Empowered patients’ roles in drug development

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Patients are the focus of the healthcare ecosystem. More than ever before, in this digital age, patients are empowered with knowledge of available treatments, as well as the shorter reach to get their voice to providers and regulators. At Phar-East 2018, we bring together the entire JAPAC pharma ecosystem to discuss the most important trends impacting the healthcare& pharma industry in the region. As part of this effort, we invited Malini Raj, Non- Executive Director of the World Alliance of Pituitary Organisations (a network of pituitary and related diseases patient organizations who have united to strengthen patient voices and raise awareness a not-for-profit organisation that supports and educates people impacted by pituitary conditions), and Chair of the Australian Pituitary Foundation (a not-for-profit organisation that supports and educates people impacted by pituitary conditions) to lead a roundtable discussion on “Bringing it together: Roles of Patient, Pharma, Hospital and Government in Drug Development” at the event.

Prior to the conference, we interviewed Malini to come out with this article in providing our readers a better understanding on her organisation, as well as how various stakeholders can come together in more effective drug development for patients in needs.


Q: Please share with us what inspired your active involvement in rare disease patient advocacy

Malini: The inspiration came from personal experience as a patient and the desire to help out those who are in need of support or understanding as they struggle with the rare condition. Personally it was a 10 year journey to diagnosis due to the lack of awareness of the disease or the symptoms. I am passionate about creating a support network to ensure that other patients’ pituitary disease journey is an easier one that mine has been and continues to be. Awareness and education is key, and as a strong supporter of innovation, I wish to explore and learn about new options, technologies, drugs and treatments and engage with stakeholders to enable early diagnosis of pituitary disorders and improve the quality of life of patients and also carers

Q: How can patient organisations be more proactive in collaboration and partnership with pharma and government representatives?

Malini: Patient Advocacy Groups (PAGs) are in a very unique position as they act as ‘bridges’ between stakeholders and patients/general public. As such, we need to increase trust, collaboration, and be aware of the needs and concerns of patients/carers/PAG.

We need to improve and insist on co-creation and collaboration with the pharma industry and speak out to local authorities when patient communities need greater access to treatments.

Also to increase the recognition of the holistic impact of the disease on productivity, quality of life and emotional well being in addition to the traditional considerations of only physical well being and achieving “cures” when measuring or determining metrics of success.


Q: What’s lacking in current infrastructure and framework to help patients in your organisation?

Malini: PAGs are often small and lack funding, capacity or infrastructure. This is even more apparent in rare disease patient organisation, hence there is a strong reliance on volunteers often with full time jobs who have to manage or govern the organisation in their spare time. This lack of consistency results in restricted capacity to grow

Funding options are limited, hence the inability to reach the scale to make as much difference or impact compared to its potential.

Communication between key stakeholders and a multidisciplinary approach to treatment could be also improved.


Q: In your opinion, how do stakeholders best balance the issues related to drug safety, efficacy, and access to treatment?

Malini: Not enough is being done – if patient advocates were involved from the early stages of clinical trials for example, it would most likely decrease spending and the timeline in drug development. The Global nature of the industry brings with it infinite complexities due to specific national health regulations and policies. The patient voice needs to be valued and incorporated from the outset and impact to quality of life needs to be treated as equally important as other end points


Q: Who do you wish to meet at Phar-East 2018? 

Malini: The line up of Phar East is very impressive. Given I live in Australia, I am keen to hear about the challenges and opportunities in the Asia Pacific region specifically and how patient organisations like ourselves can support the biotech industry to achieve the best outcomes. I am grateful for the opportunity to participate in the Roundtable and provide a patient perspective and highlight the benefits of collaboration and patient input in the innovation and drug development and commercialisation journey in achieving the best outcome.

Pharma support is critical for patient organisations and to develop a mutually beneficial relationship. Phar East will provide the invaluable opportunity for me to tap into the network of high calibre Big Pharma and start fostering new or strengthening existing relationships and promote awareness of rare diseases in the Asia Pacific region in particular Pituitary conditions. It will also allow me to create awareness amongst this network of the benefits of being involved with a patient organisation to achieve their (Pharma’s) organisational objectives and outcomes.


Malini is one of the 50 early confirmed speakers at Phar-East 2018. Visit our website for more information:  www.terrapinn.com/phar-east/

About Phar-East 2018
From humble beginnings as BioMedical Asia in 2008, BioPharma Asia has attracted close to 20,000 attendees over the last 10 years. Established as a true one-stop shop for all things biopharma, our 2018 program is rebranded into Phar East 2018 to explore innovation in clinical trials, manufacturing, supply chain, market access, partnering, pricing, and more without restricting itself on the type and nature of therapeutic products. Visit our website for more information: www.terrapinn.com/phar-east/


About The World Alliance of Pituitary Organizations (WAPO) 
WAPO is an independent global non-profit global alliance of pituitary and related diseases patient organizations who have united to strengthen patient voices to work towards improved pituitary disorder diagnosis, greater access to health care treatments and ultimately, a more active and decisive participation in the decision-making process when it comes to the quality of life of patients.


About Australian Pituitary Foundation Ltd
The Australian Pituitary Foundation Ltd was founded in Sydney in 1994 by pituitary patients and family members, with the endorsement of Australian endocrinologists, neurosurgeons, radiation therapists and endocrine nurses, who saw the need to support people who have rare conditions of the pituitary gland.  The APFs mission is to support and educate people impacted by pituitary conditions.  We convey awareness and provide relevant information to the general and medical communities and act as a collective voice for pituitary patients and their families.

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