‘I want to die but they won’t let me’ – Sickle Cell patient shares struggles

What you need to know:

• Joe Mudukiza, 28, was diagnosed with sickle cell at the age of two. It was only until last year that the disease completely knocked him off.
• He now wants to be medically assisted to die, but everyone around him is against his decision. Only one step is remaining for him to travel to Belgium for the procedure.

“For five months, my mind has been clouded by thoughts of my death. I have tried wearing a mask of strength that everyone around me is familiar with, but pain has been peeling off that mask.

This is the first time, in 26 years, that I have chosen to show the world my vulnerability. I have made a resolve to find peace, if there will be, in the afterworld. While the decision I am making is strange to my people, my culture and my country’s laws; would I rather live with pain so unbearable that it pricks every cell in my body?

Ever since I was diagnosed with sickle cell disease more than two decades ago, I have known pain as a constant visitor that shows up uninvited to disrupt my life. Despite getting accustomed to this fact, I didn’t know that its pangs increase with age. Since April last year, my life has taken a complete turn-around and even the pain that is not strange to me shocks me every day.

I have tried all there could be to suppress its sting, but I am now holding on to the last string. The internet has provided me with my last option — euthanasia, what other people call mercy killing. I included this option in my bucket list when I had one of the worst pain episodes. At the time, I was living with my cousin in Kasarani.

I remember being surrounded by nurses who were trying to find my veins in vain, yet the pain intensified every minute. This lasted for six hours, and when I went home after that, I started researching euthanasia. I have watched countless YouTube videos of people who chose to be assisted to die. I have read every material there could be on the internet about mercy killing. I now know some of the laws by rote.

While Kenya does not have this option, I reached out to the Association for the Right to Die with Dignity in Belgium. They responded positively and I have started the process, only that no one around me supports this move. I am on my own.

All my Kenyan doctors, who are supposed to sign one of the documents needed before the medical procedure is done in Belgium, have refused to be part of this mission to my grave. They told me that they are in the profession to preserve life, and not to end it. I told the Belgian physicians about this development and they said that I can still get my desire without their signature. I just have to confirm, beyond reasonable doubt, that I am mentally fit and it is my last solution.

My mother learned of my decision five days after I put up a Facebook post detailing my intention. She was steeped in disappointment. She sent a message, reminding me that she is the only parent that I have. She reminded me to go to her when I felt heavy-laden.

I, however, feel that my yoke is too heavy for her. I am not sure if I will go to see her as she wishes. She has told me that she is the only one who should make a decision on my travel to Belgium and I shouldn’t do it without her approval. She knows that I am the strongest person living with sickle cell, and she still can’t imagine that I can make such a decision.

But, sometimes, even the strongest soldiers know when to retreat. When I asked her if she would like to be interviewed, she declined.

Growing up, I had a timetable for medicine and no one cared to explain to me why this was part of my life. I incessantly asked my mother why, out of my five siblings, I was the only one who had a carved-in-stone routine that felt a bit desolate. Her rejoinder, all the time, was that I was a special child. I felt special, when that lasted, until the day that I learned that there was more to just being a special child.

The expiry date for my mother’s white lie was when I joined high school. That was the time I outgrew her comfortable wings and joined boarding school for the first time. It was then that she told me that I had sickle cell disease.

Life in my first boarding school punched my already frail self and knocked me down. I could not stick to my drug routine as I did in the previous years. I became puny and had to change schools. I moved to another boarding school near my village.

It is in my new school that I was engrossed in reading about my condition. While I was a full-time student, being in school felt part-time in every sense of it. My pain doubled and I had to be out of school most of the time. In the unfortunate event — which happened countless times, that I got into a crisis while in school, my fellow students would move away from me.

Most of them did not know about sickle cell, so my life became like soft wax; the students stretched and twisted their ideas of my sickness to their liking. They called me a devil worshipper and accused me of being part of a cult. When I first got wind of my new ‘titles’, I would cry, but I later got used to it and cared less about what people thought and said about me.

Regardless of the many times that I was out of school, I still made it to university and studied English and Literature. While I always wanted to be a journalist, my dad wanted me to be a teacher. I went ahead and also did a course in Film and Media.

I enjoy teaching, but I quit because of my condition. I chose to stick to my other passion; drama, but that too is impossible now. The highlight of my career was in 2019 when I wrote a play about my life and that of other sickle cell patients. It was staged by students of Kapsabet Boys High School and that made me swell with pride.

I am a dad. Long before my sickness became the crippling shadow that it is now, I was energetic and loved community work. This is because when I was growing up, I was isolated from society. I could not do things that other people would ordinarily do. While doing my service to the people, I met children who I thought needed my help.

So I ended up legally adopting five children. I also have one biological child. My children know about my condition and they have in so many ways helped me when I get into a crisis. When they are around, I get a sense of responsibility, I feel like I have something to live for. I don’t know what they would say when they learned about my decision.

What a pain crisis feels like

Living with sickle cell is strange; you wake up tired and retire to bed the same way even when you have done nothing. When I get a crisis, it feels like someone is ripping off my skin and then inserting broken glasses into my veins.

When this happens, I can’t speak. When I try to talk, every word that comes from my mouth feels as though I am chewing razor blades and swallowing them. Every word spoken is equivalent to swallowing a hundred razor blades. When in pain, I just sit and watch, or sleep. When pain seeps into my bones, I lose my ability to think straight. It interrupts my thought process.

I am unproductive, and in pain, and my unproductivity keeps graduating to levels higher than before. The only time that I feel better is when I am on opioids. They numb me. But, for how long? I can’t be on opioids all the time despite it being a prescription drug. When I take it, I get into a trance. I find myself ensnared in a feeling of fleeting relaxation, albeit temporarily. Unlike most people who take opioids in a day, I take a dose of an opioid after every six hours.

