Meet the Expert: Samantha Nier on the added value of patient advocacy –not just for patients

Medicom Medical Publishers interviewed Samantha Nier, a dedicated advocate for patients with blood cancers, who has transitioned from a career in the pharmaceutical industry to leading patient advocacy efforts. Currently working Network Director at the Acute Leukemia Advocates Network (ALAN) and co-Chair of the EHA’s Patient Advisory Committee, Ms. Nier shares her insights on the importance of patient advocacy, the challenges faced by patients with leukaemia, and the critical need for effective communication and support from healthcare professionals.

What motivated you to focus your career on patient advocacy and blood cancers, and leukaemia specifically?

“I started my career in the pharmaceutical industry as a biologist. I went through a few different roles in clinical trials management, pharmacovigilance, and at some point, I ended up in medical affairs and took the patient advocacy lead in the company I was working for,” said Nier. “I was working for a company marketing a drug for chronic myeloid leukaemia (CML), so I was already involved in blood cancers. But I quickly realised how frustrating it is to be on the pharma side. So, I decided to join the other side. This is how I started working for ALAN, the Acute Leukemia Advocates Network, in 2020, just a month before COVID-19 struck. The work started like crazy.”

What is the importance of patient advocacy in the context of leukaemia or blood cancers in general?

“That's a very good question. There are national patient organisations in various countries that support patients directly, providing information and assistance. Our role as an international network is more focused on generating robust data about what patients think, experience, and prefer. We use various methods to collect these data. Our goal is to ensure that our advocacy is based on solid evidence, not just assumptions about patient needs,” Nier emphasised. “We aim to complement national organisations rather than replicate their efforts. Additionally, we work to build capacity in national organisations to ensure they can function effectively. A significant issue we face is the lack of paid staff in advocacy, with the majority being volunteers, which is a challenge across all areas of blood cancers.”

What are some of the biggest challenges beyond what you just named, facing patients and representative organisations?

“In leukaemia, and likely other blood cancers, diagnosis is a major challenge because symptoms are very vague and non-specific. Patients often don't go to the doctor for symptoms like fatigue, joint pain, or night sweats, and even when they do, general practitioners might not immediately think of leukaemia. Surveys show that many patients have to visit their general practitioner multiple times before being prescribed a blood test. Once diagnosed, patients often aren't referred to sources of information or patient organisations. They might be told they have leukaemia and to come back to the hospital in 24 hours, but they aren't given proper support or information, leading them to search online and find unreliable sources.”

Should specialists prescribe a patient organisation?

“Yes, they could. It would take just 10 seconds in a consultation to give patients a website or phone number for a patient organisation. This simple step could solve many issues.”

What kind of resources and support systems beyond what you've already mentioned are available to patients and their families?

“Currently, there's an overwhelming amount of information available, which can be confusing,” Nier stated. “My advice would be to speak directly to someone rather than relying on Google. Patient organisations are a trustworthy source of information and support.”

What kind of misconceptions are there about blood cancers specifically?

“There are several misconceptions. Firstly, people often don't realise leukaemia is a cancer because it doesn't form a solid tumour. Secondly, there's a belief that leukaemia only affects children, which is untrue. For example, acute lymphoblastic leukaemia (ALL) is known as a childhood cancer, but it also affects adults. Additionally, people often think cancer equals death. However, for chronic leukaemias like CML and CLL, many patients live long lives and die from other causes.”

What recent advances in blood cancer research excite you?

“What excites me most is beyond the new combinations or cell therapies; it's the prospect of physicians taking the time to understand their patients' needs,” Nier answered. “For example, many patients, especially older ones with acute leukaemia, might prefer palliative care over aggressive treatments. It's crucial for physicians to talk about what patients want rather than assuming everyone wants to undergo treatment at any cost.”

What message would you like to share with medical professionals?

“Take the time to understand your patients' needs and their family context. For acute leukaemia, the role of carers is crucial, but not every patient has a carer. Understanding these aspects can significantly impact treatment and care decisions. Some patients might be willing to undergo any treatment to achieve specific life goals, while others might prioritise quality-of-life over treatment.”

For Blood Cancers Awareness Month, how can the public contribute to raising awareness and supporting those affected by blood cancers?

“We need to focus more on prevention. Everyone should ask for an annual blood test, which can reveal a lot about one's health. Taking ownership of our health is crucial,” Nier emphasised. “People should advocate for themselves, ensuring they get the necessary tests and not dismissing their intuition if they feel something is wrong. An annual blood test can be a simple yet effective measure in early detection and prevention.”

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Posted on 1 August 20245 August 2024