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Aug 29
Matt Harutunian, Head of U.S. Advocacy, UCB; Leah M. Howard, J.D., President and CEO, National Psoriasis Foundation
Voices on Value: Working Together to Advance Policies that Create Sustainable Access


Scientific advances in recent years have led to the availability of new, innovative medicines and an increase in treatment options for people living with severe diseases. At UCB, we are committed to delivering moments that matter and differentiated solutions that help people living with severe diseases live the best life they can – as they define it. 

UCB supports a competitive, value-based system that will improve sustainable, affordable, and equitable access. However, we know too many people encounter frustrating barriers to accessing the therapies their physicians prescribe for them, which can lead to additional challenges affording therapies due to insurers’ initial refusal to cover all or only part of the provider-recommended therapy’s cost. One such barrier is called step therapy. Step therapy is a form of utilization management used by insurers as a mechanism to reduce costs for themselves by requiring patients to “try and fail” on one or more therapies before getting access to the most appropriate therapy prescribed by their health care provider. 

To improve the sustainability of our healthcare system, we support policies that better recognize value and improve access and affordability for patients, now and into the future. We are committed to promoting affordable access to care, including through policy approaches that remove impediments to a provider’s ability to prescribe the most appropriate therapy. 

Regular engagement with the people who use our medicines, healthcare professionals, and advocacy and professional organizations is an important aspect of our work to advance policies that help people living with severe diseases. 

One organization leading the way when it comes to reforming policies impacting patient access is the National Psoriasis Foundation (NPF). The mission of NPF is to drive efforts to cure psoriatic disease and improve the lives of those affected. NPF is the largest nonprofit funder of psoriasis and psoriatic arthritis research in the world. In terms of advocacy, NPF is a strong proponent for ensuring access to all treatment options by helping people impacted by psoriatic disease navigate cost and access roadblocks. 

Together, UCB and NPF have collaborated for several years on a number of federal, state, and access issues. For instance, at the state level, UCB and NPF have worked with other organizations on passing step therapy reform in over 25 states. Elsewhere, UCB and NPF have explored how to promote diversity in clinical trials, as highlighted in a recent podcast

Below Matt Harutunian, Head of U.S. Advocacy, UCB, and Leah M. Howard, J.D., President and CEO, National Psoriasis Foundation, have a conversation discussing advancing solutions to promote patient access and create a more sustainable healthcare system. 

Note: The conversation has been edited and condensed for clarity.


How are you and your organization approaching building a more sustainable healthcare system?

Leah Howard: If we're going to achieve a true value-based healthcare system, we are going to have to do that by starting with the patient and putting the patient at the center of everything we do. We need to ensure that as we make improvements in the healthcare system – whether they are new policy solutions or improved insurance design – that we do it with an eye toward how we get the patient on a therapy that's the best for them. We must ask what’s going to work to improve their health outcomes in a way that enables the patient to achieve the highest quality of life possible for them?

Matt Harutunian: At UCB, we’re inspired by patients and driven by science. Our approach to value-based care is driven by achieving sustainability, affordability, and access. For instance, how can we ensure that patients get access to innovative therapies coming to market? Or, how are we able to ensure that they're able to afford those therapies that are coming to market, and how to ensure that there's sustainable access so they can continue to stay on therapy for these chronic and severe diseases as long as they need to?

Access and affordability issues often go hand in hand. What are the biggest barriers you see people living with psoriasis or psoriatic arthritis encountering?

Howard: Many patients feel like access to therapies is a game of whack-a-mole – a very bad game of whack-a-mole where patients are really working to address one insurance practice or issue. When they finally get that issue under control, then their insurance company puts in place a new barrier, some new policy. 

It’s incredibly frustrating for patients when it feels like the finish line keeps moving and the goal posts keep changing.

When thinking about the whack-a-mole challenges our patient community experiences and trying to get around insurance barriers, there is one volunteer that I've worked with for many years, whose story comes to top of mind for me.

