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Behind Biotech: Bojana Mirosavljevic

When companies seek support with rare disease patient advocacy, ICON Biotech’s Bojana Mirosavljevic brings insights that are hard won. As a chemist, embryologist, and mother of a rare disease patient, she sees patient advocacy from the dual perspectives of science and caregiver. In this article we learn about her background and how it informs her work. 

First hand advocacy experience

Mirosavljevic’s patient advocacy began when her daughter Zoya was three years and five months old. Up until that point Zoya was a healthy and happy little girl who met her developmental milestones. That changed when she began to have frequent epileptic seizures. For a while the seizures were stabilised with medication. When she began to lose her balance Mirosavljevic brought her for medical treatment. Unfortunately, her concerns were dismissed as being those of an over-anxious mother. Some time later Zoya lost all her motor functions within a day. She could no longer walk, talk or even recognise her parents. She also lost her swallow and had to be fed through a tube in her stomach. Her medical team were unable to identify the cause of these sudden, devastating changes to her health.

At this point Zoya’s doctor at Belgrade Children's Hospital suggested that the family bring her to a medical centre abroad. After carrying out her own research, Mirosavljevic brought Zoya to Great Ormond  Street Hospital (GOSH), London to seek a diagnosis. The Mirosavljevics sought government-funding to travel but their application was refused. Like many rare disease families, they funded the medical and travel expenses themselves. They sold what they could, borrowed from friends and family and scraped together the €60,000 needed for Zoya’s medical transport and stay in GOSH. Almost immediately Zoya was diagnosed with Batten’s disease. This incurable fatal neurodegenerative genetic condition causes lipofuscin, a waste product, to accumulate in brain cells. Zoya died in 2013 at age nine.

Zoya’s legacy

In 2010 Mirosavljevic founded a rare disease patients association in Serbia, Zivot-Life, to support other rare disease families and advocate for change. She successfully sued the Serbian government for refusing to pay for Zoya’s travel for medical treatment. Within a week of Zoya’s death, with the support of her family and Zivot-Life, Mirosavljevic began a campaign to introduce Zoya’s Law to Serbian parliament. The objective was to accelerate the diagnosis of rare diseases and provide genetic testing and prenatal testing for rare disease families. After an emotionally exhausting fight, Zoya’s Law was unanimously passed by Serbian parliament in 2015. 

The law has 4 main parts:

  • If a patient cannot be diagnosed in Serbia within six months their doctor is required to send a blood or tissue sample to the global reference laboratory for further analysis
  • Family members who are potential rare disease carriers can be tested to map the pathological gene within the family
  • Families at risk of having children with a rare disease are enabled to have a prenatal diagnosis
  • Preimplantation genetic testing (PGT) is offered to rare disease families who want to avail of it 

Thanks to Zoya’s Law the average length of time to diagnose a rare disease in Serbia is 1.3 years. This is far quicker than the European average of 4.7 years.1 Zoya’s Law means that many Serbian families are spared the challenges that the Mirorsavljevic family endured. Zoya’s Law also enabled the Mirosavljevics to have two healthy girls using genetic tests and PGT.  Mirosavljevic continues to advocate on behalf of rare disease patients in Serbia and has presented Zoya’s Law at the European Parliament in Brussels and the UN in New York in 2016. 

Why patient advocacy strategy is essential for biotech

Many pharma and biotech companies aim to make their clinical trials more patient-centric. However, they do not always go about it in the best way. With her valuable insights and direct experience as a patient advocate, Mirosavljevic bridges the divide between patient advocacy organisations and biotech. Being patient-centric starts with including the patient voice. “There is no logic to doing something for the patient if you don’t speak with the patients,” Mirosavljevic says. She argues that integrating patients and patient advocacy organisations into trials from the beginning leads to better trial design and protocols. There is an urgent need for research into new treatments for rare diseases. More than 75% of patients with rare diseases are children, and 30% of patients die before reaching age five. After years spent seeking the correct diagnosis, and with few – if any – treatment options, “rare disease patients don’t have time to wait, trials are very often their only chance to try to survive.” 

Much of Mirosavljevic’s working week is spent educating pharma and biotech companies on the value of connecting with patient advocacy organisations. This goes far beyond patient recruitment. Patient advocacy organisations are aware that they are much more than recruitment tools. Some regulatory authorities require that sponsors reach out to patient advocacy groups. Unfortunately, this has lead to some sponsors treating patient outreach as a box-ticking exercise. Instead, they should establish long term meaningful relationships with patient advocacy organisations. This is where Mirosavljevic excels. She works with biotechs to create strategies that include patients’ input to the clinical trial process. Rare disease patients and caregivers have insights on their diseases that the science community do not. They understand their diseases in a way that is impossible to outsiders. Their insights can be used to inform clinical outcomes and endpoints. Rare disease patient advocacy organisations are often highly networked, sharing information with other rare disease patients both in the same country and further afield. Patient advocacy organisations can also influence regulatory agencies, as Zoya’s Law demonstrates powerfully. This influence can enable more innovative clinical trial designs which push the boundaries of what is possible. 

Collaboration and communication

Collaboration is high stakes for both sides and good communication is central to this. Language gaps can impact a patient's ability to find a diagnosis and join a clinical trial. Non-English speakers, both doctors and patients, may be unaware of the opportunities for trial participation when the information is only available in English. According to Tufts University Centre for the Study of Drug Development, 90% of nurses and physicians are comfortable discussing clinical trials with patients. Yet less than 0.2% refer patients to them.2 Patient advocacy organisations are more likely to be aware of clinical trials than many doctors, and more comfortable telling patients about them. Another challenge to rare disease patients is if there is no patient advocacy organisation for their specific disease in their home country. It can be difficult to connect with the right organisation abroad if you do not share a common language. This can lead to patients being isolated and excluded from clinical trial participation. 

The future of patient advocacy and rare diseases

Mirosavljevic would like to see patient advocacy strategies adopted beyond rare disease research, for rare cancers and other more common diseases. Patients’ voices could be included more widely in healthcare and clinical trials. She’s excited by cell and gene therapy developments and the possibilities they offer the rare disease community. These new therapies raise both hope and many questions. For now the expense puts them beyond the reach for patients. However, in the future she believes they will be a gamechanger for rare disease treatment. 

So many aspects of rare disease families’ lives are a struggle: to get the right diagnosis, fight for the necessary resources and find a potential treatment. Connecting with a patient advocacy organisation provides rare disease families and patients with much needed emotional and practical supports. Connecting biotechs with patient advocacy organisations provides the scientific knowledge and clinical trial opportunities that can lead to medical breakthroughs. Mirosavljevic began advocating for a single patient, Zoya. Since then she has transformed the lives of thousands of rare disease families in Serbia. Today at ICON Biotech her mission is to strengthen the connections between biotechs and patient advocacy organisations. In doing so she hopes to impact even more rare disease families worldwide by supporting the development of new therapies. 

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