 black South African babies are born with it.
Because of its low incidence, the disease has traditionally received little attention from healthcare providers. Adult cystic fibrosis patients at Charlotte Maxeke were originally treated at the general pulmonology clinic, giving rise to several challenges. Sister Carol Furlonger, the ward's unit manager, said infections were not treated timeously and cross-infection among patients was rife. Appointments were a full three months apart and "quality of life was restricted at a young age".
Professor Mervyn Mer saw the need for a specialised, multidisciplinary clinic for adult cystic fibrosis patients. In 2004, he spearheaded the unit where specialist doctors, lung function technicians, physiotherapists, dieticians and genetic counsellors provide treatment all in one place.
Life expectancy for patients has increased from 14 years in the 1980s to 38 years today. "The multidisciplinary team … is the most important reason for the increased life expectancy in South Africa and the rest of the world," said Dr Cathy Baird, who runs the unit with Dr Lindy Gouws.
Ward 496's remarkable nature
"Sergeant Major Furlonger", as the unit manager is sometimes called, gets in to work at 6am every day and works 12 consecutive days before taking a break. She explained how she dealt with "noncompliant" patients who did not follow instructions for self-care. "Now, if they're naughty … boom! They're put into the general ward with the other patients," she said. "You must hear the names they call me: Hitler. Bitch. I actually really don't care."
The ward is stocked with things like soap, toothpaste and light bulbs that "Hitler" buys from her own pocket. "Once a month I go spaza shopping," she said.
She once took a patient, Warren*, to Mike's Kitchen for lunch. "Warren took a bet with me that he had a better alcohol tolerance than I did. And I said: 'No boet, I'll drink you under the table.' Of course I knew I'd win, because he was on antibiotics. After the lunch he was all over the place. I said to the staff: 'I am so sorry. Warren is as drunk as a skunk!'" Months later, on his death bed, he said to her "I want you to tell me that it is okay to go". "And after I did he died. And it killed me, because he died on my birthday," said Furlonger.
Her life is interwoven with those of her patients. She "lives and breathes this. She's outstanding, she really is. And most of the unit functions because of her drive," said Baird.
Furlonger said Baird and Gouws often spent an hour consulting with a single patient and worked several hours unpaid each month.
The nursing staff, too, has an attendance rate of 98%.
The unit also represents an unusual symbiosis between publicly and privately funded health care. Historically, the centre's doctors were privately funded through a charity, the South African Cystic Fibrosis Association. The rest of the staff are state funded and the ward is housed in a government hospital.
"We have patients on full medical aids who prefer to come to this clinic rather than a private doctor," said Baird.
A consultation for a patient earning R3 000 or less a month costs only R40, thanks to the state's tiered billing approach. This covers consultation by three or four medical specialists as well as laboratory services and medication. Patients on medical aid are billed at private rates and the money provides much-needed replenishment of government coffers.
The crossroads of funding
But the clinic has reached a financial crossroads. Its salary funder has a cash-flow problem and expenses have grown faster than cash inflows.
"Essentially, the South African Cystic Fibrosis Association has run out of funds largely due to tight economic conditions," said its Gauteng chairperson, Alan Dunn.
The association relies on fundraising events and corporate and private donors for cash. Although it supports the funding of doctors in a crisis situation, "we do not believe that it is wise to be funding the doctors in the long term" using "funding that cannot be guaranteed", he said.
"We believe that adult cystic fibrosis patients have a right to proper treatment by state-funded doctors."
The unit will be applying for state funding, a process that begins with internal discussions. Adam Mahomed, administrator in the division of internal medicine at Charlotte Maxeke, said a discussion would be held in July between the division of internal medicine, the cystic fibrosis unit and the doctors.
Baird said she could understand the state's dilemma in allocating funding to rarer or orphan diseases but "it would be terrible to close down the unit".
"Although it has only 100 patients, it is an amazing example of a multidisciplinary approach to more common diseases and the management of resources."
*Not his real name
Charity gets behind drug roll-out
Kalydeco, a drug to treat the cause rather than the symptoms of a specific group of cystic fibrosis patients that was approved by the Food and Drug Administration (FDA) in the United States, did not come about in the normal way.
The Cystic Fibrosis Foundation teamed up with Vertex Pharmaceuticals to develop and study the medicine in what is believed to be the first case in which a charity assisted financially in the development of a drug.
"Patients have played an important role in how new drugs are developed and studied since HIV/Aids activists in the 1980s and 1990s. But what the Cystic Fibrosis Foundation pioneered is a new form of patient power that some have called venture philanthropy," said Dr Janet Woodcock, director for the FDA's centre for drug evaluation and research in a blog on fda.gov.
"The foundation helped with the drug's development costs, provided useful insights about the patient population and helped to recruit study participants – contributions that were critical to quickly bringing the new therapy to patients. The unique and mutually beneficial partnership serves as a great model for future drug development and patient group collaboration moving forward," Woodcock said. – Thalia Randall