ViiV Healthcare has once again topped the annual PatientView corporate reputation survey. Dr Oleksandr Gorbenko, the company’s director, global patient affairs, explains the company’s views on how pharma should build trust with patients

Look at the news pages and you will quickly find that there is little love lost for the pharmaceutical industry. The high-profile case of Martin Shkreli coupled with regular stories of price rises, payments to healthcare professionals and aggressive – and sometimes very creative – attempts at patent protection have done nothing to help the perception gap that surrounds the industry.

This perception challenge will not go away, nor do I think it necessarily should. Public pressure and media scrutiny will continue to act as a check and balance to keep us honest (and rightly so), but equally I feel it is right that the conversations taking place should refocus themselves not on the minority that let the industry down, but on the vast majority who are leading the way in new discoveries and true innovations that are literally saving lives. From advances in personalised medicine to harnessing gene therapy, this is a truly exciting time for pharmaceutical research and development and the people that will benefit from innovative and improved medicines. But even in this exciting time, we have gone beyond simple drug discovery and supply.

We are now in the business of health and well-being, where we think of the evolving needs of patients and helping them to live longer, healthier lives. This is something that we take very seriously in my organisation, where we seek to bring new treatment innovations to people living with HIV (PLHIV). It’s been thirty years since AZT was first approved to treat HIV/AIDS; this landmark moment was the product of a strong collaboration between industry, advocacy groups and patients working together based on a shared mutual interest.  As we now look to the next thirty years, it is this sort of ethos that the industry must emulate to justify our licence to operate, and the only way we can do this is by earning the trust of those we work with closest.

Mind the perception gap

There is no doubt that a rift exists between the public perception of the pharmaceutical industry and the industry’s own perception. A glance at current newspaper headlines may make us believe that the value we aim to bring as an industry to the general public is not being realised. However, a survey last year by the Reputation Institute’s annual Global Pharma RepTrak report showed that of those surveyed, 44 percent rated the industry as ‘excellent’, an improvement on previous years. This is encouraging, and shows that we are moving in the right direction from a reputation perspective. This by no way means that the job is done, more that we should build on the current positive momentum. Valid challenges from the public and governments around costs of treatments, questioning industry motives, and perceptions around profits will no doubt persist, but sharing more about how we  do make a difference to patients  will help.

It is often hard to know for sure if we are moving the perception needle and building the trust, which is so critical to our successful collaborations. In the annual PatientView survey on corporate reputation from the patient perspective, it was interesting to note how HIV/AIDS patient groups showed higher regard for pharma than patient groups from most other therapy areas. We were delighted to see that the patients who were surveyed ranked ViiV Healthcare first for corporate reputation, when judged by HIV/AIDS patient groups, and ranked first in 11 of the 12 indicators of corporate reputation, including integrity and patient centricity. We are less interested in what this says about ourselves than what it says about the effectiveness of our partnerships. Clearly together with our partners we are doing something right.

Last year, we launched the first phase of our Positive Perspectives survey, conducted in nine countries and designed to explore the perspectives and attitudes of PLHIV on diagnosis, HIV status disclosure and the impact of stigma, treatment choice and communicating with doctors. This year, we will look to release new data from partners in romantic relationships with PLHIV to further explore their unmet needs. The type of insights gathered from the HIV community from this initiative will help drive our patient-centricity strategy, which aims to listen to PLHIV, identify their unmet needs and provide complex services and solutions throughout the Medicine Development and the HIV care continuums.

The value debate

Drug pricing and healthcare affordability will remain key concerns for countries’ healthcare systems, while increasing competition and regulatory hurdles remain challenges for industry players. We must however remain committed to true innovation, improving past medicines with better ones, boldly introducing new treatment strategies that buck the status quo. In short, we need to be brave and take more risks. We need to produce less ‘me toos’ and launch more category breakers. And if this is right for the patient, it will in time prove right for our shareholders.

We work with the HIV community to get insights that help guide our investment approach to research and development so that we are providing the right medicines for all key-affected PLHIV, including children, women, ethnic minorities and older vulnerable groups, no matter where they live in the world. This agenda is diversified: from an input to study design and clinical protocols to patient-reported outcomes (PRO) and plain language summaries (PLS) on study results. Our access to medicines strategy considers the specific challenges faced in terms of epidemic burden and economic status, and includes all low-income, least-developed, middle-income and Sub-Saharan countries (developing countries) where the unmet need for antiretroviral therapy  (ART) is greatest.

As healthcare budgets in middle- and high-income countries come under more strain, questions as to what savings can be made are inevitable. The medicines budget line remains an easy target, but only 14 percent of the UK’s NHS budget is on medicines, reflecting only 1 percent of the UK’s GDP. By no means is £16.8 billion inconsequential, but any cogent and balanced discussion should explore the bigger picture. Here, collaboration is essential: working with government, regulatory authorities and patient organisations to agree and deliver advancements that are essential to effective treatment and care through national healthcare programmes. From an industry point of view, we have implemented a range of solutions including flexible pricing policy, local partnerships and voluntary licences.

Meaningful partnerships to create solutions

As an industry we should remember that it was the advent of AIDS in the 1980s that forced patients, governments, physicians, researchers and pharma companies to work together and find a solution during a time when key affected populations were dying in their thousands.

It was the genesis of true treatment activism. Motivated by fear, anger and uncertainty, patient advocacy groups lobbied for accelerated approvals and for research funding, demonstrating how citizens and science could tame what was then an unstoppable plague that was shrouded in ignorance. And though the landscape has changed dramatically since the arrival of combination therapy, we remain indebted to collaborations with the HIV community that got us to where we are today.

What this demonstrates is that without true partnership there is no true success. Any lack of trust in our industry slows progress in meeting patients’ needs. This goes beyond providing much-needed funding, but includes initiatives that have a clear focus  on ensuring access to our medicines and leading worldwide activities to deliver education, support services and care. And longevity counts.

For those companies and organisations working in HIV, we have seen how working together has dramatically altered the social, regulatory and treatment landscape, from a disease that once meant an inevitable death sentence to one that can be managed as a chronic condition. The journey has been a dramatic one at times, which bears great lessons for the industry as a whole: we can create and maintain meaningful and trusted relationships with our stakeholders even in the most fraught of circumstances, but we must ensure we are not simply in it to address our own agenda and needs.

As is the case in successful relationship, mindful communications and true partnership are key.