Life with cystic fibrosis does not have to be this difficult

Elena Gagovska



Clearly, we cannot eradicate the profit motive overnight, but how can we immediately help CF patients and those with rare diseases?

When Blagojche Ilievski died while waiting for the Trikafta medicine, I thought of my friend Emma Yacobi, the only person with cystic fibrosis I know personally. I thought about how different her life is from that of Macedonian Cystic Fibrosis (CF) patients just because she was lucky enough to have German citizenship.

Overall, I did not perceive Emma as a chronically ill person because from the outside, she had a pretty "normal" life.

"I'm a bit of an odd case because I'm so healthy now and always have been," Emma explains.

Unlike many CF patients, Emma had no lung problems, so the disease was not on her doctors' radar. In her case, CF manifested itself with debilitating digestive problems: she ate 4-5 times more than children her age and was in terrible pain. After some time, her father, who independently researched her symptoms, was convinced that his daughter had CF. While living in Georgia, her parents told a doctor, who was close to them, about their suspicions, and he suggested giving Emma synthetic enzymes.

"The changes happened overnight – I immediately felt better."

After this, Emma took the so-called "sweat test" and was finally diagnosed with CF at the age of four. Although she was only a toddler, Emma explains that she actually got the diagnosis late. It is now standard procedure in Germany to test every newborn for CF.

However, receiving this diagnosis did not solve all problems for Emma. Like many CF patients who are at high risk of developing bacterial infections, Emma battled the Pseudomonas bacteria for up to a year and a half. She had to take different forms of antibiotics for months, eventually ending up in the hospital, where she received the antibiotics through an infusion. Her infection was finally cured when she started taking a third medication.

Although the infection was a mentally and physically exhausting process for Emma, ​​she says she was supported by the German health system. She even explains that, in some aspects, the German health care system is better for the chronically ill than for the general population. For example, if a patient has a simple injury, such as a broken arm, they receive a fixed number of physical therapy sessions, while CF patients have no such restrictions.

Source: radiomof.mk

However, probably the most significant thing that the German system provides for CF patients is access to the most modern and effective drugs: Tricafta/Cafrtio. Since Emma started taking the drug Trikafta in 2020, this bacterial infection has not recurred.

She says she does not feel any big physical changes after taking the drug, but the indicators of the medical tests she does regularly show a huge improvement – ​​something that will give her a better quality of life in the long run.

Trikafta therapy is covered by her state health insurance in which there are no cash transactions (apart from paying the insurance itself): CF patients go to a pharmacy with a prescription for the drug and get it for free. Emma points out that the treatment was more difficult for her when she was on private health insurance due to the work of her mother because many things for her were not covered directly. This means that the examinations and drugs had to be partially paid with their own money and then wait for the insurance company to refund the money.

However, not every CF patient is lucky enough to live in a country with such a functional public health system. Trikafta is one of the most expensive drugs on the market, costing over one hundred thousand euros per year for just one patient. This extremely high cost is a problem for CF patients from poorer countries or countries like the US, which have an almost entirely privatised healthcare system.

According to one study, only 12% of CF patients are treated with Trikafta precisely because of the high price. The effectiveness of the drug means nothing if it is unavailable to those who need it most. But why is this drug so expensive? In her article for Loud ideas, Simona Naumovska explains it as follows:

[The pharmaceutical industry] will never produce drugs that are not profitable, regardless of whether someone needs them. We must not let hope lie in the hands of private companies and private healthcare because they always see patients solely as a source of money. It is necessary to change the system that treats the citizens in a predatory manner.

Clearly, we cannot eradicate the profit motive overnight, but how can we immediately help CF patients and those with rare diseases?

Activists in several countries are already opposing Vortex, the company that produces Trikafta, looking for a World Trade Organization provision that would allow governments to allow someone else to manufacture a patented product without the consent of the patent owner. Basically, the argument of these activists boils down to the fact that the lives of CF patients should be more important than the profits of a pharmaceutical company that owns the intellectual property of the drug.

After reactions from the public and the Cystic Fibrosis Association, at the beginning of March, the eight most critically ill CF patients received the Tricafta drug. This is, of course, a positive outcome, especially since the patients who started taking the drug immediately felt significant changes in their quality of life. But for now, the drug is provided for only one year and only for a small group of patients. It is unclear for the time being whether other CF patients could hope for the same therapy, not knowing who is “trading” for their lives.

I would return to Blagojche Ilievski and where the blame for his early death should be sought. On the one hand, the slow bureaucratic processes and the inadequate budgeting of the Macedonian institutions are to blame. They must in no way be absolved of responsibility, but we must not forget the other culprits in the story: Vortex and the economic-political system that prioritizes the profits of the large (pharmaceutical) companies.

As long as the system puts the "rights" of companies like Vortex before the basic right to life of dignity, it is certain that there will be many more cases like Blagojche.


The article is prepared with the support of the Reporting Diversity Network 2.0, funded by the European Union.

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Elena Gagovska

Elena Gagovska is a writer, researcher, and journalist who graduated from Bard College Berlin and currently lives in Skopje. She is interested in and writes about various political topics such as intersectional feminism, left-wing politics, anti-racism, labor, and LGBTI rights. She regularly publishes articles on the feminist platform "Medusa", and has been published on many other domestic and foreign media such as Women's Media Center, Summer of Solidarity, and Jacobin magazine.