Healthcare: Universal patient access within complex, rare diseases must continue to be prioritised

While Covid-19 persists into its second year, we must not shift our attention from patients with complex and rare diseases. With healthcare systems and supply models under immense pressure and invested in overcoming the effects of Covid-19, we must work even harder to ensure life-saving treatments across disease areas and reach the millions of people worldwide who cannot access the healthcare they need. Data from the International Labour Organization indicates that 55 per cent of the world’s population – as many as four billion people – are not covered by social insurance.

Several factors can influence the speed at which this gap is closed – ensuring the success of strategic partnerships among them. Rather than operating in siloes, we must work together to strengthen healthcare systems at every stage of the patient’s progress – from awareness and diagnosis to treatment and ongoing support.

In my experience across countries, I have seen that change must often happen at the policy level, with the industry sharing resources, expertise, and responsibilities to deliver patients the highest quality of care. When driven by a robust governance framework, I have seen that such partnerships can ensure that in-country capacities are strengthened across the board. These access programmes can further boost voluntary licensing, affordability programmes, sustainable capacity building, and continued dialogue with policymakers and experts from NGOs, patient organisations, and governments.

Putting the patients at the center within the scope of such solution-based multi-stakeholder partnerships can improve care and ensure long-term support even in the difficult times that we experience today.

Now is the time to encourage funding, supporting, and championing patient and physician communities. The longer we wait, delays in diagnosis and patient drop-off might create new and adverse challenges, possibly even reversing the progress made so far.

Data will always be a deciding factor. Clinical benefits can be further amplified with the regulated sharing of generated data delivering gains within speed and efficiency of patient programmes, and developing a deeper understanding of previously underrepresented patient populations. Sometimes access to data determines survival, and better real-world data earlier in the treatment pathway can drastically improve patient outcomes.

Collaboration can help establish guidelines within diagnostic and treatment training at the provider level, especially within underserved disease areas. In fact, partnerships can help the industry go beyond just innovation, achieving even more for patients than what can be done alone within building awareness, diagnosis, treatment and aftercare.

From the current state of access programmes that are centered on licensing agreements and acquisitions within the industry itself, it is time to think outside the box and actively seek out beneficial partnerships with biotech organisations, academic institutions, and non-profit and government organisations that are focused on advancing innovation. For instance, the pandemic has shown us all how significant digital transformation is to accelerate our ability to do more for patients.

Harnessing predictive analytics and machine learning along with patient support solutions can improve adherence and clinical outcomes. By building a digital network with such solutions, we can help enhance patient-provider engagement, drive more efficient communications, enable shared decision-making and improve treatment adherence, resulting in improved patient outcomes.

A model where an ‘access first approach’ complements innovation allows pharmaceutical companies to invest more impactfully in discovering, developing, and delivering medical treatments. More needs to be done; for example, the healthcare landscape must reach a stage where sustainable reimbursement is possible even for the most complex and rare medical conditions.

To address these diseases, pharmaceutical companies have to continue developing highly innovative medicines that contribute to making a difference in people’s lives by advancing the frontiers of new treatment options and leveraging their R&D engines and capabilities.

Let us unite and refresh our commitment to rare disease patients by throwing our collective weight and strengths behind it while continuing to enhance patients’ lives.

Dr. Mahender Nayak is the area head for ICMEA (India, C.I.S., Middle East, Turkey, and Africa) at Takeda