Shire: Standing Up For Patients

Pharma companies must champion their patients to ensure their voices are heard, says Shire’s Perry Sternberg



Shire has come a long way from a small pharmaceutical start-up in the UK selling calcium supplements for people with osteoporosis. Now, after its $32bn acquisition of Baxalta last year, it is the largest global biotech focused on rare diseases.

“Shire is now the global leader in rare diseases and highly specialized conditions,” says Perry Sternberg, EVP and Head of US Commercial. “We have been on a four-year journey since Flemming Ørnskov came on as CEO, a real transformation. As a physician, he wanted to focus on innovation and, in his mind, the greatest innovation was in the rare disease area. There are thousands of rare diseases out there and most do not have any therapies at all, so the patient need is huge. The model has paid off for Shire and we continue to go into areas where no other companies work, delivering amazing innovation to patients that suffer from rare diseases.”

In common with many other pharmaceutical companies, Shire is focused on the patient but Shire’s approach is unique, says Sternberg. “We’re really agnostic about where our innovation comes from because, at the end of the day, we are focused on that rare patient. At every leadership meeting, we start by hearing from a patient suffering from a rare condition and you are left hoping and praying that we can come up with a therapy to help that patient, or their child if they are a parent.”

For Sternberg, who is speaking ahead of the eyeforpharma Philadelphia conference in April, it all starts with an understanding of the patient experience. “If you don’t suffer from the rare condition yourself, it’s hard to understand what it’s like; only patients can tell us that. Our approach is not focused on just getting the physician to prescribe an appropriate product, it’s about helping rare disease patients get diagnosed and helping them to remain on the right therapy for as long as necessary for them to achieve optimal outcomes.”

Providing effective therapies as well as support services for patients is a long-distance journey, he says. “It’s a long process, it’s about understanding individual patients, understanding healthcare providers and what they’re looking for, and it’s about being very close to the community. For me, that’s the thing I’m most proud of – our ability to connect with patient communities.”

Shire also involves patients as early as possible, says Sternberg. “The patient journey for us starts early when we get close to the community to understand their needs; this starts way before a product is developed. You have to understand the patient in order to develop the product but you also have to work very early on with the regulatory authorities to define a clinical pathway. Our head of R&D uses the analogy of driving down a road; when you’re bringing a cardiovascular product to market, for example, the route has been mapped out, but with a product for premature babies, for example, there is no route, so you have to develop it with the regulators. The journey extends throughout the lifecycle too, as you need to know how to continually evolve the product once it’s on the market to meet changing patient needs.”

So, what are patients telling them? “Patients want more freedom and they want treatment that is tailored to them. Shire is a leader in haemophilia, for example, and we have very strong relationships with the community, which allowed us to develop myPKFiT, a customized software innovation that gives physicians a patient’s personalised PK curve. The software is being used by 400 healthcare providers in 24 countries around the world and we are working hard to get it approved here in the United States. Also, in immunology, we have multiple products based on where the patient is on their journey – some patients want to self-infuse while other patients want to be infused in the hospital. Looking forwards, patients want individualization of treatment, maybe adjusting their infusions from multiple times a week to multiple times a month. Once you’re out on the market and you understand the needs of your patients, you have to know how to customise your products to their needs.”

The company’s commercial model is based on “flawless execution”, says Sternberg. “We deal with a wide range of specialists, from haematologists to immunologists, oncologists to gastroenterologists, but what unites them is that they may never have seen a patient with one of these highly specialised or rare conditions. When you’re dealing with patients with these rare conditions and the physicians that treat them, it’s about execution, execution, execution. If you say you’re going to do something then you do it, and then make sure you follow it up. We must always remember there is a rare patient on the other side, the mother of a child that’s just been diagnosed and who is hopeful that someone out there can help them.”

While developing life-changing medications is crucial, ensuring that patients gain access to them is perhaps more important. “There are a lot of conversations taking place around value-based care and we generally support this shift. But how do you define and measure this value? Patients, payers, providers, manufacturers, everyone must agree what value is, and, depending on what side you’re on, sometimes agreement can be difficult. Once you get agreement, you need a system that allows you to measure and collect the data to prove that value. So, there are many challenges.”

The cost of a medicine cannot be the only factor in decision making, says Sternberg. “We need to make sure that patient preference is high on the list during any evaluation. We work in haemophilia, where patients have a very strong voice. Switch a patient to another medication simply because of cost is a very difficult thing for patients. We must remember that many haemophilia patients endured a painful period when many were infected with HIV because of contamination of plasma-derived products, so it is not surprising that they have a strong voice about what treatments they want to use.”

Pharma too needs strong voices. “We need leaders like Shire to reinforce and bring out the message of patient preference. Cost will always be high up on the agenda but we need to stand behind our patients and be vocal for our patients,” says Sternberg.

Perry Sternberg will be taking part in a panel discussion at eyeforpharma Philadelphia on 20-21 April.


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