Now I can’t leave the house alone. I always have to walk with someone. My caregiver, a 20-year-old who is volunteering to take care of me because of his passion for medicine, has been by my side since last year. This phase reminds me of my dad’s death.

He died of cancer. He was the strongest person that I had known since I was a child. Cancer took that from him. I saw him cry like a baby. I saw him depend on my mother for literally everything. He lost his memory and Mum had to start making decisions on his behalf. I don’t want to get to that point.

My children see me as their source of strength. Many times when I am in pain, I see their faces painted in dull colours of pity. I don’t like that. I want to die honourably. My condition keeps deteriorating. In the last 10 months, my peripheral veins have been poked so many times that they can’t be accessed anymore.

My doctors have told me that I should get a minor surgery called the central venous catheter. Should I get this, I need to be admitted to hospital for some time because I need to be trained on how to use it since it is prone to infection. Because of my hip bone that cannot support the lower part of the body, the doctors have also recommended that I should get vascular necrosis surgery.

This surgery will help in restoring the flow of blood and oxygen to my hip joints. I have no resources to pay for any of these surgeries. One time I volunteered to be part of a clinical trial that would potentially help sickle cell patients here in the country, but I didn’t make the cut.

I have heard that there are options for new forms of treatment like CRISPR, and CAS/9 gene editing, but it is out of reach for myself and many Africans living with the disease.

When I was strong enough, I was also part of a team that pushed for a petition in Parliament seeking to subsidise the medical cost of sickle cell and that all level five hospitals have an emergency section for sickle cell patients. Through the help of the current government spokesperson, we registered an organisation that had people living with sickle cell disease. This has since stalled. Where do we get our hope now? I have no doubt had enough.

Please, just allow me to die!”

Lawyer’s Perspective

The World Medical Association defines euthanasia as the act of deliberately ending the life of a patient. But even at the patient’s request or at the request of close relatives, it is unethical.

Dennis Nkarichia, who specialises in medical law, explains that there are different forms of euthanasia including; passive euthanasia and withdrawal of treatment.

“With passive euthanasia, a physician can assist someone with a terminal illness to end their life, for instance by prescribing a drug to you, knowing that it will end your life, but they don’t take an active step,” he explains.

He says that in Kenya, it can be termed as death tourism. This is because we don’t have this option in our laws so people who have ever done it travel abroad to die. At the moment, there is no African country that allows euthanasia.

“You just need to see a doctor who will assess your mental health. It is a criminal offence to kill someone, the only loophole is that if the doctor assesses you and finds your mental function is okay, then you can go ahead and be assisted to die in another country,” he says.

Withdrawal of treatment is just as is, only that one needs to be careful.

“There is a very clear ethical boundary under legal distinction between one being charged for murder or manslaughter and that of euthanasia,” he adds.

He says that since the Constitution grants everyone rights at a personal level, and at a community level, people can make decisions on euthanasia by themselves. “As a person, you have autonomy over your medical status and condition. The state will only intervene when you attempt suicide. As it stands, there is no legal documentation between countries on medical tourism,” he explains.

He says that once a person goes to the country where mercy killing is offered, whatever happens to that body is dependent on the agreement the hospital had with the patient. “Some people are cremated, and others leave their bodies to be used for organ donation,” he says.

He is afraid that the Kenyan laws on euthanasia are not likely to evolve soon. If they do, then it will be from a private person-driven capacity and not from a legislative capacity. “It is an emotive issue. If I were in such a position as a private person, I would go through the High Court to get a declaration that can help one to terminate their life if there are no options,” he says.

About sickle cell disease

Sickle cell disease is prevalent mostly on the coast and in western Kenya. Dr Sophie Uyoga, a research scientist at the Kenya Medical Research Institute, explains that in the country, the predominant option for the disease is management and not treatment.

“We have drugs like Hydroxyurea, for those who can afford it because there is a challenge for access. These management strategies have yielded fruit and we are seeing most patients survive,” she says.

She tells Healthy Nation that the Health Ministry’s new guidelines on newborn screening will go a long way.

“Most parents don’t know that they are carriers of the condition. The sooner we get the children, the sooner we will start managing them for a better life ahead,” she explains.

Treatment options for the disease keep evolving and scientists recently came up with CRISPR-Cas9 gene editing technology, one of which Dr Uyoga explains that it works like a cut-and-paste function of a computer but in a laboratory.

“When someone has sickle cell, they get a change in their genetic composition. That change is what causes the red blood cells to sickle (form a crescent-like shape),” she says.

“This technology allows one to edit, essentially you can correct the genes. You can either remove the section of the gene that has the mutation or insert back a normal gene, or you can switch back on a haemoglobin that is usually produced when one is a baby (called haemoglobin F). It is good at carrying oxygen around the body,” she explains.

She, however, says the drug is quite costly (about USD 2 million), and accessing it can be a hurdle. This is the second year since the first patients were put on it.

“Results from the initial clinical trials show that the drug prevents sickle cell patients from getting a crisis, which is like the main thing that affects people living with sickle cell,” she says.

“There has to be more follow-up to see if there are any effects. The problem with gene editing is that one may end up editing other sections of the DNA that are not what you are aiming for. So you can imagine the impact of that. We still don’t know that,” she adds.

She says there’s hope that one day the drug will reach us, but not as soon as most patients may want it.

“As scientists working with sickle cell patients, we would want our patients to live now and live a fruitful life,” she says.

hshikanda@ke.nationmedia.com