Nicolene Müller: Fighting for Better Treatment

April 26,2018

Pulmonary arterial hypertension (PAH) is a chronic and currently incurable disease, in which the right side of the heart works harder to pump blood through narrowed arteries to the lungs. Ultimately, this extra stress causes the heart to enlarge, and the heart’s ability to pump blood from the heart through the lungs and into the rest of the body is hindered.

We regularly hear, “but you do not look sick.” That’s not necessarily the case. We use disabled parking because we get out of breath quickly when we have to walk long distances. General activities, like climbing stairs or walking on the beach, can cause us to be out of breath.
We have come a long way since my PH diagnosis ten years ago in September, 2007. Currently, there are 14 FDA-approved medications in the world, but only two are available to me in South Africa. Our goal is to make people more aware of this situation and hopefully to bring more medications and a better quality of life to those affected by this terrible disease.

In August 2008, I made an appointment with Dr. Paul Williams, for a possible lung transplant. When I arrived at the hospital, Dr. Williams told us the South African Medicine Control Council had approved a trial drug, Macitentan, and he wanted to see if the trial medication could work for me before looking at a double lung transplant.

Back home, after I was put on the trial medication, my health quickly deteriorated. I had to stop working. I was in bed for 24 hours and on oxygen. I was put on an open label study and received the active medication, not the placebo. My health was stable for a while, but now I need new medication.

In South Africa, we are currently in a Catch 22 situation with medical funders who do not want to pay for medication that can extend our lives. I can lead a better life if I have access to Section 21 medication. Right now, our medical insurer only pays 80% of life-saving medication, and we will have to pay 20% out of our pocket. This will be more than $2,000 per month. No one can afford this, and they are getting away with not paying because I don’t have the energy to fight them and they know it.

If I do decide to go on this medication, I will be forced to leave my home and move into a flat to save money. As a result of this, my family is living in stress, and I am forced to not take this drug, so I won’t put my family through hell worrying about finances.

I conclude with the following quote from the movie, “Jack,” released in 1996 by Buena Vista Pictures.

“I don’t have very much time these days so I’ll make it quick. Like my life. You know, as we come to the end of this phase of our life, we find ourselves trying to remember the good times and trying to forget the bad times, and we find ourselves thinking about the future. We start to worry, thinking, ‘What am I gonna do? Where am I gonna be in ten years?’ But I say to you, ‘Hey, look at me!’ Please, don’t worry so much. Because in the end, none of us have very long on this Earth. Life is fleeting. And if you’re ever distressed, cast your eyes to the summer sky when the stars are strung across the velvety night. And when a shooting star streaks through the blackness, turning night into day…make a wish and think of me. Make your life spectacular. I know I did.”

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