One of the things that she's talked a lot about are the challenges that she experienced with step therapy. And unfortunately, as a result of those challenges, she actually went through a period where her disease was not well managed, and she was significantly flaring. It caused her to lose all of her hair. She also has psoriatic arthritis and ended up having very severe joint damage. Only in the last several months has she gotten to the place where she's worked through those issues with her insurance company. She's now on treatment and doing very well. Her mood and spirit are completely different. For many years, she really faced a number of challenges and the pain that she talks about, not just the physical pain, but the emotional pain of trying to work through these issues and manage her disease, really took a very significant toll on her and her family.

Harutunian: I recently spoke with an individual living with an immunology disease, and this individual was actually able to use a step therapy override law in their state to get their physician to be able to approve access to the medicine initially prescribed. However, once she was approved to be prescribed the medicine, then she was encountering another issue, which Leah knows well, which is affordability. In this case, her employer had an accumulator program that was built on top of any step therapy requirements. She had to take another step in this game of whack-a-mole. 

What are potential policy solutions to address these barriers patients may encounter?

Harutunian: One of the things that UCB is focused on as we create, discover, and bring new medicines to market, is the ability of the individuals whose lives we'd be impacting get access to those medications. There has been an increasing trend in the payer community in putting more restrictions on regulations on how patients access those medications. 

On the policy side, one of the solutions we're working on in partnership with National Psoriasis Foundation is around removing some of those barriers like step therapy protocols. Step therapy override is one initiative that National Psoriasis Foundation has been leading for years, and UCB adamantly supports. The override policy gives the physician the opportunity to appeal or override the decision of an insurer not to cover a medication.

One other thing I'll mention that Leah and I have talked extensively about over the last three or four months is it's one thing to pass legislation, but it is a whole another thing to ensure that the public, patient, and provider communities are actually aware of and educated about new laws.

Howard: One of the most frustrating things for us is when we hear that people living with psoriasis in our community aren't able to access their prescribed therapies. It is incredibly frustrating for us because we know that if you are treated and well-managed, you can have a very good outcome with your psoriatic disease. 

Unfortunately, there are several challenges people living with psoriatic disease face, and those include barriers like step therapy and, even frankly, finding a provider is challenging for many patients. What we've tried to do at the NPF is really look across each of those barriers and identify solutions that we can bring forward.

Why is it beneficial to collaborate with patient advocacy groups to build a sustainable system?

Harutunian: UCB is driven by science and inspired by patients. Our patient advocacy team knows that we need to listen first, and the place to do that is through the advocacy community, through NPF, and through our other partners in rare disease and neurology. We need to understand what the unmet needs are and how can UCB help to address those through the advocacy community. 

Howard: I think one of the greatest things that we can do as a patient advocacy organization in partnering with other stakeholders, like the pharmaceutical industry, is to help bring those patient perspectives directly to those that are working to find tomorrow's innovations to serve our patients. When we have the opportunity to collaborate, when we have the opportunity to put the patient at the center of everything we do, and help to give pharmaceutical companies or other healthcare stakeholders that opportunity to listen to the patient voice, I think it changes the outcomes of that work.

Harutunian: UCB and NPF have been collaborative partners for several years, including on NPF’s work engaging other members of the healthcare community. NPF has done a nice job bringing in the payer perspective for roundtables to help us discuss how the whole ecosystem can work better for patients.  

Howard: I think the more partners we can engage in this conversation – whether it's going to the Hill to educate policymakers about the challenges that certain insurance practices and policies cause, or talking with payers directly about how they can better design coverage in order to enable access – I think it's so critical to have these partners and these collaborators in that effort. 

Additionally, because psoriatic disease can also result in comorbidities like heart disease and mental health challenges, it’s critical to work closely and have strong relationships with some of these other patient communities to ensure all of the people we serve have access to treatments and information to help them end the burdens of chronic disease.

We are proud to partner with UCB in this work and to bring forward common sense solutions.

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