Access to health care services: The plight of Alem Ereselo

Taking a loved one off life support has presented many people with an impossible dilemma. All of us live with a dreaded fear of ever being placed in a situation that requires us to make such a call or to sanction such a decision. It must be one of the hardest things to do. It takes much agony and pain and heartache. We question ourselves. Are we playing God?

We struggle to let go.

Yet, as we confront living with a public health system in crisis, it is deeply troubling that the excuse of “limited resources” has dehumanised us. It has become a mantra apparently acceptable even to most human rights activists. For the managers of Helen Joseph Hospital there appeared to be no agonising over the decision to remove Alem Ereselo from dialysis treatment – after having made the decision to put her on in the first place. How cruel and heartless that sounds.

And where is the public outcry now that you have been told her story? Alem is a young person, a young human being, who, with all things being equal, should have a life ahead of her to live with dreams and hopes. But as we well know, in South Africa, all things are not equal. And what amounts to a death sentence can be administered at the stroke of a pen when sanctioned by a policy.

Having put Alem onto kidney dialysis treatment, Helen Joseph Hospital justified its decision to then take her off treatment on the basis that it is permitted to do so in terms of a policy of the Department of Health. In terms of this policy, asylum seekers are prevented from receiving chronic dialysis because asylum seekers (and refugees) are not automatically eligible for transplants on the basis of their (lack of) citizenship.

The madness of this policy is that had the asylum system in South Africa not failed Alem, she would have been able to stay on chronic dialysis treatment after waiting in the queue like everyone else, but would not be placed on the list to receive a kidney transplant. So, even if her brother offered to give her one of his kidneys, she would not be able to have a kidney transplant because refugees and all other foreign nationals, with the exception of those who have permanent residency, do not meet the criteria to qualify for organ transplant.

Another highly relevant and critical issue is the failure of the asylum system to ensure that Alem – and others like her – receive the necessary documentation within reasonable time frames. Alem’s claim for refugee status sits in a backlog, together with approximately 180,000 other applications.

This is an example of how the inefficiency of the Department of Home Affairs has life and death implications. How would a South African react if it took 10 years for the department to provide you with an ID? Imagine the inconvenience. So, is it acceptable for people to wait 10 or 15 years for valid documentation or for a timeous completion of the process, even if this is a rejection?

Is it acceptable because they are foreign nationals, who are predominantly from elsewhere on the African continent? Being predominantly from the African continent is significant, because the asylum system functions on the prejudiced premise that foreign nationals from Africa are lying about being persecuted and they just want to exploit our system and abuse our resources; that they are “merely economic migrants”.

Giving a human being the title of “economic migrant”, or “asylum seeker” or refugee seems to justify inhumane treatment, including denial of access to life-saving treatment. What we witness at Lawyers for Human Rights is that this prejudice is meted out predominantly to black African migrants. It is what informs the xenophobia that destroys the fabric of our society.

According to research published in the Continuing Medical Education journal in 2014, South Africa has one of the highest incidences of renal failure in Africa. It is estimated that there are over 5,000 patients with end-stage renal failure, and more than 2,500 people are awaiting transplantation. This is a crisis. And we need to fight to ensure that money is not the deciding factor over life and death.

Alem is one of the many people in need of chronic kidney dialysis. It’s not her fault that she needs care. A simple definition:

“Acute kidney failure occurs suddenly and is often reversible. Causes include an accident, wound, disease, infection, shock or ingestion of a poison or a drug. When the kidneys are damaged, they stop producing urine. Poisons build up in the bloodstream, leaving the patient confused or unconscious and overloaded with fluids. Patients experiencing acute kidney failure are placed on a special diet, fluid restrictions and temporarily dialysis until their kidneys heal. With treatment, kidney function may return to normal.”

“Chronic kidney failure can develop over a long period and is generally not reversible. Once the disease has progressed and kidney function is down to 10%-15%, dialysis is usually required. Dialysis performs some of the functions of healthy kidneys but is not a cure for kidney disease. Generally, the patient will need to have dialysis for the rest of his or her life or receive a kidney transplant.”

Alem is in the vortex of a vicious spiral. She needs access to dialysis three times a week. Having been taken off treatment six weeks ago, she now needs a medical process to stabilise her. To be stabilised, she needs to be admitted to a hospital; after that, she can go back to regular dialysis treatment. This requires access to emergency care. But no public hospital will admit Alem, because she is a foreign national with an asylum seeker permit.

Private hospitals demand upfront payment of R150,000.

So far, the #AlemAlive campaign has raised some funds to pay for the critical services of a nephrologist and other expert medical practitioners so that a device called a port can be put in permanently to enable her to go onto dialysis. She had a temporary port which cannot be used for more than a few rounds of dialysis. But she cannot be admitted to have the port inserted while she remains in an unstable condition.

If you have the privilege of being on a medical aid then all this will be covered. But if you are poor, and worse still an asylum seeker, then the plug is pulled.

What happened to Ubuntu?

As a brilliant doctor friend of mine, Dr Prinitha Pillay, an oncologist, said: “Do we as health workers become hamsters on a treadmill?” She was speaking as a medical doctor about being regularly confronted with situations where medical practitioners should speak out about injustices against humanity, but where many opt to just stay silent and keep on keeping on.

Whatever happened to protecting and enhancing the fundamental value of dignity?

Update: Alem remains critically ill and is currently awaiting her fate in a public hospital where she is on a drip and receiving painkillers. MC

• Sharon Ekambaram is a human rights activist and the manager of the Refugee and Migrant Project at Lawyers for Human Rights.